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Abasseri M, Hoque S, Caldwell K, Sheahan L, Kochovska S, Agar M, Zekry A. Exploring Misconceptions of Palliative Care Among Patients With Hepatocellular Carcinoma: A Pilot Study. Am J Hosp Palliat Care 2025; 42:467-476. [PMID: 39157978 PMCID: PMC11894838 DOI: 10.1177/10499091241268423] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/12/2024] [Revised: 06/16/2024] [Accepted: 06/18/2024] [Indexed: 08/20/2024] Open
Abstract
BackgroundHepatocellular carcinoma is a burdensome form of liver cancer with an increasing global prevalence. Emerging evidence has shown that early palliative care introduction at diagnosis of any life-limiting illness improves patient and carer outcomes. Despite this, patients with hepatocellular carcinoma usually receive palliative care late. These patients are important stakeholders in the provision of palliative care, but their perceived barriers regarding its delivery are poorly defined.AimThis pilot study aimed to identify the barriers perceived by patients to integrating palliative care into the hepatocellular carcinoma treatment algorithm.DesignPatients living with hepatocellular carcinoma undertook semi-structured interviews about their perceptions of palliative care. We compared these perceptions before and after providing a brief explanation of palliative care. Interview data was inductively coded in NVivo 12 (2018) and thematically analysed.ResultsTwenty-one patients were interviewed. 16 perceived palliative care to mean end-of-life therapy, and nine participants had no prior knowledge of palliative care. After hearing a definition of palliative care, 17 participants reported changed positive attitudes. Seven participants supported a name change, including four participants who continued to reject palliative care following the explanation due to the negative stigma associated with the term 'palliative care'.ConclusionThere is significant misperception about the purpose of palliative care among patients with hepatocellular carcinoma, constituting a barrier to early integration. This can be feasibly addressed with a two-folded educational and renaming initiative to dispel patient misconceptions regarding palliative care. Effective strategies to achieve this should be developed and tested with relevant stakeholders, particularly patients.
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Affiliation(s)
| | - Shakira Hoque
- Gastroenterology and Hepatology Department, St George Hospital, Sydney, NSW, Australia
| | - Kim Caldwell
- Palliative Medicine, Calvary Hospital Kogarah, Kogarah, NSW, Australia
- Palliative Medicine Department, St George Hospital, Sydney, NSW, Australia
| | - Linda Sheahan
- Clinical Ethics Service, South Eastern Sydney Local Health District, Randwick, NSW, Australia
- Sydney Health Ethics, The University of Sydney, Camperdown, NSW, Australia
- St George and Sutherland Clinical Campus, UNSW Medicine & Health, Sydney, NSW, Australia
- Palliative Medicine Department, St George Hospital, Sydney, NSW, Australia
| | - Slavica Kochovska
- Faculty of Science, Medicine and Health, University of Wollongong, Wollongong, NSW, Australia
- IMPACCT, Faculty of Health, University of Technology, Sydney, NSW, Australia
| | - Meera Agar
- IMPACCT, Faculty of Health, University of Technology, Sydney, NSW, Australia
| | - Amany Zekry
- School of Medicine and Health, UNSW, Sydney, NSW, Australia
- Gastroenterology and Hepatology Department, St George Hospital, Sydney, NSW, Australia
- St George and Sutherland Clinical Campus, UNSW Medicine & Health, Sydney, NSW, Australia
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Bakitas M, Hoppmann N, Stockdill M, Gazaway S, Armstrong M, Khalidi S, Herbey I, Ford S, Nix Parker T, Frank J, Navarro V, Verma M. Developing palliative care interventions in liver disease using formative and summative qualitative evaluation. Hepatology 2025:01515467-990000000-01245. [PMID: 40245343 DOI: 10.1097/hep.0000000000001242] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/16/2024] [Accepted: 09/16/2024] [Indexed: 04/19/2025]
Abstract
Evaluation of the effectiveness of nascent care delivery interventions to integrate palliative care into end-stage-liver disease (ESLD) is limited. Intervention development and evaluation is a systematic, complex, and time-consuming process. Qualitative research approaches, known as formative and summative evaluations, are recommended during intervention development to explore intervention mechanisms, determine the need for refinement, and provide a deeper understanding of intervention efficacy, effectiveness, and implementation barriers and facilitators. Although qualitative formative and summative evaluations are resource-intensive, they provide critical information about intervention feasibility, patient and clinician acceptability, and patient-centeredness. This review summarizes how qualitative formative and summative evaluation methods can inform the design, adaptation, and evaluation of interventions to integrate palliative care into ESLD. We describe the completed qualitative summative evaluation study, embedded within PALliative Care for end stage LIVER diseases, an in-progress 19-site cluster randomized trial of hepatologist-led versus palliative specialist-led palliative care for patients with ESLD and their caregivers. We include patient, family, and clinician demographic data emphasizing how the sample is representative of the parent randomized clinical trial (RCT) and describe how the embedded qualitative study explored patient, family, and clinicians' perspectives on the intervention. Specifically, we sought to understand how the intervention was enacted (fidelity) and to provide a roadmap for future palliative care practice integration in ESLD. In conclusion, formative and summative evaluations play a vital role in improving interventions so that valuable and scarce palliative care resources are applied equitably and effectively and so that patients and their caregivers experience the best possible care and quality of life as they live with ESLD.
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Affiliation(s)
- Marie Bakitas
- Department of Medicine, Division of Gerontology, Geriatrics, and Palliative Care, School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Nicholas Hoppmann
- Department of Medicine, Division of Hepatology, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Macy Stockdill
- Family, Community, & Health Systems, School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Shena Gazaway
- Family, Community, & Health Systems, School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Margaret Armstrong
- Family, Community, & Health Systems, School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Sarah Khalidi
- Family, Community, & Health Systems, School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Ivan Herbey
- Department of Medicine, Division of Gastrointestinal Surgery, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Stephanie Ford
- Acute, Chronic, and Continuing Care, School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Tamara Nix Parker
- Office of Research and Scholarship, School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Jennifer Frank
- Office of Research and Scholarship, School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA
| | - Victor Navarro
- Department of Medicine, Jefferson Einstein Hospital, Thomas Jefferson University, Philadelphia, Pennsylvania, USA
| | - Manisha Verma
- Department of Medicine, Jefferson Einstein Hospital, Thomas Jefferson University, Philadelphia, Pennsylvania, USA
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Eason RJ, Brighton LJ, Koffman J, Bristowe K. Coming to terms with dying: Advance care planning as a conduit between clinicians, patients, and conversations about death and dying - a qualitative interview study. Palliat Med 2025; 39:425-436. [PMID: 39968906 DOI: 10.1177/02692163251318907] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/20/2025]
Abstract
BACKGROUND Advance care planning discussions exploring future care and support needs can be beneficial to people with advanced illness. While research has focussed on barriers, outcomes, and completion, little is known about how discussions influence thoughts, feelings, and behaviours. AIM To explore experiences of advance care planning for people with incurable life-limiting illnesses, to understand the impact of discussions on individuals, and factors influencing psychological responses. DESIGN Semi-structured qualitative interviews were conducted. Data were analysed using framework analysis. Reflexive journalling and discussion of coding framework and themes supported rigour. SETTING/PARTICIPANTS Twenty purposively sampled adults receiving hospice care, aged 30-93 with cancer (n = 15) and non-cancer (n = 5) diagnoses were interviewed. RESULTS Advance care planning elicits multiple complex thoughts, emotions, and behaviours, with responses ranging from the procedural to the profound. Discussions empowered and instilled confidence, promoted openness with relatives, encouraged people to make the most of their time remaining, and sometimes contributed to coming to terms with their mortality. Factors influencing experiences of discussions reflected the complexity and diversity in participants' lives, personalities, and life experiences, with discussions exposing the realities of living with terminal illness. CONCLUSION Individuals' unique lives and experiences shape their responses to, and the impact of advance care planning on how they think, feel and behave. Advance care planning is not simply a means to document end-of-life care preferences, but can empower and instil confidence in patients, and may form part of the process of coming to terms with mortality, allowing clinicians to shift focus from process-related outcomes.
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Affiliation(s)
- Rowena Jane Eason
- Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK
| | - Lisa Jane Brighton
- Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK
| | - Jonathan Koffman
- Wolfson Palliative Care Research Centre, Hull York Medical School, Hull, UK
| | - Katherine Bristowe
- Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK
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Chen L, Huang Z, Jiang C, Wu C, He S, Zeng F, Huang S, Zhang F. Illness perception, coping and psychological distress among patients with metabolic dysfunction-associated fatty liver disease (MAFLD) in China. BMC Public Health 2025; 25:541. [PMID: 39930393 PMCID: PMC11812146 DOI: 10.1186/s12889-024-21260-8] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/24/2023] [Accepted: 12/31/2024] [Indexed: 02/13/2025] Open
Abstract
OBJECTIVES The study examined the effects of illness perception on mental health among patients with metabolic dysfunction-associated fatty liver disease (MAFLD) and the moderating role of coping style in this effect. METHODS The current study has collected the data of MAFLD patients at baseline and 8 months after. In both baseline and follow-up surveys, structural questionnaires were adopted to assess participants' illness perception (BIPQ), coping strategies (Brief COPE) and psychological distress (GHQ-12). A cross-lagged panel model was constructed to examine the associations between illness perception and psychological distress over 8 months. The moderating role of coping in the relationship between illness perception and psychological distress was addressed. RESULTS A total of 155 participants diagnosed with MAFLD were enrolled in the baseline survey, of which 71 patients engaged in the 8-month follow-up. The results showed that severe illness perceptions (perceiving MAFLD with more negative consequence, more negative emotions, lower coherence, and less treatment control) were associated with increased psychological distress 8 months later (β = 0.171, p < 0.05). Though approach coping showed an overall positive effect (β = 0.169, p < 0.05), people using it as a dominant strategy tend to be more subjected to the impacts of negative illness perceptions. CONCLUSION Threatening perceptions about MAFLD were associated with more psychological distress over time, and coping style has moderated the effects of illness perceptions. Healthcare providers should be aware of the impacts of negative illness perceptions, particularly when developing coping skill training programs to promote well-being and recovery.
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Affiliation(s)
- Liyuan Chen
- Department of Public Health and Preventive Medicine, School of Medicine, Jinan University, Guangzhou, China
| | - Zhongxuan Huang
- Department of Public Health and Preventive Medicine, School of Medicine, Jinan University, Guangzhou, China
| | - Chenqi Jiang
- Department of Public Health and Preventive Medicine, School of Medicine, Jinan University, Guangzhou, China
| | - Chuanghong Wu
- Shenzhen Qianhai Shekou Free Trade Zone Hospital, Shenzhen, China
| | - Shihua He
- Shenzhen Qianhai Shekou Free Trade Zone Hospital, Shenzhen, China
| | - Fangfang Zeng
- Department of Public Health and Preventive Medicine, School of Medicine, Jinan University, Guangzhou, China
| | - Shaofen Huang
- Shenzhen Qianhai Shekou Free Trade Zone Hospital, Shenzhen, China.
| | - Fan Zhang
- Department of Public Health and Preventive Medicine, School of Medicine, Jinan University, Guangzhou, China.
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Fuson O, Mitra A, Little C, Hiatt S, Franklin H, Dieckmann NF, Hansen L. Role of Uncertainty in Illness and Coping Strategies in Advance Directive Completion in Patients With End-stage Liver Disease. J Clin Gastroenterol 2025; 59:90-96. [PMID: 38567890 PMCID: PMC11442678 DOI: 10.1097/mcg.0000000000001981] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/13/2023] [Accepted: 01/14/2024] [Indexed: 10/02/2024]
Abstract
OBJECTIVE We examined the associations among advance directives (ADs) completion, coping, uncertainty in illness, and optimism and pessimism in patients with end-stage liver disease (ESLD). BACKGROUND Although associations among ADs, coping, and uncertainty have been studied in patients with other life-limiting illnesses, these concepts have not been studied together in patients with ESLD. PATIENTS AND METHODS Patients were recruited at 2 health care institutions as part of a larger prospective study. They were enrolled if they had a diagnosis of nonhepatocellular carcinoma ESLD, Sodium Model for End-Stage Liver Disease ≥15, and no prior history of liver transplantation. Uncertainty, coping, optimism, and pessimism were assessed using the Uncertainty in Illness Scale for Adults, Revised Ways of Coping Checklist, and Life Orientation Test-revised. AD documentation at the time of study enrollment was retrospectively extracted from patient medical records. RESULTS In the sample [N = 181; median age = 57 y, 115 (64%) males], male sex [odds ratio (OR) = 4.66; 95% CI: 1.53, 14.17], being listed or under evaluation for liver transplantation (OR = 3.09; 95% CI: 1.10, 8.67), greater Sodium Model for End-Stage Liver Disease scores (OR = 1.10; 95% CI: 1.01, 1.20), and greater uncertainty (OR = 1.04; 95% CI: 1.01, 1.07) were positively associated with AD documentation. Higher coping avoidance was negatively associated with AD documentation (OR = 0.915; 95% CI: 0.840, 0.997). CONCLUSIONS Clinicians should consider the role of uncertainty and coping measures to improve patient-specific advance care planning conversations and expand opportunities for all patients with ESLD to file an AD, especially women and patients not listed or under evaluation for transplantation.
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Affiliation(s)
- Olivia Fuson
- Department of Medicine, Oregon Health & Science University, Portland OR 97239, USA
| | - Arnab Mitra
- Division of Gastroenterology and Hepatology, Department of Medicine, Oregon Health & Science University, Portland OR 97239, USA
| | | | - Shirin Hiatt
- School of Nursing, Oregon Health & Science University, Portland OR 97239, USA
| | - Heather Franklin
- School of Nursing, Oregon Health & Science University, Portland OR 97239, USA
| | - Nathan F Dieckmann
- School of Nursing, Oregon Health & Science University, Portland OR 97239, USA
| | - Lissi Hansen
- School of Nursing, Oregon Health & Science University, Portland OR 97239, USA
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Haire E, Mann M, Yeoman A, Atkinson C, Wright M, Noble S. Supportive and palliative care needs in advanced non-malignant liver disease: systematic review. BMJ Support Palliat Care 2024; 14:e2341-e2348. [PMID: 38724224 DOI: 10.1136/spcare-2024-004785] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/22/2024] [Accepted: 03/21/2024] [Indexed: 01/15/2025]
Abstract
Advanced cirrhosis confers a significant symptom burden and has a 50% 2-year mortality rate in those with decompensated disease. There is increasing demand for supportive and palliative care (SAPC) for these patients, yet no consensus on the best model of delivery. It is necessary to identify the needs of such patients and their carers, and evaluate whether they are being met.A literature search was conducted using key words pertaining to adult patients with liver cirrhosis and their SAPC needs. Study quality was assessed and findings grouped by theme. 51 full texts were selected for inclusion, 8 qualitative studies, 33 quantitative studies, 7 systematic reviews, 2 mixed methods studies and 1 Delphi methods. Key findings were grouped into three main themes: SAPC needs, access to SAPC and models of care.Patients with cirrhosis have significant psychological and physical symptom burden with many unmet needs. These data failed to identify the best service model of care. The impact of specialist palliative care (SPC) referral was limited by small numbers and late referrals. With the majority of studies conducted in the USA, it is unclear how well these findings translate to other healthcare systems. Comparison between hepatology led services and SPC was limited by inconsistent outcome measures and prevented pooling of data sets. These data also had limited evaluation of patient-reported outcome measures. We propose the development of a core outcome set to ensure consistent and meaningful evaluation of the SAPC needs of patients with advanced non-malignant liver cirrhosis.
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Affiliation(s)
| | - Mala Mann
- University Library Service, Cardiff University, Cardiff, UK
| | | | - Clea Atkinson
- Palliative Care Department, Cardiff and Vale University Health Board, Cardiff, UK
| | - Mark Wright
- University Hospital Southampton NHS Foundation Trust, Southampton, UK
| | - Simon Noble
- Marie Curie Palliative Care Research Centre, Cardiff University, Cardiff, UK
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Witkiewitz K, Mellinger JL, Lee BP, Dasarathy S, Nagy LE, Mitchell MC. Reply to 'An expert panel Consensus Statement on ALD without experts by experience'. Nat Rev Gastroenterol Hepatol 2024; 21:886. [PMID: 39402385 DOI: 10.1038/s41575-024-00995-0] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/27/2024]
Affiliation(s)
- Katie Witkiewitz
- Center on Alcohol, Substance use and Addictions, University of New Mexico, Albuquerque, NM, USA
| | - Jessica L Mellinger
- Department of Internal Medicine, Department of Psychiatry, Michigan Medicine, Ann Arbor, MI, USA
| | - Brian P Lee
- Division of Gastroenterology and Liver Diseases, University of Southern California Keck School of Medicine, Los Angeles, CA, USA
- Institute for Addiction Science, University of Southern California, Los Angeles, CA, USA
| | - Srinivasan Dasarathy
- Department of Gastroenterology and Hepatology, Cleveland Clinic, Cleveland, OH, USA
| | - Laura E Nagy
- Department of Inflammation and Immunity, Lerner Research Institute, Cleveland Clinic, Cleveland, OH, USA.
| | - Mack C Mitchell
- Department of Internal Medicine, University of Texas Southwestern Medical Center, Dallas, TX, USA.
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Donlan J, Kaplan A, Noll A, Pintro K, Horick N, Zeng C, Edelen M, Soetan Z, Comrie C, Indriolo T, Li L, Zhu E, Armstrong ME, Thompson LL, Zhou J, Diop MS, Mason N, Engel KG, Rowland M, Kenimer S, O'Brien K, Lai JC, Jackson V, Chung RT, El-Jawahri A, Ufere NN. Prognostic Communication, Symptom Burden, Psychological Distress, and Quality of Life Among Patients With Decompensated Cirrhosis. Clin Gastroenterol Hepatol 2024:S1542-3565(24)01044-9. [PMID: 39571876 DOI: 10.1016/j.cgh.2024.10.017] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/12/2024] [Revised: 10/21/2024] [Accepted: 10/24/2024] [Indexed: 12/17/2024]
Abstract
BACKGROUND & AIMS Timely prognostic communication is a critical component of care for patients with decompensated cirrhosis (DC). However, few studies have examined the association of prognostic communication with symptoms, mood, and health-related quality of life (HRQOL) in this population. METHODS In this cross-sectional study of 218 outpatients with DC, we assessed their self-reported health status (terminally ill vs not terminally ill), their prognostic communication with their hepatologists (Prognosis and Treatment Preferences Questionnaire), symptom burden (Revised Edmonton Symptom Assessment Scale), psychological distress (Hospital Anxiety and Depression Scale), and HRQOL (Short-Form Liver Disease Quality of Life scale). We used linear regression to examine associations among patients' self-reported health status and prognostic communication with their symptom burden, psychological distress, and HRQOL. RESULTS Over 75% of patients reported that prognostic communication was helpful for making treatment decisions, maintaining hope, and coping with their disease. However, 81% had never discussed their end-of-life care wishes with their hepatologists. Overall, 36% self-reported a terminally ill health status, which was associated with higher symptom burden (B = 8.33; P = .003), anxiety (B = 1.97; P = .001), and depression (B = 2.01; P = .001) and lower HRQOL (B = -7.22; P = .002). Patients who wished they had more information on their prognosis reported higher symptom burden (B = 7.14; P = .010), anxiety (B = 1.63; P = .005), and depression (B = 1.50; P = .010) and lower HRQOL (B = -7.65; P = .001). CONCLUSIONS Although most patients with DC highly valued prognostic communication, the majority reported never discussing their end-of-life care preferences with their hepatologists. Self-reported terminally ill health status and inadequate prognostic communication were associated with poorer symptoms, mood, and HRQOL. Interventions to improve prognostic communication while simultaneously providing adequate supportive care are warranted.
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Affiliation(s)
- John Donlan
- Department of Internal Medicine, Massachusetts General Hospital, Boston, Massachusetts
| | - Alyson Kaplan
- Abdominal Transplant Institute, Department of Surgery, Tufts Medical Center, Boston, Massachusetts
| | - Alan Noll
- Division of Gastroenterology, Hepatology and Nutrition, University of Pittsburgh, Pittsburgh, Pennsylvania
| | - Kedie Pintro
- MGH Biostatistics, Massachusetts General Hospital, Boston, Massachusetts
| | - Nora Horick
- MGH Biostatistics, Massachusetts General Hospital, Boston, Massachusetts
| | - Chengbo Zeng
- PROVE Center, Brigham and Women's Hospital, Boston, Massachusetts
| | - Maria Edelen
- PROVE Center, Brigham and Women's Hospital, Boston, Massachusetts
| | - Zainab Soetan
- MGH Biostatistics, Massachusetts General Hospital, Boston, Massachusetts
| | - Cameron Comrie
- Department of Surgery, Massachusetts General Hospital, Boston, Massachusetts
| | - Teresa Indriolo
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Boston, Massachusetts
| | - Lucinda Li
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Boston, Massachusetts
| | - Enya Zhu
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Boston, Massachusetts
| | - Malia E Armstrong
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Boston, Massachusetts
| | - Leah L Thompson
- Department of Radiation Oncology, Brigham and Women's Hospital, Boston, Massachusetts
| | - Joyce Zhou
- Department of Internal Medicine, Massachusetts General Hospital, Boston, Massachusetts
| | - Michelle S Diop
- Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, Massachusetts
| | - Nancy Mason
- Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, Massachusetts
| | - Kirsten G Engel
- Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, Massachusetts
| | - Michaela Rowland
- Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, Massachusetts
| | - Sara Kenimer
- Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, Massachusetts
| | - Karen O'Brien
- Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, Massachusetts
| | - Jennifer C Lai
- Division of Gastroenterology and Hepatology, University of California San Francisco, California
| | - Vicki Jackson
- Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, Massachusetts
| | - Raymond T Chung
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Boston, Massachusetts
| | - Areej El-Jawahri
- Division of Hematology and Oncology, Massachusetts General Hospital, Boston, Massachusetts
| | - Nneka N Ufere
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Boston, Massachusetts.
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Zhang H, Dong X, Zhu L, Tang FS. Elafibranor: A promising treatment for alcoholic liver disease, metabolic-associated fatty liver disease, and cholestatic liver disease. World J Gastroenterol 2024; 30:4393-4398. [PMID: 39494094 PMCID: PMC11525860 DOI: 10.3748/wjg.v30.i40.4393] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/01/2024] [Revised: 09/15/2024] [Accepted: 09/23/2024] [Indexed: 10/16/2024] Open
Abstract
Liver diseases pose a significant threat to human health. Although effective therapeutic agents exist for some liver diseases, there remains a critical need for advancements in research to address the gaps in treatment options and improve patient outcomes. This article reviews the assessment of Elafibranor's effects on liver fibrosis and intestinal barrier function in a mouse model of alcoholic liver disease (ALD), as reported by Koizumi et al in the World Journal of Gastroenterology. We summarize the impact and mechanisms of Elafibranor on ALD, metabolic-associated fatty liver disease, and cholestatic liver disease based on current research. We also explore its potential as a dual agonist of PPARα/δ, which is undergoing Phase III clinical trials for metabolic-associated steatohepatitis. Our goal is to stimulate further investigation into Elafibranor's use for preventing and treating these liver diseases and to provide insights for its clinical application.
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Affiliation(s)
- Hang Zhang
- Department of Clinical Pharmacy, Key Laboratory of Basic Pharmacology of Guizhou Province and School of Pharmacy, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
- Key Laboratory of Basic Pharmacology of Ministry of Education and Joint International Research Laboratory of Ethnomedicine of Ministry of Education, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
- Key Laboratory of Clinical Pharmacy in Zunyi City, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
| | - Xuan Dong
- Department of Clinical Pharmacy, Key Laboratory of Basic Pharmacology of Guizhou Province and School of Pharmacy, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
- Key Laboratory of Basic Pharmacology of Ministry of Education and Joint International Research Laboratory of Ethnomedicine of Ministry of Education, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
- Key Laboratory of Clinical Pharmacy in Zunyi City, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
| | - Lei Zhu
- Department of Clinical Pharmacy, Key Laboratory of Basic Pharmacology of Guizhou Province and School of Pharmacy, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
- Key Laboratory of Basic Pharmacology of Ministry of Education and Joint International Research Laboratory of Ethnomedicine of Ministry of Education, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
- Key Laboratory of Clinical Pharmacy in Zunyi City, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
| | - Fu-Shan Tang
- Department of Clinical Pharmacy, Key Laboratory of Basic Pharmacology of Guizhou Province and School of Pharmacy, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
- Key Laboratory of Basic Pharmacology of Ministry of Education and Joint International Research Laboratory of Ethnomedicine of Ministry of Education, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
- Key Laboratory of Clinical Pharmacy in Zunyi City, Zunyi Medical University, Zunyi 563006, Guizhou Province, China
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10
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Hatanaka K, Sasaki Y, Tanaka M. Adjusting to living with chronic liver disease among patients who continue regular healthcare visits for hepatocellular carcinoma surveillance: A grounded theory study. Jpn J Nurs Sci 2024; 21:e12619. [PMID: 39205382 DOI: 10.1111/jjns.12619] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/27/2023] [Revised: 07/12/2024] [Accepted: 08/01/2024] [Indexed: 09/04/2024]
Abstract
AIM To explore patients' process of living with chronic liver disease while continuing regular healthcare visits for hepatocellular carcinoma surveillance. METHODS Semistructured interviews and participant observations were conducted in this qualitative constructivist grounded theory study. The participants included 11 patients undergoing regular hepatocellular carcinoma surveillance every 1-6 months for 2-30 years. Data were analyzed using coding, memo-writing, theoretical sampling, and constant comparison. RESULTS The participants incorporated regular healthcare visits into their living cycle. The cycle's core comprised two categories ("inferring my liver condition" and "desiring status quo"). The cycle underwent a transition described by three phases ("seeking ways to live with my chronic liver disease," "being overwhelmed by living with my chronic liver disease," and "reconstructing my life to live with my chronic liver disease"). This transition involved adjusting to living with chronic liver disease while continuing regular healthcare visits. The relative importance of the cycle's core progressively shifted from "inferring my liver condition" to "desiring status quo." CONCLUSIONS This study revealed the transition phases of patients' living cycles in adjusting to living with chronic liver disease while continuing regular healthcare visits. Understanding the different phases in which patients are and the psychological impact of healthcare visits can help them look forward to recuperative actions. Furthermore, patients who have a sense of ownership experience loneliness because of regular healthcare visits. A support system including nurses as part of regular hepatocellular carcinoma surveillance should be established to help ease patients' sense of loneliness by utilizing their sense of ownership.
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Affiliation(s)
- Keiko Hatanaka
- Department of Adult Health Nursing, Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan
- Division of Translational Nursing, Faculty of Health Science, Toho University, Chiba, Japan
| | - Yoshiko Sasaki
- Department of Disaster and Critical Care Nursing, Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan
| | - Makoto Tanaka
- Department of Adult Health Nursing, Graduate School of Health Care Sciences, Tokyo Medical and Dental University (TMDU), Tokyo, Japan
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11
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Holdsworth R, Rowley G, Farrington E. Caring for dying patients in the community. BMJ 2024; 386:e071661. [PMID: 39117432 DOI: 10.1136/bmj-2022-071661] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 08/10/2024]
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12
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Suddle A, Reeves H, Hubner R, Marshall A, Rowe I, Tiniakos D, Hubscher S, Callaway M, Sharma D, See TC, Hawkins M, Ford-Dunn S, Selemani S, Meyer T. British Society of Gastroenterology guidelines for the management of hepatocellular carcinoma in adults. Gut 2024; 73:1235-1268. [PMID: 38627031 PMCID: PMC11287576 DOI: 10.1136/gutjnl-2023-331695] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/06/2023] [Accepted: 03/19/2024] [Indexed: 05/01/2024]
Abstract
Deaths from the majority of cancers are falling globally, but the incidence and mortality from hepatocellular carcinoma (HCC) is increasing in the United Kingdom and in other Western countries. HCC is a highly fatal cancer, often diagnosed late, with an incidence to mortality ratio that approaches 1. Despite there being a number of treatment options, including those associated with good medium to long-term survival, 5-year survival from HCC in the UK remains below 20%. Sex, ethnicity and deprivation are important demographics for the incidence of, and/or survival from, HCC. These clinical practice guidelines will provide evidence-based advice for the assessment and management of patients with HCC. The clinical and scientific data underpinning the recommendations we make are summarised in detail. Much of the content will have broad relevance, but the treatment algorithms are based on therapies that are available in the UK and have regulatory approval for use in the National Health Service.
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Affiliation(s)
- Abid Suddle
- King's College Hospital NHS Foundation Trust, London, UK
| | - Helen Reeves
- Newcastle University Translational and Clinical Research Institute, Newcastle upon Tyne, UK
| | - Richard Hubner
- Department of Oncology, The Christie NHS Foundation Trust, Manchester, UK
| | | | - Ian Rowe
- University of Leeds, Leeds, UK
- St James's University Hospital, Leeds, UK
| | - Dina Tiniakos
- Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK
| | - Stefan Hubscher
- Department of Pathology, University of Birmingham, Birmingham, UK
| | - Mark Callaway
- Division of Diagnostics and Therapies, University Hospitals Bristol NHS Trust, Bristol, UK
| | | | - Teik Choon See
- Department of Radiology, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK
| | - Maria Hawkins
- Department of Medical Physics and Biomedical Engineering, University College London, London, UK
| | | | - Sarah Selemani
- King's College Hospital NHS Foundation Trust, London, UK
| | - Tim Meyer
- Department of Oncology, University College, London, UK
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13
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Wang Y, Liu K. Therapeutic potential of oleanolic acid in liver diseases. NAUNYN-SCHMIEDEBERG'S ARCHIVES OF PHARMACOLOGY 2024; 397:4537-4554. [PMID: 38294504 DOI: 10.1007/s00210-024-02959-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Received: 12/21/2023] [Accepted: 01/15/2024] [Indexed: 02/01/2024]
Abstract
Liver-associated diseases affect millions of individuals worldwide. In developed countries, the incidence of viral hepatitis is reducing due to advancements in disease prevention, diagnosis, and treatment. However, with improvements in living standards, the prevalence of metabolic liver diseases, such as non-alcoholic fatty liver disease and alcohol-related liver disease, is expected to increase; notably, this rise in the prevalence of metabolic liver disease can lead to the development of more severe liver diseases, including liver failure, cirrhosis, and liver cancer. The growing demand for natural alternative therapies for chronic diseases has highlighted the importance of studying the pharmacology of bioactive compounds in plants. One such compound is oleanolic acid (OA), a pentacyclic triterpenoid known for its antioxidant, anti-inflammatory, anti-ulcer, antibacterial, antiviral, antihypertensive, anti-obesity, anticancer, anti-diabetic, cardioprotective, hepatoprotective, and anti-neurodegenerative properties. Recent studies have demonstrated that OA treatment can reduce the risk of pathological liver damage, ultimately alleviating liver dysregulation and restoring overall liver function. This review aims to explore the latest research on the biological effects of OA and its derivatives. Notably, it explores the mechanisms of action of these compounds in both in vitro and in vivo research models and, ultimately, highlights OA as a promising candidate for alternative therapies in the treatment and management of chronic liver disease.
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Affiliation(s)
- Yongxin Wang
- Department of Hepatobiliary and Pancreatic Surgery II, General Surgery Center, The First Hospital of Jilin University, Changchun, 130021, China
| | - Kai Liu
- Department of Hepatobiliary and Pancreatic Surgery II, General Surgery Center, The First Hospital of Jilin University, Changchun, 130021, China.
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14
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Beresford CJ, Rahman M, Gray Y, Ramshaw S, Gelling L, Baron S, Dominey J. Embedding Public Involvement in a PhD Research Project With People Affected by Advanced Liver Disease. Health Expect 2024; 27:e14097. [PMID: 38864117 PMCID: PMC11167232 DOI: 10.1111/hex.14097] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/25/2024] [Revised: 05/06/2024] [Accepted: 05/21/2024] [Indexed: 06/13/2024] Open
Abstract
BACKGROUND Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. OBJECTIVE To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. METHODS The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. RESULTS Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. CONCLUSION Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. PATIENT OR PUBLIC CONTRIBUTION This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members.
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Affiliation(s)
- Cathy J. Beresford
- Department of Nursing Science, Faculty of Health & Social SciencesBournemouth UniversityBournemouthDorsetUK
| | | | | | | | - Leslie Gelling
- Department of Nursing Science, Faculty of Health & Social SciencesBournemouth UniversityBournemouthDorsetUK
| | - Sue Baron
- Department of Nursing Science, Faculty of Health & Social SciencesBournemouth UniversityBournemouthDorsetUK
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15
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Kaplan A, Ladin K, Junna S, Lindenberger E, Ufere NN. Serious Illness Communication in Cirrhosis Care: Tools to Improve Illness Understanding, Prognostic Understanding, and Care Planning. GASTRO HEP ADVANCES 2024; 3:634-645. [PMID: 38873184 PMCID: PMC11175167 DOI: 10.1016/j.gastha.2024.04.003] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Indexed: 06/15/2024]
Abstract
Patients with cirrhosis frequently experience an unpredictable illness trajectory, with frequent hospitalizations and complications. Along with the uncertain nature of the disease, the possibility of a lifesaving and curative transplant often makes prognostic discussions and future care decisions challenging. Serious illness communication (SIC) refers to supportive communication whereby clinicians assess patients' illness understanding, share prognostic information according to patients' preferences, explore patients' goals, and make recommendations for care that align with these goals. SIC includes 3 key components: (1) illness understanding; (2) prognostic understanding; and (3) care planning. In this piece, we explore current barriers to early implementation of SIC in cirrhosis care and share possible solutions, including adopting a multidisciplinary approach, delivering culturally competent care, and training clinicians in SIC core skills. By use of a case example, we aim to demonstrate SIC in action and to provide clinicians with tools and skills that can be used in practice.
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Affiliation(s)
- Alyson Kaplan
- Department of Gastroenterology, Department of Surgery, Transplant Institute, Tufts University Medical Center, Boston, Massachusetts
| | - Keren Ladin
- Department of Community Health, Tufts University, Boston, Massachusetts
| | - Shilpa Junna
- Department of Gastroenterology, Hepatology and Nutrition, Cleveland Clinic, Cleveland, Ohio
| | - Elizabeth Lindenberger
- Department of Geriatrics and Palliative Care, Massachusetts General Hospital, Boston, Massachusetts
| | - Nneka N. Ufere
- Department of Gastroenterology, Massachusetts General Hospital, Boston, Massachusetts
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16
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Akiyama N, Kajiwara S, Uozumi R, Akiyama T, Hayashida K, Sim J, Morikawa M. Perceptions of Uncertainty in Medical Care Among Non-medical Professionals and Nurses in Japan: A Cross-Sectional Internet-Based Preliminary Survey. Cureus 2024; 16:e55418. [PMID: 38567229 PMCID: PMC10986900 DOI: 10.7759/cureus.55418] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 02/25/2024] [Indexed: 04/04/2024] Open
Abstract
BACKGROUND Medical care is impacted by uncertainty caused by various factors. The uncertainty that exists in medical care can cause patient distrust and lead to conflict. This study compared the tolerance of uncertainty in medical care between non-medical professionals and nurses. METHODS We conducted a cross-sectional Internet-based survey. Participants included 2,100 individuals (600 nurses and 1,500 non-medical professionals; aged ≥ 20 years) from different parts of Japan. Of these, we excluded 70 participants who were classified as non-medical professionals but were registered nurses. Finally, we analyzed data from 2,030 participants (600 nurses and 1,430 non-medical professionals). Three registered nurses and nursing researchers developed an original questionnaire on tolerance of uncertainty in medical care. Data regarding participants' characteristics (age, sex, education level, marital status, having children, population size of the residential area, medical care usage, and occupation) were obtained. We performed a one-way analysis of variance (ANOVA) to compare the data between non-medical professionals and nurses. Additionally, we employed a multiple regression model to investigate factors related to tolerance of uncertainty in medical care scores. RESULTS A significant portion of participants (36.7%) were aged 40-50 years (n = 745). Most were women (n = 1,210, 59.6%), and a considerable percentage were medical care users (n = 1,309, 64.5%). Non-medical professionals were less tolerant of uncertainty than nurses, and uncertainty scores were associated with medical care usage, occupation, and population size of the residential area. CONCLUSIONS Our findings revealed variations in perceptions of uncertainty in medical care between non-medical professionals and medical care providers. To mitigate conflicts related to medical issues, medical care providers should enhance non-medical professionals' education regarding perceptions of uncertainty in medical care.
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Affiliation(s)
- Naomi Akiyama
- School of Nursing, Nagoya City University, Nagoya, JPN
| | - Shihoko Kajiwara
- School of Nursing, Gifu University of Health Sciences, Gifu, JPN
| | - Ryuji Uozumi
- Department of Industrial Engineering and Economics, School of Engineering, Tokyo Institute of Technology, Tokyo, JPN
| | - Tomoya Akiyama
- Center for Postgraduate Clinical Training and Career Development, Nagoya University Hospital, Nagoya, JPN
| | - Kenshi Hayashida
- Department of Medical Informatics and Management, University Hospital of Occupational and Environmental Health, Kitakyushu, JPN
| | - Jasmine Sim
- National Institute of Education, Nanyang Technological University, Singapore, SGP
| | - Mie Morikawa
- Department of Policy Studies, College of Policy Studies, Tsuda Unversity, Tokyo, JPN
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17
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Beresford CJ, Gelling L, Baron S, Thompson L. The experiences of people with liver disease of palliative and end-of-life care in the United Kingdom-A systematic literature review and metasynthesis. Health Expect 2024; 27:e13893. [PMID: 37855242 PMCID: PMC10768859 DOI: 10.1111/hex.13893] [Citation(s) in RCA: 6] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/25/2023] [Revised: 08/03/2023] [Accepted: 10/06/2023] [Indexed: 10/20/2023] Open
Abstract
BACKGROUND Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end-of-life care experiences of people with liver disease in the United Kingdom. METHOD A systematic review was conducted using a five-stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). RESULTS Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end-of-life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person-centred care as an important feature. CONCLUSION This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person-centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end-of-life. PATIENT AND PUBLIC CONTRIBUTION An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic.
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Affiliation(s)
- Cathy J. Beresford
- Department of Nursing ScienceFaculty of Health and Social Sciences, Bournemouth UniversityBournemouthUK
| | - Leslie Gelling
- Department of Nursing ScienceFaculty of Health and Social Sciences, Bournemouth UniversityBournemouthUK
| | - Sue Baron
- Department of Nursing ScienceFaculty of Health and Social Sciences, Bournemouth UniversityBournemouthUK
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18
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Woodland H, Buchanan RM, Pring A, Dancox M, McCune A, Forbes K, Verne J. Inequity in end-of-life care for patients with chronic liver disease in England. Liver Int 2023; 43:2393-2403. [PMID: 37519025 DOI: 10.1111/liv.15684] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/28/2022] [Revised: 06/05/2023] [Accepted: 07/17/2023] [Indexed: 08/01/2023]
Abstract
BACKGROUND AND AIMS The World Health Assembly recommends integration of palliative care into treatment of patients with any life-limiting condition, yet patients with non-malignant disease are less likely to receive specialist palliative care (SPC). This study compares SPC offered to patients with hepatocellular carcinoma (HCC) versus patients with chronic liver disease without HCC (CLD without HCC). METHODS Patients who died from CLD or HCC over 5 years (2013-2017) in England were identified using a dataset linking national data on all hospital admissions (Hospital Episode Statistics - HES) with national mortality data from the Office for National Statistics (HES - ONS). The primary outcome was the proportion of patients who received inpatient SPC in their last year of life (LYOL). Secondary outcomes were (1) early inpatient SPC input and (2) the proportion dying in a hospice. The outcomes were compared between patients with HCC and CLD without HCC. RESULTS 29 669 patients were identified, 8143 of whom had HCC. Patients with HCC were significantly more likely to receive inpatient SPC input-adjusted OR 3.74 (95% CI 3.52-3.97) and early inpatient SPC input-adjusted OR 7.26 (95% CI 6.38-8.25) and die in a hospice OR 8.23 (95% CI 7.33-9.24) than patients with CLD without HCC. CONCLUSIONS These data highlight the stark inequity in access to SPC services between patients with HCC and patients with CLD without HCC in England. Addressing these inequities will improve end-of-life care for patients with CLD.
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Affiliation(s)
- Hazel Woodland
- Department of Population Health Sciences, University of Bristol, Bristol, UK
- Gastrointestinal Unit, Salisbury NHS Foundation Trust, Salisbury, UK
| | - Ryan M Buchanan
- Faculty of Medicine, University of Southampton, Southampton, UK
| | - Andy Pring
- Office for Health Improvement and Disparities, Department of Health and Social Care, London, UK
| | - Mark Dancox
- Office for Health Improvement and Disparities, Department of Health and Social Care, London, UK
| | - Anne McCune
- Department of Hepatology, University Hospitals Bristol and Weston NHS Foundation Trust, Bristol, UK
| | - Karen Forbes
- Department of Population Health Sciences, University of Bristol, Bristol, UK
| | - Julia Verne
- Office for Health Improvement and Disparities, Department of Health and Social Care, London, UK
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19
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Allen MJ, Doran R, Brain D, Powell EE, O'Beirne J, Valery PC, Barnett A, Hettiarachchi R, Hickman IJ, Kularatna S. A discrete choice experiment to elicit preferences for a liver screening programme in Queensland, Australia: a mixed methods study to select attributes and levels. BMC Health Serv Res 2023; 23:950. [PMID: 37670274 PMCID: PMC10481473 DOI: 10.1186/s12913-023-09934-2] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/03/2022] [Accepted: 08/17/2023] [Indexed: 09/07/2023] Open
Abstract
BACKGROUND In Australia, the overall prevalence of liver disease is increasing. Maximising uptake of community screening programmes by understanding patient preferences is integral to developing consumer-centred care models for liver disease. Discrete choice experiments (DCEs) are widely used to elicit preferences for various healthcare services. Attribute development is a vital component of a well-designed DCE and should be described in sufficient detail for others to assess the validity of outcomes. Hence, this study aimed to create a list of potential attributes and levels which can be used in a DCE study to elicit preferences for chronic liver disease screening programmes. METHODS Key attributes were developed through a multi-stage, mixed methods design. Focus groups were held with consumers and health care providers on attributes of community screening programmes for liver disease. Stakeholders then prioritised attributes generated from the focus group in order of importance via an online prioritisation survey. The outcomes of the prioritisation exercise were then reviewed and refined by an expert panel to ensure clinically meaningful levels and relevance for a DCE survey. RESULTS Fifteen attributes were generated during the focus group sessions deemed necessary to design liver disease screening services. Outcomes of the prioritisation exercise and expert panel stages recognised five attributes, with three levels each, for inclusion in a DCE survey to elicit consumer preferences for community screening for liver disease. This study also highlights broader social issues such as the stigma around liver disease that require careful consideration by policy makers when designing or implementing a liver screening programme. CONCLUSIONS The attributes and levels identified will inform future DCE surveys to understand consumer preferences for community screening programmes for liver disease. In addition, the outcomes will help inform the implementation of the LOCATE-NAFLD programme in real-world practice, and could be relevant for other liver and non-liver related chronic disease screening programmes.
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Affiliation(s)
- Michelle J Allen
- Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public health and Social Work, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia.
| | - Rachael Doran
- Department of Economics and Related Studies, University of York, York, UK
| | - David Brain
- Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public health and Social Work, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia
| | - Elizabeth E Powell
- The University of Queensland, St Lucia, QLD, Australia
- Centre for Liver Disease Research, Translational Research Institute, Faculty of Medicine, The University of Queensland, Woolloongabba, QLD, Australia
- Department of Gastroenterology and Hepatology, Princess Alexandra Hospital, Woolloongabba, QLD, Australia
| | - James O'Beirne
- University of the Sunshine Coast, Maroochydore DC, QLD, Australia
- Sunshine Coast University Hospital, Birtinya, QLD, Australia
| | | | - Adrian Barnett
- Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public health and Social Work, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia
| | | | - Ingrid J Hickman
- The University of Queensland, St Lucia, QLD, Australia
- Department of Nutrition and Dietetics, Princess Alexandra Hospital, Woolloongabba, QLD, Australia
| | - Sanjeewa Kularatna
- Australian Centre for Health Services Innovation and Centre for Healthcare Transformation, School of Public health and Social Work, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia
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20
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Pergolizzi D, Crespo I. The past and future of uncertainty in advanced illness: a systematic scoping review of underlying cognitive processes. ANXIETY, STRESS, AND COPING 2023; 36:415-433. [PMID: 36264678 DOI: 10.1080/10615806.2022.2134566] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 05/03/2022] [Revised: 10/03/2022] [Accepted: 10/03/2022] [Indexed: 11/06/2022]
Abstract
BACKGROUND To explain what cognitive capacity shapes uncertainty in advanced illness by identifying the types of evidence, mapping underlying cognitive processes to uncertainty, and outlining future directions for research and interventions. DESIGN A systematic scoping review of mixed study designs was carried out following the methodological framework of Arksey and O'Malley (2005) and using qualitative content analysis. METHODS PubMed, CINAHL, Embase, and PsycINFO were searched for original studies published in full and in English through December 2021 that reported on uncertainty in illness and related cognitions, cognitive science, or cognitive functions. RESULTS After screening 978, 18 articles met the inclusion criteria for review. We found the cognitive capacity of mental time travel - to relive the past or foresee life in the future - interacted with episodic memory retrieval to inform decision-making, and prospection to imagine, predict or prepare for future outcomes to determine lesser or greater uncertainty in advanced illness. CONCLUSIONS Mental time travel is a fundamental cognitive function when the future is limited by an advanced illness, to review life as a meaningful narrative. The role of mental time travel to construct or make sense of uncertain futures inherent in advanced illness can inform theory and targets for intervention.
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Affiliation(s)
- Denise Pergolizzi
- School of Medicine and Health Sciences, Universitat Internacional de Catalunya (UIC), Barcelona, Spain
| | - Iris Crespo
- Department of Basic Sciences, School of Medicine and Health Sciences, Universitat Internacional de Catalunya (UIC), Barcelona, Spain
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21
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Davis S, Higgs P, Jones L, Greenslade L, Wilson J, Low JT. "I am in other people's hands as regards my health" A sociological critique of health care encounters of people with cirrhosis. A secondary analysis. Chronic Illn 2023; 19:102-117. [PMID: 34812061 PMCID: PMC9841472 DOI: 10.1177/17423953211058422] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/19/2023]
Abstract
OBJECTIVES People with cirrhosis are encouraged to participate in shared decision-making with their doctors, but studies suggest that doctors limit the amount of information that is shared. In this study we explore the presence of medical power in clinical encounters in 2015 from a patient perspective and highlight its effects on healthcare interactions. METHODS Qualitative semi-structured interviews were conducted with ten people with cirrhosis attending a tertiary liver transplant centre in southern England. We explored their understanding of their disease and prognosis, and their participation in decision-making. Using the lens of medical power as a framework, we analysed findings into thematic sentences to summarise key ideas whilst preserving the complexity of identified concepts. RESULTS Three key concepts explained patient perspectives of their communication with doctors: (1) portraying a positive image to doctors, (2) avoiding confrontation with doctors, (3) feeling powerless in the face of doctors' medical knowledge. These concepts show deeper dynamic issues of power during healthcare encounters, illustrated by participants' reluctance to voice their concerns and express themselves, challenge decisions, or seek information. CONCLUSION People with cirrhosis struggle to articulate their concerns or challenge decisions on their care and treatment and may worry about potential consequences. Our findings demonstrate the continuing persistence of issues of power at play in contemporary health care.
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Affiliation(s)
- Sarah Davis
- Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
| | - Paul Higgs
- Division of Psychiatry, University College London, London, UK
| | - Louise Jones
- Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
| | | | - Jo Wilson
- Department of Palliative Care, 4965Royal Free London NHS Foundation Trust, London, UK
| | - Joseph Ts Low
- Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
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22
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Barber T, Toon L, Tandon P, Green LA. Exploring provider roles, continuity, and mental models in cirrhosis care: A qualitative study. CANADIAN LIVER JOURNAL 2023; 6:14-23. [PMID: 36908575 PMCID: PMC9997517 DOI: 10.3138/canlivj-2022-0020] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/25/2022] [Accepted: 06/19/2022] [Indexed: 11/20/2022]
Abstract
BACKGROUND: Advanced cirrhosis results in frequent emergency department visits, hospital admissions and readmissions, and a high risk of premature death. We previously identified and compared differences in the mental models of cirrhosis care held by primary and specialty care physicians and nurse practitioners that may be addressed to improve coordination and transitions in care. The aim of this paper is to further explore how challenges to continuity and coordination of care influence how health care providers adapt in their approaches to and development of mental models of cirrhosis care. METHODS: Cross-sectional formal elicitation of mental models using Cognitive Task Analysis. Purposive and chain-referral sampling took place over 6 months across Alberta for a total of 19 participants, made up of family physicians (n = 8), specialists (n = 9), and cirrhosis nurse practitioners (n = 2). RESULTS: Lack of continuity in cirrhosis care, particularly informational and management continuity, not only hinders health care providers' ability to develop rich mental models of cirrhosis care but may also determine whether they form a patient-centred or task-based mental model, and whether they develop shared mental models with other providers. CONCLUSIONS: The system barriers and gaps that prevent the level of continuity needed to coordinate care for people with cirrhosis lead providers to create and work under mental models that perpetuate those barriers, in a vicious cycle. Understanding how providers approach cirrhosis care, adapt to the challenges facing them, and develop mental models offers insights into how to break that cycle and improve continuity and coordination.
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Affiliation(s)
- Tanya Barber
- Department of Family Medicine, University of Alberta, Edmonton, Alberta, Canada
| | - Lynn Toon
- Accelerating Change Transformations Team, Alberta Medical Association, Edmonton, Alberta, Canada
| | - Puneeta Tandon
- Division of Gastroenterology (Liver Unit), Zeidler Ledcor Centre, Edmonton, Alberta, Canada.,Faculty of Medicine, University of Alberta, Edmonton, Alberta, Canada
| | - Lee A Green
- Department of Family Medicine, University of Alberta, Edmonton, Alberta, Canada.,Kaye Edmonton Clinic, Edmonton, Alberta, Canada
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23
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Patel AA, Arnold RM, Taddei TH, Woodrell CD. "Am I Going to Die?": Delivering Serious News to Patients With Liver Disease. Gastroenterology 2023; 164:177-181. [PMID: 36379246 PMCID: PMC10662545 DOI: 10.1053/j.gastro.2022.11.006] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/08/2022] [Revised: 11/08/2022] [Accepted: 11/08/2022] [Indexed: 11/13/2022]
Affiliation(s)
- Arpan A Patel
- Vatche and Tamar Manoukian Division of Digestive Diseases, David Geffen School of Medicine at UCLA, Los Angeles, California; Department of Medicine, Greater Los Angeles VA Healthcare System, Los Angeles, California.
| | - Robert M Arnold
- Division of General Internal Medicine, Section of Palliative Care and Medical Ethics, Palliative Care Research Center, University of Pittsburgh School of Medicine, Palliative and Supportive Institute, UPMC Health System, Pittsburgh, Pennsylvania
| | - Tamar H Taddei
- Division of Digestive Diseases, Yale University School of Medicine, New Haven, Connecticut; VA Connecticut Healthcare System, West Haven, Connecticut
| | - Christopher D Woodrell
- Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York; Geriatric Research, Education and Clinical Center, James J. Peters Veterans Affairs Medical Center, Bronx, New York
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24
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Jordan RI, ElMokhallalati Y, Corless L, Bennett M. Quality of end-of-life care with non-malignant liver disease: Analysis of the VOICES National Survey of Bereaved People. Liver Int 2023; 43:308-316. [PMID: 36114763 PMCID: PMC10087137 DOI: 10.1111/liv.15428] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/24/2022] [Revised: 08/25/2022] [Accepted: 09/12/2022] [Indexed: 01/25/2023]
Abstract
BACKGROUND AND AIMS Patients with liver disease struggle to access palliative care. We aimed to compare carers' perceptions of end-of-life care for decedents with non-malignant liver disease, malignant liver disease and other non-malignant diseases, and to identify associated factors in non-malignant liver disease. METHODS A retrospective analysis of individual-level data from the National Survey of Bereaved People 2011-2015. RESULTS More decedents with non-malignant liver disease died in hospital than other diseases (76.9% vs. 40.9% vs. 50.2%, p < .001), despite 89% wishing to die at home. Fewer decedents received home/hospice specialist palliative care compared with those with malignant liver disease (10.0% vs. 54.6%, p < .001). Carers of decedents with non-malignant liver disease were less likely to rate overall end-of-life care quality as outstanding/excellent (29.3% vs. 43.9% vs. 42.3%, p < .001). For this group, poorer care was associated with younger (65-74 vs. 18-64 years, OR [odds ratio] 1.39, p = .01), more socially deprived decedents (OR .78, p = .02), and better care with greater social support (OR 1.82, p < .001) and community specialist palliative care involvement (OR 1.80, p < .001). There was no association between outstanding/excellent rating and underlying cause of non-malignant liver disease (alcohol-related vs. non-alcohol-related, p = .92) or place of death (hospital vs. non-hospital, p = .476). CONCLUSIONS End-of-life care could be improved by integrating hepatology and community services, particularly specialist palliative care, and advance care planning to facilitate care and death (where desired) at home. However, death in hospital may be appropriate for those with non-malignant liver disease.
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Affiliation(s)
- Roberta I Jordan
- Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
| | - Yousuf ElMokhallalati
- Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
| | | | - Michael Bennett
- Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK
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25
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Abasseri M, Hoque S, Slavica Kochovska BA, Caldwell K, Sheahan L, Zekry A. Barriers to palliative care in hepatocellular carcinoma: A review of the literature. J Gastroenterol Hepatol 2023. [PMID: 36634200 DOI: 10.1111/jgh.16107] [Citation(s) in RCA: 7] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/20/2022] [Revised: 01/09/2023] [Accepted: 01/11/2023] [Indexed: 01/14/2023]
Abstract
Hepatocellular carcinoma (HCC) is a deadly and burdensome form of liver cancer with an increasing global prevalence. Its course is unpredictable as it frequently occurs in the context of underlying end-stage liver disease, and the associated symptoms and adverse effects of treatment cause severe suffering for patients. Palliative care (PC) is a medical specialty that addresses the physical, emotional, and spiritual needs of patients and their carers in the context of life-limiting illness. In other cancers, a growing body of evidence has demonstrated that the early introduction of PC at diagnosis improves patient and carer outcomes. Despite this, the integration of palliative care at the diagnosis of HCC remains suboptimal, as patients usually receive PC only at the very terminal phase of their disease, even when diagnosed early. Significant barriers to the uptake of palliative care in the treatment algorithm of hepatocellular carcinoma fall under four main themes: data limitations, disease, clinician, and patient factors. Barriers relating to data limitations mainly encapsulated the risk of bias inherent in published work in the field of PC. Clinician-reported barriers related to negative attitudes towards PC and a lack of time for PC discussions. Barriers related to the disease align with prognostic uncertainty due to the unpredictable course of HCC. Significantly, there exists a paucity of evidence exploring patient-perceived barriers to timely PC implementation in HCC. Given that patients are often the underrepresented stakeholder in the delivery of PC, future research should explore the patient perspective in adequately designed qualitative studies as the first step.
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Affiliation(s)
- Mostafa Abasseri
- School of Medicine and Health, UNSW, Sydney, New South Wales, Australia
| | - Shakira Hoque
- Gastroenterology and Hepatology Department, St George Hospital, Sydney, New South Wales, Australia
| | - B A Slavica Kochovska
- Faculty of Science, Medicine and Health, University of Wollongong, Wollongong, New South Wales, Australia.,IMPACCT, Faculty of Health, University of Technology, Sydney, New South Wales, Australia
| | - Kim Caldwell
- Palliative Medicine, Calvary Hospital Kogarah, Kogarah, New South Wales, Australia
| | - Linda Sheahan
- Clinical Ethics Service, South Eastern Sydney Local Health District, Randwick, New South Wales, Australia.,Sydney Health Ethics, The University of Sydney, Camperdown, New South Wales, Australia.,UNSW Medicine & Health, St George and Sutherland Clinical Campus.,Palliative Medicine Department, St George Hospital, Sydney, New South Wales, Australia
| | - Amany Zekry
- School of Medicine and Health, UNSW, Sydney, New South Wales, Australia.,Gastroenterology and Hepatology Department, St George Hospital, Sydney, New South Wales, Australia.,UNSW Medicine & Health, St George and Sutherland Clinical Campus
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26
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Ozawa N, Sato K, Sugimura A, Maki S, Tanaka T, Yamamoto K, Ito T, Ishizu Y, Kuzuya T, Honda T, Ishigami M, Fujishiro M, Ishikawa T, Ando S. Effect of illness uncertainty on alanine transaminase levels and aspartate aminotransferase levels in patients with nonalcoholic fatty liver disease. NAGOYA JOURNAL OF MEDICAL SCIENCE 2022; 84:857-864. [PMID: 36544609 PMCID: PMC9748319 DOI: 10.18999/nagjms.84.4.857] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Subscribe] [Scholar Register] [Received: 10/15/2021] [Accepted: 01/04/2022] [Indexed: 12/24/2022]
Abstract
Patients with nonalcoholic fatty liver disease (NAFLD) have illness uncertainty. The purpose of this longitudinal study was to investigate the effect of the degree of illness uncertainty in patients with NAFLD on liver function values. We conducted a questionnaire survey and collected blood samples from outpatients with NAFLD. The items in the questionnaire were measured for illness uncertainty using the Japanese version of the Mishel Uncertainty in Illness Scale-Community (MUIS-C). Blood samples were collected at baseline and after 1 year. We divided the patients into two groups: one with high illness uncertainty and the other with low illness uncertainty. We then compared changes in alanine transaminase (ALT) and aspartate aminotransferase (AST) levels over time from baseline using multiple regression analysis. This study analyzed 148 patients with NAFLD; 75 were male and 73 were female, with a mean age of 58.4 ± 12.3 years. The group with higher illness uncertainty had significantly higher ALT and AST levels at 1 year (β = .185 and .183, respectively) than the group with lower illness uncertainty. High illness uncertainty in patients with NAFLD can lead to higher ALT and AST levels. Healthcare providers must focus on reducing illness uncertainty in patients with NAFLD.
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Affiliation(s)
- Naoki Ozawa
- School of Nursing, Ichinomiya Kenshin College, Ichinomiya, Japan
| | - Kazuki Sato
- Nursing for Advanced Practice, Division of Integrated Health Sciences, Nagoya University Graduate School of Medicine, Nagoya, Japan
| | - Ayumi Sugimura
- Nursing for Advanced Practice, Division of Integrated Health Sciences, Nagoya University Graduate School of Medicine, Nagoya, Japan
| | - Shigeyoshi Maki
- Nursing Course, Gifu University School of Medicine, Gifu, Japan
| | - Taku Tanaka
- Department of Emergency and Critical Care Medicine, Nagoya University Hospital, Nagoya, Japan
| | - Kenta Yamamoto
- Department of Diagnostic and Therapeutic Endoscopy, Nagoya University Hospital, Nagoya, Japan
| | - Takanori Ito
- Department of Gastroenterology and Hepatology, Nagoya University Graduate School of Medicine, Nagoya, Japan
| | - Yoji Ishizu
- Department of Gastroenterology and Hepatology, Nagoya University Graduate School of Medicine, Nagoya, Japan
| | - Teiji Kuzuya
- Department of Gastroenterology and Hepatology, Fujita Health University, Toyoake, Japan
| | - Takashi Honda
- Department of Gastroenterology and Hepatology, Nagoya University Graduate School of Medicine, Nagoya, Japan
| | - Masatoshi Ishigami
- Department of Gastroenterology and Hepatology, Nagoya University Graduate School of Medicine, Nagoya, Japan
| | - Mitsuhiro Fujishiro
- Department of Gastroenterology and Hepatology, Nagoya University Graduate School of Medicine, Nagoya, Japan
,Department of Gastroenterology, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan
| | - Tetsuya Ishikawa
- Omics Health Sciences, Division of Integrated Health Sciences, Nagoya University Graduate School of Medicine, Nagoya, Japan
| | - Shoko Ando
- Nursing for Advanced Practice, Division of Integrated Health Sciences, Nagoya University Graduate School of Medicine, Nagoya, Japan
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Drysdale K, Rance J, Cama E, Treloar C, Mao L. What is known about the care and support provided for an ageing population with lived experience of chronic viral hepatitis as they near end-of-life: A scoping review. HEALTH & SOCIAL CARE IN THE COMMUNITY 2022; 30:e3775-e3788. [PMID: 36259240 PMCID: PMC10092025 DOI: 10.1111/hsc.14066] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 11/02/2021] [Revised: 06/09/2022] [Accepted: 10/01/2022] [Indexed: 06/16/2023]
Abstract
Ageing with a chronic hepatitis B (HBV) or hepatitis C (HCV) infection is an emerging public health priority. For people living with chronic viral hepatitis, their disease progression into old age is both underpinned by their existing blood borne virus and the potential emergence of other infectious and non-infectious conditions. These twinned pathways bring additional challenges to the care and support for people as they near end of life. This scoping review sought to examine what is known about the experiences of the end-of-life phase of an increasing population ageing with HBV and HCV in studies conducted in high-income settings and published in peer reviewed literature (2010-2021). In interpreting this literature, we found that challenges in determining the end-of life phase for people with lived experience of HBV or HCV are exacerbated by the conflation of aetiologies into a singular diagnosis of end-stage liver disease. Studies overwhelmingly reported the clinical aspects of end-of-life care (i.e. prognosis assessment and symptom management) with less attention paid to educative aspects (i.e. advance care directives and surrogate decision makers, discussion of treatment options and determining goals of care). Psychosocial interventions (i.e. quality of life beyond symptom management, including emotional/spiritual support and family and bereavement support) received limited attention in the literature, though there was some recognition that psychosocial interventions should be part of end-of-life care provision. Given the focus on the prominent disease presentation of liver cirrhosis and/or end-stage liver disease, the social and cultural dimensions of these infections have received less attention in the literature on end-of-life in the context of chronic viral hepatitis.
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Affiliation(s)
- Kerryn Drysdale
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
| | - Jake Rance
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
| | - Elena Cama
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
| | - Carla Treloar
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
| | - Limin Mao
- Centre for Social Research in HealthUNSW SydneySydneyAustralia
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Norman EML, Weil J, Philip J. Hepatocellular carcinoma and its impact on quality of life: A review of the qualitative literature. Eur J Cancer Care (Engl) 2022; 31:e13672. [PMID: 35974658 PMCID: PMC9786637 DOI: 10.1111/ecc.13672] [Citation(s) in RCA: 14] [Impact Index Per Article: 4.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/20/2022] [Revised: 07/08/2022] [Accepted: 07/28/2022] [Indexed: 12/30/2022]
Abstract
INTRODUCTION Hepatocellular carcinoma (HCC) carries significant burden of disease, with high mortality rates and poor prognosis. It is therefore important to consider quality of life (QoL) for patients with HCC. Quantitative research assesses HCC and QoL via standardised measurement tools, but these do not capture the full scope of patient experiences. This review examines the body of qualitative research on this topic, to develop a comprehensive understanding of QoL for this population. METHODS Medline, EMBASE and PsycINFO were systematically searched with keywords relating to HCC, QoL and patient experience. After applying inclusion and exclusion criteria, key findings of included studies were extracted and analysed for themes. RESULTS Eleven studies were included for thematic analysis, with five themes identified as central to QoL: (1) burden of physical symptoms and treatment side effects; (2) psychological impact and coping strategies; (3) social function and stigma; (4) spiritual wellbeing, sense of self and meaning of illness and (5) pervasive uncertainty. CONCLUSION HCC profoundly impacted patients' lives, spanning physical, psychological, social and spiritual QoL domains. While QoL was reduced overall, some features of patient experiences that enhanced QoL were noted. The findings complement data from quantitative studies, helping to build a richer understanding of QoL.
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Affiliation(s)
- Eleanor M. L. Norman
- Palliative Nexus Group, Department of MedicineUniversity of Melbourne at St Vincent's HospitalMelbourneAustralia
| | - Jennifer Weil
- Palliative Nexus Group, Department of MedicineUniversity of Melbourne at St Vincent's HospitalMelbourneAustralia
| | - Jennifer Philip
- Palliative Nexus Group, Department of MedicineUniversity of Melbourne at St Vincent's HospitalMelbourneAustralia
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Santiago-Rodriguez EI, Maiorana A, Peluso MJ, Hoh R, Tai V, Fehrman EA, Hernandez Y, Torres L, Spinelli MA, Gandhi M, Kelly JD, Martin JN, Henrich TJ, Deeks SG, Sauceda JA. Characterizing the COVID-19 Illness Experience to Inform the Study of Post-acute Sequelae and Recovery. Int J Behav Med 2022; 29:610-623. [PMID: 34918211 PMCID: PMC8675303 DOI: 10.1007/s12529-021-10045-7] [Citation(s) in RCA: 10] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/24/2021] [Indexed: 11/25/2022]
Abstract
BACKGROUND There is an urgent need to fully understand the impact of variable COVID-19 experiences and the optimal management of post-acute sequelae of SARS-CoV-2 infection. We characterized the variability in the acute illness experience and ongoing recovery process from participants in a COVID-19 recovery cohort study in Northern California in 2020. METHOD We completed 24 semi-structured in-depth interviews with adults with confirmed positive SARV-CoV-2 nucleic acid amplification test result, had recovered or were recovering from acute infection, and underwent serial evaluations. We purposefully sampled English- and Spanish-speaking adults with asymptomatic, mild, and severe symptomatic infection, including those who were hospitalized and those with HIV co-infection. We used a thematic analysis to analyze interviews and identify salient themes. RESULTS After integrating the thematic analysis with clinical data, we identified key themes: (1) across symptom profiles and severity, experiencing COVID-19 was associated with psychological distress; (2) symptomatic infection carried uncertainty in symptom presentation and ongoing recovery (e.g., long COVID); and (3) health information-seeking behavior was facilitated by access to medical care and uncertainty with the recovery process. CONCLUSION Our data informs the emerging field of "long COVID" research and shows a need to provide information and continuous support to persons with post-acute sequelae to ensure they feel secure along the path to recovery.
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Affiliation(s)
- Edda I Santiago-Rodriguez
- Center for AIDS Prevention Studies, University of California, San Francisco, 550 16th Street, 3rd Floor, San Francisco, CA, 94158, USA
| | - Andres Maiorana
- Center for AIDS Prevention Studies, University of California, San Francisco, 550 16th Street, 3rd Floor, San Francisco, CA, 94158, USA
| | - Michael J Peluso
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Rebecca Hoh
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Viva Tai
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Emily A Fehrman
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Yanel Hernandez
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Leonel Torres
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Matthew A Spinelli
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Monica Gandhi
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - J Daniel Kelly
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Jeffrey N Martin
- Department of Epidemiology and Biostatistics, University of California, San Francisco, San Francisco, CA, USA
| | - Timothy J Henrich
- Division of Experimental Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - Steven G Deeks
- Division of HIV, ID and Global Medicine, University of California, San Francisco, San Francisco, CA, USA
| | - John A Sauceda
- Center for AIDS Prevention Studies, University of California, San Francisco, 550 16th Street, 3rd Floor, San Francisco, CA, 94158, USA.
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30
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Arney J, Gray C, Walling AM, Clark JA, Smith D, Melcher J, Asch S, Kanwal F, Naik AD. Two mental models of integrated care for advanced liver disease: qualitative study of multidisciplinary health professionals. BMJ Open 2022; 12:e062836. [PMID: 36691142 PMCID: PMC9445787 DOI: 10.1136/bmjopen-2022-062836] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/19/2022] [Accepted: 08/16/2022] [Indexed: 01/26/2023] Open
Abstract
OBJECTIVES The purpose of this paper is to present two divergent mental models of integrated advanced liver disease (AdvLD) care among 26 providers who treat patients with AdvLD. SETTING 3 geographically dispersed United States Veterans Health Administration health systems. PARTICIPANTS 26 professionals (20 women and 6 men) participated, including 9 (34.6%) gastroenterology, hepatology, and transplant physicians, 2 (7.7%) physician assistants, 7 (27%) nurses and nurse practitioners, 3 (11.5%) social workers and psychologists, 4 (15.4%) palliative care providers and 1 (3.8%) pharmacist. MAIN OUTCOME MEASURES We conducted qualitative in-depth interviews of providers caring for patients with AdvLD. We used framework analysis to identify two divergent mental models of integrated AdvLD care. These models vary in timing of initiating various constituents of care, philosophy of integration, and supports and resources needed to achieve each model. RESULTS Clinicians described integrated care as an approach that incorporates elements of curative care, symptom and supportive care, advance care planning and end-of-life services from a multidisciplinary team. Analysis revealed two mental models that varied in how and when these constituents are delivered. One mental model involves sequential transitions between constituents of care, and the second mental model involves synchronous application of the various constituents. Participants described elements of teamwork and coordination supports necessary to achieve integrated AdvLD care. Many discussed the importance of having a multidisciplinary team integrating supportive care, symptom management and palliative care with liver disease care. CONCLUSIONS Health professionals agree on the constituents of integrated AdvLD care but describe two competing mental models of how these constituents are integrated. Health systems can promote integrated care by assembling multidisciplinary teams, and providing teamwork and coordination supports, and training that facilitates patient-centred AdvLD care.
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Affiliation(s)
- Jennifer Arney
- Department of Sociology, University of Houston Clear Lake, Houston, Texas, USA
- VA HSR&D Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas, USA
| | - Caroline Gray
- Center for Innovation to Implementation, Veterans Affairs Palo Alto Health Care System, Palo Alto, California, USA
| | - Anne M Walling
- Veterans Affairs Greater Los Angeles Healthcare System, Los Angeles, California, USA
- Department of Medicine, Division of General Internal Medicine and Health Services Research, University of California at Los Angeles, Los Angeles, California, USA
| | - Jack A Clark
- Center for Health Quality, Outcomes, and Economic Research, Edith Nourse Rogers Memorial Veterans Hospital, Bedford, Massachusetts, USA
- Department of Health Law, Policy, and Management, Boston University School of Public Health, Boston, Massachusetts, USA
| | - Donna Smith
- VA HSR&D Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas, USA
- Department of Medicine, Section of Health Services Research, Baylor College of Medicine, Houston, Texas, USA
| | - Jennifer Melcher
- VA HSR&D Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas, USA
- Department of Medicine, Section of Health Services Research, Baylor College of Medicine, Houston, Texas, USA
| | - Steven Asch
- Center for Innovation to Implementation, Veterans Affairs Palo Alto Health Care System, Palo Alto, California, USA
- Division of General Medical Disciplines, Stanford School of Medicine, Stanford, California, USA
| | - Fasiha Kanwal
- VA HSR&D Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas, USA
- Department of Medicine, Section of Health Services Research, Baylor College of Medicine, Houston, Texas, USA
- Department of Medicine, Section of Gastroenterology and Hepatology, Baylor College of Medicine, Houston, Texas, USA
| | - Aanand D Naik
- VA HSR&D Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas, USA
- Department of Medicine, Section of Health Services Research, Baylor College of Medicine, Houston, Texas, USA
- University of Texas Health Consortium on Aging, University of Texas Health Science Center, Houston, Texas, USA
- Department of Management, Policy, and Community Health, School of Public Health, University of Texas Health Science Center, Houston, Texas, USA
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Pippard B, Bhatnagar M, McNeill L, Donnelly M, Frew K, Aujayeb A. Hepatic Hydrothorax: A Narrative Review. Pulm Ther 2022; 8:241-254. [PMID: 35751800 PMCID: PMC9458779 DOI: 10.1007/s41030-022-00195-8] [Citation(s) in RCA: 8] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/23/2022] [Accepted: 06/01/2022] [Indexed: 12/10/2022] Open
Abstract
Hepatic hydrothorax (HH) represents a distinct clinical entity within the broader classification of pleural effusion that is associated with significant morbidity and mortality. The median survival of patients with cirrhosis who develop HH is 8-12 months. The diagnosis is typically made in the context of advanced liver disease and ascites, in the absence of underlying cardio-pulmonary pathology. A multi-disciplinary approach to management, involving respiratory physicians, hepatologists, and palliative care specialists is crucial to ensuring optimal patient-centered care. However, the majority of accepted therapeutic options are based on expert opinion rather than large, adequately powered randomized controlled trials. In this narrative review, we discuss the epidemiology, pathophysiology, clinical characteristics, and management of HH, highlighting the use of salt restriction and diuretic therapy, porto-systemic shunts, and liver transplantation. We include specific sections focusing on the role of pleural interventions and palliative care, respectively.
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Affiliation(s)
- Benjamin Pippard
- Department of Respiratory Medicine, South Tyneside and Sunderland NHS Foundation Trust, Sunderland, UK
| | - Malvika Bhatnagar
- Department of Respiratory Medicine, South Tyneside and Sunderland NHS Foundation Trust, Sunderland, UK
| | - Lisa McNeill
- Department of Hepatology, The Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
| | - Mhairi Donnelly
- Department of Hepatology, The Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
| | - Katie Frew
- Department of Palliative Medicine, Northumbria Healthcare NHS Foundation Trust, North Shields, UK
| | - Avinash Aujayeb
- Department of Respiratory Medicine, Northumbria Healthcare NHS Foundation Trust, North Shields, Northumbria Way, Northumberland, Cramlington, NE23 6NZ, UK.
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Gray C, Arney J, Clark JA, Walling AM, Kanwal F, Naik AD. The chosen and the unchosen: How eligibility for liver transplant influences the lived experiences of patients with advanced liver disease. Soc Sci Med 2022; 305:115113. [PMID: 35690034 DOI: 10.1016/j.socscimed.2022.115113] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/10/2022] [Revised: 05/31/2022] [Accepted: 06/03/2022] [Indexed: 02/07/2023]
Abstract
Advanced liver disease is often uncurable and fatal. Liver transplant is the only curative option for patients with advanced, irreversible liver disease, but the need for new livers far exceeds the supply. Patients with the greatest need as well as the greatest likelihood of benefit, based on a complex array of biomedical and psychosocial considerations, are prioritized for transplant. The opportunity to receive a life-saving surgery no doubt has enormous consequences for patients and their healthcare providers, as does the absence of that opportunity. But these consequences are poorly characterized, especially for patients deemed poor candidates for liver transplant. Through in-depth interviews with patients living with advanced liver disease and the providers who care for them, we explore how eligibility status affects illness experiences, including patients' interactions with clinicians, knowledge about their disease, expectations for the future, and efforts to come to terms with a life-limiting illness. We describe how the clinical and social requirements needed to secure eligibility for liver transplant lend themselves to a clinical and cultural logic that delineates "worthy" and "unworthy" patients. We describe how providers and candidates discuss the possibility of moral redemption for such patients through transplant surgeries, a discourse notably absent among patients not eligible for transplant.
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Affiliation(s)
- Caroline Gray
- Center for Innovation to Implementation, VA Palo Alto Health Care System, 795 Willow Road (152-MPD), Menlo Park, CA, 94025, USA.
| | - Jennifer Arney
- Department of Sociology, University of Houston-Clear Lake, 2700 Bay Area Boulevard, Houston, TX, 77058, USA; VA HSR&D Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, 2450 Holcombe Blvd Suite 01Y, Houston, TX, 77021, USA.
| | - Jack A Clark
- Department of Health Law, Policy, and Management, Boston University School of Public Health, 715 Albany Street, Boston, MA, 02118, USA.
| | - Anne M Walling
- VA Greater Los Angeles Healthcare System, 11301 Wilshire Blvd, Los Angeles, CA, 90073, USA; Department of Medicine, Division of General Internal Medicine and Health Services Research University of California at Los Angeles, 1100 Glendon Ave STE 850, Los Angeles, CA, 90024, USA.
| | - Fasiha Kanwal
- VA HSR&D Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, 2450 Holcombe Blvd Suite 01Y, Houston, TX, 77021, USA; Department of Medicine, Health Services Research and Gastroenterology and Hepatology, Baylor College of Medicine, 7200 Cambridge St., Houston, TX, 77030, USA.
| | - Aanand D Naik
- VA HSR&D Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, 2450 Holcombe Blvd Suite 01Y, Houston, TX, 77021, USA; Department of Medicine, Department of Health Services Research, Geriatrics and Palliative Medicine, Baylor College of Medicine, Houston, TX 7200 Cambridge St., Houston, TX, 77030, USA.
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Swan S, Meade R, Cavers D, Kimbell B, Lloyd A, Carduff E. Factors influencing adult carer support planning for unpaid caregiving at the end of life in Scotland: Qualitative insights from triangulated interviews and focus groups. HEALTH & SOCIAL CARE IN THE COMMUNITY 2022; 30:1422-1432. [PMID: 34427355 PMCID: PMC9290463 DOI: 10.1111/hsc.13472] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 07/12/2020] [Revised: 02/24/2021] [Accepted: 05/18/2021] [Indexed: 06/13/2023]
Abstract
Caring for a relative or friend at the end of life can be rewarding but all-encompassing. These caregivers are often not identified, meaning their diverse needs remain unmet, and the lack of assessment, support and planning increases the likelihood of crisis and burnout. The Carers (Scotland) Act 2016 places responsibility on local authorities to implement such a plan, which will be fast-tracked for carers supporting someone at the end of life. Our research described the factors which might influence this planning, triangulating primary focus groups with 15 carers and secondary qualitative data from transcripts with 30 carers, all of whom who had looked after someone with a terminal illness. Analysis was iterative, and constant comparative analysis of the secondary data informed the primary focus groups. Three main themes were identified; 1. The importance of early identification as a carer to enable timely assessment and support. 2. Carers experience isolation and loneliness which limits opportunities for support. 3. Responding in a timely fashion to carer assessment and support is vital to avoid crises. This research confirms that identifying carers early in the illness trajectory, ideally at diagnosis, is vital to avoid carer burnout. Health and social care providers have a key role in identification and should ensure, where possible, that carer needs are dynamically assessed, supported and documented. Finally, caring does not end after death, it extends into bereavement. Thus, we need to consider system and cultural change to ensure the experiences and needs of carers are addressed and valued.
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Affiliation(s)
| | | | - Debbie Cavers
- Usher InstituteUniversity of EdinburghOld Medical SchoolEdinburghUK
| | - Barbara Kimbell
- Usher InstituteUniversity of EdinburghOld Medical SchoolEdinburghUK
| | - Anna Lloyd
- Usher InstituteUniversity of EdinburghOld Medical SchoolEdinburghUK
- St Columba's HospiceEdinburghUK
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Wright M, Woodland H, Hudson B. Symptom control in advanced chronic liver disease: integrating anticipatory palliative and supportive care. Frontline Gastroenterol 2022; 13:e109-e115. [PMID: 35812032 PMCID: PMC9234743 DOI: 10.1136/flgastro-2022-102114] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/17/2022] [Accepted: 05/16/2022] [Indexed: 02/04/2023] Open
Abstract
The number of patients coming to hospital with liver disease is increasing. There was a worrying trend before the pandemic, and this has intensified. Despite improvements in the management of patients with advanced cirrhosis many patients will die within 6-12 months of first presentation, and, despite this, the field of palliative and supportive care in liver disease is still in its infancy. This is a narrative review. Evidence is often thin in this field. Where it exists it is cited, but much of the commentary here is based on the authors own experience and readers are free to consider it and debate it. Most patients who die of liver disease receive palliative care very late in their illness (if at all). There are many barriers to supportive and palliative care in liver disease which are discussed. Symptom control is often poor because of these barriers. Before symptomatic control can be established, patients in need of it must to be identified and conversations had about the severity of their situation and what their wishes would be. Interest in palliative and supportive care for patients liver disease is growing as is the number of hepatologists and palliative care clinicians within the UK with an interest. It is important that this enthusiasm and interest can be rolled out and scaled up across the UK so that all patients, wherever they are, can benefit. The aims of these articles are first to highlight and bring into focus the unmet need for palliative and supportive care in liver disease and second to provide suggestions for its integration into liver services. Ask yourself the question: where would I start in my hospital to help these patients?
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Affiliation(s)
- Mark Wright
- Hepatology, University Hospital Southampton, Southampton, UK
| | - Hazel Woodland
- Department of Gastroenterology, Salisbury District Hospital, Salisbury, UK
| | - Ben Hudson
- Hepatology, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK
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Koffman J, Penfold C, Cottrell L, Farsides B, Evans CJ, Burman R, Nicholas R, Ashford S, Silber E. "I wanna live and not think about the future" what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study. PLoS One 2022; 17:e0265861. [PMID: 35617268 PMCID: PMC9135191 DOI: 10.1371/journal.pone.0265861] [Citation(s) in RCA: 13] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/08/2022] [Accepted: 05/06/2022] [Indexed: 11/18/2022] Open
Abstract
BACKGROUND Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives. AIM To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP. METHODS We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. RESULTS Participants' narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions. CONCLUSION These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.
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Affiliation(s)
- Jonathan Koffman
- Hull York Medical School, Wolfson Palliative Care Research Centre, Hull, United Kingdom
- King’s College London, Cicely Saunders Institute, London, United Kingdom
| | - Clarissa Penfold
- Hull York Medical School, Wolfson Palliative Care Research Centre, Hull, United Kingdom
| | | | - Bobbie Farsides
- Brighton and Sussex Medical School, Brighton, United Kingdom
| | - Catherine J. Evans
- King’s College London, Cicely Saunders Institute, London, United Kingdom
| | - Rachel Burman
- King’s College Hospital NHS Foundation Trust, London, United Kingdom
| | - Richard Nicholas
- United Kingdom Multiple Sclerosis Tissue Bank, Burlington Danes, Imperial College London, London, United Kingdom
| | - Stephen Ashford
- King’s College London, Cicely Saunders Institute, London, United Kingdom
- Regional Hyper-Acute Rehabilitation Unit, Northwick Park Hospital, North West University, Harrow, United Kingdom
| | - Eli Silber
- King’s College Hospital NHS Foundation Trust, London, United Kingdom
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Kotha S, Berry P. The writing was on the wall: Decision making near the end of life in advanced liver disease. PROGRESS IN PALLIATIVE CARE 2022. [DOI: 10.1080/09699260.2022.2067702] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/18/2022]
Affiliation(s)
- Sreelakshmi Kotha
- Department of Gastroenterology, Guy’s and St Thomas’ Foundation Trust, London, UK
| | - Philip Berry
- Department of Gastroenterology, Guy’s and St Thomas’ Foundation Trust, London, UK
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Walavalkar A, Craswell A, Gray NA. Experiences of Caregivers of Patients With Conservatively Managed Kidney Failure: A Mixed Methods Systematic Review. Can J Kidney Health Dis 2022; 9:20543581221089080. [PMID: 35450152 PMCID: PMC9016578 DOI: 10.1177/20543581221089080] [Citation(s) in RCA: 6] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/15/2021] [Accepted: 02/07/2022] [Indexed: 11/24/2022] Open
Abstract
Background: Older people with kidney failure often choose conservative kidney care. The
experiences and quality of life (QOL) of caregivers who support them are
incompletely characterized. Objective: To determine the burden, QOL, and understand experiences of caregivers
supporting patients managed conservatively. Design: Systematic review of quantitative and qualitative studies. Sources of information: PubMed, Embase, PsycINFO, CINAHL, and MEDLINE electronic databases were
systematically searched for quantitative and qualitative studies published
between January 2000 and July 2020. Subjects: Caregivers of adults with kidney failure (estimated glomerular filtration
rate < 15 mL/min/1.73 m2) managed conservatively. Methods: Data were extracted by 2 independent reviewers using a prespecified
extraction tool. Study quality was assessed using the Critical Appraisal
Skills Program (CASP) tool. Measurements: Descriptive reports of demographics, measurement scales, and outcomes.
Thematic synthesis of qualitative data. Results: Six studies met inclusion criteria, including 3 quantitative and 3
descriptive qualitative studies. Caregivers of patients receiving
conservative kidney management (CKM) experienced significant caregiver
burden and similar impacts to their QOL as those caring for patients
receiving dialysis. Thematic synthesis revealed 5 themes: Understanding the
concept of CKM, Need for involvement in the decision for CKM, Identifying
available supports, Uncertainty about the future and negotiating
deteriorations and dying, and Burden of care impacting on QOL. Limitations: Low numbers of included studies, data collection and recruitment biases in
qualitative studies and small caregiver numbers in quantitative studies,
limit transferability of findings. Heterogeneity in study design and outcome
measures precluded meta-analysis. Conclusions: Caregivers of patients with conservatively managed kidney failure suffer
significant burden and experience QOL comparable with those caring for
patients on dialysis. Limited understanding and involvement in conservative
management decision making, and a fear of deterioration and dying, result in
anxiety in caregivers. Further research into the experiences of caregivers
will help support both caregivers and the patients who choose conservative
management. Registration: PROSPERO registration number CRD42021209811.
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Affiliation(s)
- Anisha Walavalkar
- Renal Unit, Department of Nephrology, Sunshine Coast University Hospital, Birtinya, Queensland, Australia
| | - Alison Craswell
- University of the Sunshine Coast, Sippy Downs, Queensland, Australia
- Sunshine Coast Health Institute, Birtinya, Queensland, Australia
| | - Nicholas A. Gray
- Renal Unit, Department of Nephrology, Sunshine Coast University Hospital, Birtinya, Queensland, Australia
- University of the Sunshine Coast, Sippy Downs, Queensland, Australia
- Sunshine Coast Health Institute, Birtinya, Queensland, Australia
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Bowers SP, Clare K, Hagerty L, McColl K, Smith E, Brown-Kerr A, Ahmed A, Finlay F, Dillon JF, Barclay S. Predicting 1-year mortality among patients with decompensated cirrhosis: results of a multicentre evaluation of the Bristol Prognostic Score. BMJ Open Gastroenterol 2022; 9:e000822. [PMID: 35318191 PMCID: PMC8943768 DOI: 10.1136/bmjgast-2021-000822] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/31/2021] [Accepted: 03/01/2022] [Indexed: 11/12/2022] Open
Abstract
OBJECTIVE Chronic liver disease continues to be a significant cause of morbidity and mortality yet remains challenging to prognosticate. This has been one of the barriers to implementing palliative care, particularly at an early stage. The Bristol Prognostic Score (BPS) was developed to identify patients with life expectancy less than 12 months and to act as a trigger for referral to palliative care services. This study retrospectively evaluated the BPS in a cohort of patients admitted to three Scottish hospitals. METHOD Routinely collated healthcare data were used to obtain demographics, BPS and analyse 1-year mortality for patients with decompensated liver disease admitted to three gastroenterology units over two 90-day periods. Statistical analysis was undertaken to assess performance of BPS in predicting mortality. RESULTS 276 patients were included in the final analysis. Participants tended to be late middle-aged men, socioeconomically deprived and have alcohol-related liver disease. A similar proportion was BPS+ve (>3) in this study compared with the original Bristol cohort though had more hospital admissions, higher ongoing alcohol use and poorer performance status. BPS performed poorer in this non-Bristol group with sensitivity 54.9% (72.2% in original study), specificity 58% (83.8%) and positive predictive value (PPV) 43.4% (81.3%). CONCLUSION BPS was unable to accurately predict mortality in this Scottish cohort. This highlights the ongoing challenge of prognostication in patients with chronic liver disease, furthering the call for more work in this field.
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Affiliation(s)
| | | | | | | | | | | | | | - Fiona Finlay
- Queen Elizabeth University Hospital, Glasgow, UK
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Arney J, Gray C, Clark JA, Smith D, Swank A, Matlock DD, Melcher J, Kanwal F, Naik AD. Prognosis conversations in advanced liver disease: A qualitative interview study with health professionals and patients. PLoS One 2022; 17:e0263874. [PMID: 35180233 PMCID: PMC8856527 DOI: 10.1371/journal.pone.0263874] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/20/2021] [Accepted: 01/31/2022] [Indexed: 12/16/2022] Open
Abstract
Advanced Liver Disease (AdvLD) is common, morbid, and associated with high likelihood of death. Patients may not fully understand their prognosis and are often unprepared for the course of illness. Little is known about how and when to deliver prognosis-related information to patients with AdvLD, who should participate, and what should be discussed. We conducted in-depth interviews with a multi-profession sample of Hepatology clinicians and patients with AdvLD. Participants were drawn from three geographically diverse facilities (New England, Texas, California). We used inductive and deductive qualitative data analysis approaches to identify themes related to AdvLD prognosis discussions. Thematic analysis focused on content, timing, and participants' roles in prognosis discussions. In total, 31 patients with AdvLD and 26 multi-profession clinicians completed interviews. Most participants provided a broad conceptualization of prognosis beyond predictions of survival, including expectations about illness course, ways to manage or avoid complications and a need to address patients' emotions. Patients favored initiating discussions early in the AdvLD course and welcomed a multi-profession approach to conducting discussions. Clinicians favored a larger role for specialty physicians. All participants recognized that AdvLD prognosis discussions occur infrequently and favored a structured, standardized approach to broadly discussing prognosis. Patients with AdvLD and their clinicians favored a multifaceted approach to prognosis conversations including discussions of life expectancy, predictions about likely course of liver disease, and expected changes in function and capabilities over time. Structured and early prognosis discussions should be part of routine AdvLD care.
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Affiliation(s)
- Jennifer Arney
- VA Health Services Research & Development Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, Houston, Texas, United States of America
- Department of Sociology, University of Houston-Clear Lake, Houston, Texas, United States of America
| | - Caroline Gray
- Center for Innovation to Implementation, VA Palo Alto Health Care System, Palo Alto, California, United States of America
| | - Jack A. Clark
- Department of Health Policy and Management, Boston University School of Public Health, Boston, Massachusetts, United States of America
| | - Donna Smith
- VA Health Services Research & Development Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, Houston, Texas, United States of America
- Department of Medicine, Section of Health Services Research, Baylor College of Medicine, Houston, Texas, United States of America
| | - Annie Swank
- Department of Sociology, University of Houston-Clear Lake, Houston, Texas, United States of America
| | - Daniel D. Matlock
- Division of Geriatric Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado, Colorado
| | - Jennifer Melcher
- VA Health Services Research & Development Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, Houston, Texas, United States of America
- Department of Medicine, Section of Health Services Research, Baylor College of Medicine, Houston, Texas, United States of America
| | - Fasiha Kanwal
- VA Health Services Research & Development Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, Houston, Texas, United States of America
- Department of Medicine, Section of Health Services Research, Baylor College of Medicine, Houston, Texas, United States of America
- Department of Medicine, Section of Gastroenterology and Hepatology, Baylor College of Medicine, Houston, Texas, United States of America
| | - Aanand D. Naik
- VA Health Services Research & Development Center for Innovations in Quality, Effectiveness, and Safety, Michael E. DeBakey VA Medical Center, Houston, Texas, United States of America
- Department of Medicine, Section of Health Services Research, Baylor College of Medicine, Houston, Texas, United States of America
- Department of Medicine, Section of Geriatrics and Palliative Medicine, Baylor College of Medicine, Houston, Texas, United States of America
- Department of Management, Policy, and Community Health, School of Public Health, University of Texas Health Science Center, Houston, Texas, Colorado
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Chen SC, Wu SF, Wang TJ, Rosenberg J, Lu YY, Liang SY. Factors influencing the coping strategies of liver cancer patients undergoing transarterial chemoembolization. Int J Nurs Pract 2021; 28:e13033. [PMID: 34913227 DOI: 10.1111/ijn.13033] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/17/2020] [Revised: 05/06/2021] [Accepted: 11/20/2021] [Indexed: 11/29/2022]
Abstract
AIM This study explored the association between social support, resilience and coping strategies among patients with liver cancer and evaluated the extent to which patients' use of various coping strategies can be explained by social support and resilience. METHODS This cross-sectional study comprised 119 patients who experienced transarterial chemoembolization related to liver cancer and who completed the Social Support Scale, the Resilience Scale and the Ways of Coping Checklist-Revised. RESULTS Results indicated a significant positive correlation between social support and use of problem-focused coping strategies and overall coping strategies. In addition, results showed a significant positive correlation between resilience and use of problem-focused strategies, emotion-focused strategies and overall coping strategies. Social support accounted for 14% of variance in use of problem-focused strategies and 7.6% of the variance in overall coping strategies. Resilience accounted for 30.5% of the variance in use of problem-focused strategies, 8.5% in use of emotion-focused strategies and 21.6% of overall coping strategies. CONCLUSION Results of this study highlight the importance of social support and resilience in patients' coping strategies related to liver cancer treatment.
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Affiliation(s)
- Su-Chih Chen
- Department of Nursing, Linkou Chang Gung Memorial Hospital, Taoyuan City, Taiwan
| | - Shu-Fang Wu
- School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan
| | - Tsae-Jyy Wang
- School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan
| | - John Rosenberg
- School of Nursing, University of the Sunshine Coast, Caboolture, Queensland, Australia
| | - Yu-Ying Lu
- School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan
| | - Shu-Yuan Liang
- School of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan
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Vijeratnam SS, Candy B, Craig R, Marshall A, Stone P, Low JTS. Palliative Care for Patients with End-Stage Liver Disease on the Liver Transplant Waiting List: An International Systematic Review. Dig Dis Sci 2021; 66:4072-4089. [PMID: 33433811 DOI: 10.1007/s10620-020-06779-1] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/07/2020] [Accepted: 12/09/2020] [Indexed: 01/21/2023]
Abstract
People with end-stage liver disease on the liver transplant waiting list have high symptom burden, which can successfully be addressed by specialist palliative care. Potential tensions with the perceived curative nature of liver transplant make delivering specialist palliative care challenging. This systematic review seeks to establish what is known on the impact of specialist palliative care for patients on liver transplant waiting lists, healthcare professionals' perspectives of providing specialist palliative care for this population, and uptake of advance care planning (ACP). Medline, Embase, and CINAHL were searched to May 5, 2020. Qualitative and quantitative findings were grouped together according to main relevant themes. Eight studies of mixed quality and mainly quantitative, were identified. Findings suggest early palliative care intervention improve patients' symptoms and prompt ACP conversations, but patients on the waiting list receive limited palliative care input. Liver physicians' lack of clarity on referral criteria and liver transplant patients' concerns of being abandoned, were reasons for reluctance to refer to specialist palliative care. They felt referral to specialist palliative care is appropriate only for patients receiving hospice or end of life care. Uptake and understanding of ACP and goals of care designation by patients is poor. This review found evidence of benefit of specialist palliative care for patients on liver transplant waiting lists, but found in a limited understanding of their role. Evidence is limited to studies from North America. Future research is needed to understand better how palliative care could be provided into this clinical environment.
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Affiliation(s)
- Shan Shan Vijeratnam
- Camden, Islington ELiPSe and UCLH and HCA Palliative Care Service, CNWL-Central and North West London NHS Foundation Trust, 2nd Floor Wing B, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK
| | - Bridget Candy
- Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK
| | - Rachel Craig
- Palliative Care Department, Royal Free London NHS Trust, Pond Street, London, NW3 2QG, UK
| | - Aileen Marshall
- Sheila Sherlock Liver Unit, Royal Free Hospital, University College London, London, UK
- Institute of Liver and Digestive Health, UCL Royal Free Campus, Pond Street, London, NW3 2QG, UK
| | - Patrick Stone
- Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK
| | - Joseph T S Low
- Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, 6th Floor, Maple House, 149 Tottenham Court Road, London, W1T 7NF, UK.
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Ampuero J, Aller R, Gallego-Durán R, Crespo J, Abad J, González-Rodríguez Á, Gómez-Camarero J, Caballería J, Lo Iacono O, Ibañez L, García-Samaniego J, Martín-Mateos R, Francés R, Fernández-Rodríguez C, Diago M, Soriano G, Andrade RJ, Latorre R, Jorquera F, Morillas RM, Escudero D, Estévez P, Hernández-Guerra M, Augustín S, Pareja-Megia MJ, Banales JM, Aspichueta P, Benlloch S, Rosales JM, Salmerón J, Turnes J, Romero-Gómez M. Definite and indeterminate nonalcoholic steatohepatitis share similar clinical features and prognosis: A longitudinal study of 1893 biopsy-proven nonalcoholic fatty liver disease subjects. Liver Int 2021; 41:2076-2086. [PMID: 33896100 DOI: 10.1111/liv.14898] [Citation(s) in RCA: 15] [Impact Index Per Article: 3.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/20/2021] [Revised: 04/01/2021] [Accepted: 04/06/2021] [Indexed: 12/13/2022]
Abstract
BACKGROUND AND AIM Histological score systems may not fully capture the essential nonalcoholic steatohepatitis (NASH) features, which is one of the leading causes of screening failure in clinical trials. We assessed the NASH distribution and its components across the fibrosis stages and their impact on the prognosis and their relationship with the concept of metabolic-associated fatty liver disease (MAFLD). METHODS Spanish multicenter study including 1893 biopsy-proven nonalcoholic fatty liver disease (NAFLD) patients from HEPAmet registry. NASH was diagnosed by NAS score ≥4 (including steatosis, ballooning and lobular inflammation) and fibrosis by Kleiner score. The presence of MAFLD was determined. Progression to cirrhosis, first episode of decompensated cirrhosis and death were collected during the follow-up (4.7 ± 3.8 years). RESULTS Fibrosis was F0 34.3% (649/1893), F1 27% (511/1893), F2 16.5% (312/1893), F3 15% (284/1893) and F4 7.2% (137/1893). NASH diagnosis 51.9% (982/1893), and its individual components (severe steatosis, ballooning and lobular inflammation), increased from F0 (33.6%) to F2 (68.6%), and decreased significantly in F4 patients (51.8%) (P = .0001). More than 70% of non-NASH patients showed some inflammatory activity (ballooning or lobular inflammation), showing a similar MAFLD rate than NASH (96.2% [945/982] vs. 95.2% [535/562]) and significantly higher than nonalcoholic fatty liver (NAFL) subjects (89.1% [311/349]) (P < .0001). Progression to cirrhosis was similar between NASH (9.5% [51/539]) and indeterminate NASH (7.9% [25/316]), and higher than steatosis (5% [14/263]) (logRank 8.417; P = .015). Death and decompensated cirrhosis were similar between these. CONCLUSIONS The prevalence of steatohepatitis decreased in advanced liver disease. However, most of these patients showed some inflammatory activity histologically and had metabolic disturbances. These findings should be considered in clinical trials whose main aim is to prevent cirrhosis progression and complications, liver transplant and death.
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Affiliation(s)
- Javier Ampuero
- Hospital Universitario Virgen del Rocío, Universidad de Sevilla, Seville, Spain
- SeLiver Group, Instituto de Biomedicina de Sevilla, Seville, Spain
- CIBERehd, Madrid, Spain
| | - Rocío Aller
- Centro de Investigación de Endocrinología y Nutrición, Hospital Clínico Universitario de Valladolid, Universidad de Valladolid, Valladolid, Spain
| | - Rocío Gallego-Durán
- SeLiver Group, Instituto de Biomedicina de Sevilla, Seville, Spain
- CIBERehd, Madrid, Spain
| | - Javier Crespo
- Digestive Department, Hospital Universitario Marqués de Valdecilla, Santander, Spain
| | - Javier Abad
- Digestive Department, Hospital Universitario Puerta de Hierro, Madrid, Spain
| | - Águeda González-Rodríguez
- Liver Research Unit, Hospital Universitario Santa Cristina Instituto de Investigación Sanitaria Princesa, Madrid, Spain
| | | | - Joan Caballería
- CIBERehd, Madrid, Spain
- Liver Unit, Hospital Clínic, Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBPAS), Barcelona, Spain
| | - Oreste Lo Iacono
- Digestive Department, Hospital Universitario Tajo, Aranjuez, Spain
| | - Luis Ibañez
- CIBERehd, Madrid, Spain
- Hospital General Universitario Gregorio Marañón, Instituto de Investigación Sanitaria Gregorio Marañón, Madrid, Spain
| | | | - Rosa Martín-Mateos
- CIBERehd, Madrid, Spain
- Digestive Department, Hospital Universitario Ramón y Cajal, Madrid, Spain
| | - Rubén Francés
- CIBERehd, Madrid, Spain
- Hospital General Universitario de Alicante, Universidad Miguel Hernández, Elche, Spain
| | | | - Moisés Diago
- Digestive Department, Hospital General Universitario de Valencia, Valencia, Spain
| | - Germán Soriano
- CIBERehd, Madrid, Spain
- Digestive Department, Hospital de la Santa Creu i San Pau, Barcelona, Spain
| | - Raúl J Andrade
- CIBERehd, Madrid, Spain
- Unidad de Gestión Clínica de Enfermedades Digestivas, Instituto de Investigación Biomédica de Málaga-IBIMA, Hospital Universitario Virgen de la Victoria, Universidad de Málaga, Málaga, Spain
| | - Raquel Latorre
- Digestive Department, Hospital Universitari Son Llátzer, Mallorca, Spain
| | - Francisco Jorquera
- CIBERehd, Madrid, Spain
- Servicio de Aparato Digestivo, Complejo Asistencial Universitario de León, IBIOMED, León, Spain
| | - Rosa M Morillas
- CIBERehd, Madrid, Spain
- Digestive Department, Hospital Germans Trias i Pujol, Badalona, Spain
| | - Desam Escudero
- Hospital Clínico Universitario de Valencia, Universitat de València, Valencia, Spain
| | - Pamela Estévez
- Digestive Department, Complejo Hospitalario Universitario de Vigo, Vigo, Spain
| | | | | | | | - Jesús M Banales
- CIBERehd, Madrid, Spain
- Department of Liver and Gastrointestinal Diseases, Biodonostia Research Institute-Donostia University Hospital, University of the Basque Country (UPV/EHU), Ikerbasque, San Sebastian, Spain
| | - Patricia Aspichueta
- CIBERehd, Madrid, Spain
- Department of Physiology, Faculty of Medicine and Nursing, Biocruces Research Institute, University of Basque Country UPV/EHU, Leioa, Spain
| | - Salvador Benlloch
- CIBERehd, Madrid, Spain
- Digestive Department, Hospital Universitari i Politecnic La Fe, Valencia, Spain
| | | | - Javier Salmerón
- Digestive Department, Hospital Universitario San Cecilio, Granada, Spain
| | - Juan Turnes
- Digestive Department, Complejo Hospitalario de Pontevedra, Pontevedra, Spain
| | - Manuel Romero-Gómez
- Hospital Universitario Virgen del Rocío, Universidad de Sevilla, Seville, Spain
- SeLiver Group, Instituto de Biomedicina de Sevilla, Seville, Spain
- CIBERehd, Madrid, Spain
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Ufere NN. Advance Care Planning and Goals of Care Discussions in Advanced Liver Disease. CURRENT HEPATOLOGY REPORTS 2021; 20:77-84. [PMID: 35083111 PMCID: PMC8788995 DOI: 10.1007/s11901-021-00565-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 07/07/2021] [Indexed: 06/14/2023]
Abstract
PURPOSE OF REVIEW Advance care planning (ACP) has been shown to improve multiple outcomes in patients with serious illnesses; however, patients with advanced liver disease, or cirrhosis, rarely receive timely ACP. The purpose of this review is to evaluate the current state of ACP for patients with advanced liver disease and to provide practical guidance for integrating early ACP into routine outpatient hepatology care. RECENT FINDINGS Due to multiple patient-, physician-, and systems-level barriers, patients with advanced liver disease have low rates of timely ACP engagement. Early identification and preparation of a surrogate decision-maker, enhancing clinician ACP communication skills, use of patient-centered educational tools, optimizing outpatient processes for ACP documentation, and early referral to specialty palliative care may help to improve current deficits in ACP for this population. SUMMARY Provision of early ACP to patients with advanced liver disease may better ensure that patients receive medical care that is consistent with their goals and values.
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Affiliation(s)
- Nneka N. Ufere
- Liver Center, Gastrointestinal Division, Department of Medicine, Massachusetts General Hospital, 55 Fruit Street, Boston, MA 02114, USA
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Ufere NN, Donlan J, Indriolo T, Richter J, Thompson R, Jackson V, Volandes A, Chung RT, Traeger L, El-Jawahri A. Burdensome Transitions of Care for Patients with End-Stage Liver Disease and Their Caregivers. Dig Dis Sci 2021; 66:2942-2955. [PMID: 32964286 DOI: 10.1007/s10620-020-06617-4] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/07/2020] [Accepted: 09/14/2020] [Indexed: 12/13/2022]
Abstract
BACKGROUND Patients with end-stage liver disease (ESLD) experience frequent readmissions; however, studies focused on patients' and caregivers' perceptions of their transitional care experiences to identify root causes of burdensome transitions of care are lacking. AIM To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs. METHODS We conducted interviews with 15 patients with ESLD and 14 informal caregivers. We used semi-structured interview guides to explore their experiences since the diagnosis of ESLD including their care transitions. Two raters coded interviews independently (κ = 0.95) using template analysis. RESULTS Participants reported feeling unprepared to manage their informational, psychosocial, and practical care needs as they transitioned from hospital to home after the diagnosis of ESLD. Delay in the timely receipt of supportive care services addressing these care needs resulted in hospital readmissions, emotional distress, caregiver burnout, reduced work capacity, and financial hardship. Participants shared the following resources that they perceived would improve their quality of care: (1) discharge checklist, (2) online resources, (3) mental health support, (4) caregiver support and training, and (5) financial navigation. CONCLUSION Transitional care models that attend to the informational, psychosocial, and practical domains of care are needed to better support patients with ESLD and their caregivers at the time of diagnosis and beyond. Without attending to the multidimensional care needs of newly diagnosed patients with ESLD and their caregivers, they are at risk of burdensome transitions of care, high healthcare utilization, and poor health-related quality of life.
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Affiliation(s)
- Nneka N Ufere
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA.
| | - John Donlan
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA
| | - Teresa Indriolo
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA
| | - James Richter
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA
| | - Ryan Thompson
- Department of Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
| | - Vicki Jackson
- Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
| | - Angelo Volandes
- Section of General Internal Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
| | - Raymond T Chung
- Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA
| | - Lara Traeger
- Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
| | - Areej El-Jawahri
- Division of Hematology and Oncology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA
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Patel AA, Woodrell C, Ufere NN, Hansen L, Tandon P, Verma M, Lai J, Pinotti R, Rakoski M, the Palliative Care Education, Advocacy, and Research in Liver Disease (PEARL) Workgroup and the AASLD Public Health / Healthcare Delivery Special Interest Group (SIG). Developing Priorities for Palliative Care Research in Advanced Liver Disease: A Multidisciplinary Approach. Hepatol Commun 2021; 5:1469-1480. [PMID: 34510839 PMCID: PMC8435283 DOI: 10.1002/hep4.1743] [Citation(s) in RCA: 14] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/04/2021] [Revised: 03/28/2021] [Accepted: 04/19/2021] [Indexed: 02/04/2023] Open
Abstract
Individuals with advanced liver disease (AdvLD), such as decompensated cirrhosis (DC) and hepatocellular carcinoma (HCC), have significant palliative needs. However, little research is available to guide health care providers on how to improve key domains related to palliative care (PC). We sought to identify priority areas for future research in PC by performing a comprehensive literature review and conducting iterative expert panel discussions. We conducted a literature review using search terms related to AdvLD and key PC domains. Individual reviews of these domains were performed, followed by iterative discussions by a panel consisting of experts from multiple disciplines, including hepatology, specialty PC, and nursing. Based on these discussions, priority areas for research were identified. We identified critical gaps in the available research related to PC and AdvLD. We developed and shared five key priority questions incorporating domains related to PC. Conclusion: Future research endeavors focused on improving PC in AdvLD should consider addressing the five key priorities areas identified from literature reviews and expert panel discussions.
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Affiliation(s)
- Arpan A. Patel
- Vatche and Tamar Manoukian Division of Digestive DiseasesDepartment of MedicineDavid Geffen School of Medicine at University of California Los AngelesLos AngelesCAUSA
- Veterans Affairs Greater Los Angeles Healthcare SystemLos AngelesCAUSA
| | - Christopher Woodrell
- Brookdale Department of Geriatrics and Palliative MedicineIcahn School of Medicine at Mount SinaiNew YorkNYUSA
- James J. Peters Veterans Affairs Medical CenterBronxNYUSA
| | - Nneka N. Ufere
- Gastrointestinal UnitDepartment of MedicineMassachusetts General HospitalHarvard Medical SchoolBostonMAUSA
| | - Lissi Hansen
- School of NursingOregon Health Sciences UniversityPortlandORUSA
| | - Puneeta Tandon
- Department of MedicineCirrhosis Care ClinicEdmontonALCanada
- Liver Transplant UnitUniversity of AlbertaEdmontonALCanada
| | - Manisha Verma
- Department of Digestive Diseases and TransplantationEinstein Healthcare NetworkPhiladelphiaPAUSA
| | - Jennifer Lai
- Division of Gastroenterology and HepatologyDepartment of MedicineUniversity of California San FranciscoSan FranciscoCAUSA
| | - Rachel Pinotti
- Gustave L. and Janet W. Levy LibraryIcahn School of Medicine at Mount SinaiNew YorkNYUSA
| | - Mina Rakoski
- Division of Gastroenterology and HepatologyLoma Linda University HealthLoma LindaCAUSA
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Cooper M, Pollard A, Pandey A, Bremner S, Macken L, Evans CJ, Austin M, Parnell N, Steer S, Thomson S, Hashim A, Mason L, Verma S. Palliative Long-Term Abdominal Drains Versus Large Volume Paracentesis in Refractory Ascites Due to Cirrhosis (REDUCe Study): Qualitative Outcomes. J Pain Symptom Manage 2021; 62:312-325.e2. [PMID: 33348031 DOI: 10.1016/j.jpainsymman.2020.12.007] [Citation(s) in RCA: 17] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/24/2020] [Revised: 12/06/2020] [Accepted: 12/08/2020] [Indexed: 12/14/2022]
Abstract
CONTEXT Palliative care remains suboptimal in end-stage liver disease (ESLD). OBJECTIVES We report qualitative outcomes from the REDUCe study. We aimed to explore and contrast experiences/perceptions/care pathways of patients with refractory ascites due to ESLD randomized to either palliative long-term abdominal drains (LTADs) (allow home drainage) vs. large volume paracentesis (LVP) (hospital drainage). METHODS Concurrent embedded qualitative study in a 12-week feasibility randomized controlled trial. Telephone interviews were conducted, data being recorded, transcribed verbatim, and analyzed using applied thematic analysis, considered in terms of a pathway approach toward accessing health care. Quantitative outcomes were collected (integrated palliative outcome scale, short-form liver disease quality of life, EQ-5D-5 L, Zarit Burden Interview-12). RESULTS Fourteen patients (six allocated LTAD and eight LVP) and eight nurses participated in the qualitative study. The patient journey in the LVP group could be hindered by challenges along the entire care pathway, from recognizing the need for drainage to a lengthy wait in hospital for drainage and/or to be discharged. These issues also impacted upon caregivers. In contrast, LTADs appeared to transform this care pathway at all levels across the patient's journey by removing the need for hospital drainage. Additional benefits included personalized care, improved symptom control of ascites, being at home, and regular support from community nurses. Nurses also viewed the LTAD favorably, though expressed the need for additional support should this become standard of care. CONCLUSION Patients and nurses expressed acceptability of palliative LTAD in ESLD and preference for this approach in enabling care at home. Proceeding to a definitive trial is feasible. TRIAL REGISTRATION ISRCTN30697116, date assigned: 07/10/2015.
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Affiliation(s)
- Max Cooper
- Department of Primary Care and Public Health, Brighton and Sussex Medical School, Brighton, UK
| | - Alex Pollard
- Department of Primary Care and Public Health, Brighton and Sussex Medical School, Brighton, UK
| | - Aparajita Pandey
- Research & Development Department, Sussex Partnership NHS Foundation Trust, Brighton, UK
| | | | - Lucia Macken
- Department of Clinical and Experimental Medicine, Brighton and Sussex Medical School, Brighton, UK; Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK
| | - Catherine J Evans
- Kings College, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK; Sussex Community NHS Foundation Trust, Brighton, UK
| | - Mark Austin
- Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK
| | - Nick Parnell
- Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK
| | - Shani Steer
- Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK
| | - Sam Thomson
- Department of Gastroenterology and Hepatology, Western Sussex NHS Foundation Trust, Worthing, UK
| | - Ahmed Hashim
- Department of Clinical and Experimental Medicine, Brighton and Sussex Medical School, Brighton, UK; Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK
| | - Louise Mason
- Department of Palliative Medicine, Brighton and Sussex University Hospitals Trust, Brighton, UK
| | - Sumita Verma
- Department of Clinical and Experimental Medicine, Brighton and Sussex Medical School, Brighton, UK; Department of Gastroenterology and Hepatology, Brighton and Sussex University Hospitals Trust, Brighton, UK.
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Poyner C, Tripathi D, Mathers J. Exploring patients' perceptions and experiences of treatments for the prevention of variceal bleeding: a qualitative study. BMJ Open Gastroenterol 2021; 8:e000684. [PMID: 34400438 PMCID: PMC8370546 DOI: 10.1136/bmjgast-2021-000684] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/19/2021] [Accepted: 07/22/2021] [Indexed: 01/29/2023] Open
Abstract
BACKGROUND The most common fatal complication of liver cirrhosis is haemorrhaging caused by variceal rupture. The prevention of the first variceal bleed is, therefore, an important clinical goal. Little is known about patients' experience of treatments geared towards this, or of their perceptions of treatments prior to being exposed to them. AIMS To explore the factors impacting patient preference for, and actual experience of carvedilol and variceal band ligation. METHODS Semistructured interviews were conducted with 30 patients from across the UK at baseline, prior to random allocation to either carvedilol or variceal band ligation. Twenty patients were interviewed a second time at 6-month follow-up. Five patients who declined the trial were also interviewed. Data were analysed using thematic analysis. RESULTS There was no clear preference for either treatment pathway at baseline. Key factors reported by patients to influence their treatment preference included: negative experiences with key treatment processes; how long-term or short-term treatment was perceived to be; treatment misconceptions; concerns around polypharmacy and worries around treatment adherence. Patient treatment experience was influenced by their perceptions of treatment effectiveness; clinical surveillance; clinician interaction and communication, or lack thereof. Carvedilol-specific experience was also influenced by the manifestation of side effects and patient dosage routine. Variceal band ligation-specific experience was positively influenced by the use of sedation, and negatively influenced by the procedure recovery period. CONCLUSIONS These data do not support a view that the patient experience of beta-blockade for prevention of variceal bleeds is likely to be superior to variceal band ligation.
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Affiliation(s)
- Chris Poyner
- Institute of Applied Health Research, University of Birmingham, Birmingham, Birmingham, UK
| | - Dhiraj Tripathi
- University of Birmingham, Birmingham, UK
- Liver Unit, Queen Elizabeth Hospital, Birmingham, Birmingham, UK
| | - Jonathan Mathers
- Institute of Applied Health Research, University of Birmingham, Birmingham, Birmingham, UK
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Das D, Ali M, Hussain IA, Ingram JTN, Johnstone RS, Lopes JJ, Wadee T, Chakraborty N. What do we know about patients' perspectives and expectations relating to palliative and end-of-life care in advanced liver disease? A systematic review of qualitative literature using ENTREQ guidelines. BMJ Support Palliat Care 2021:bmjspcare-2021-003057. [PMID: 34233896 DOI: 10.1136/bmjspcare-2021-003057] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/17/2021] [Accepted: 06/20/2021] [Indexed: 12/20/2022]
Abstract
BACKGROUND Liver disease, a major cause of death worldwide, affects younger people compared with other major causes of death. Palliative and end-of-life care for these patients are often overlooked. Guidelines are emerging on what good end-of-life care in liver disease should look like, but there is a dearth of research into patients' perspectives even though they are most affected by these guidelines. AIM To explore current knowledge and understanding of patients' lived experiences, perspectives and expectations in relation to palliative and end-of-life care in advanced liver disease. DESIGN Systematic review with thematic synthesis complying to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement. SETTING AND PARTICIPANTS Database searches (Ovid Medline, 1946-2021 and Web of Science, 1970-2021) to identify qualitative studies exploring patients' perspectives of palliative and end-of-life care in advanced liver disease. FINDINGS Only eight articles met all criteria. Themes demonstrated repeated hospital admissions towards the end of life, lack of coordinated care in community and barriers in discussion about palliative care in end-stage liver disease due to lack of confidence among professionals and a negative view about palliative care among patients and carers. Emotional, financial and disability-related needs of patients and their carers are often neglected. CONCLUSION There is a dearth of studies exploring patients' perspectives about care in advanced liver disease relating to palliative and end-of-life care. Lack of coordinated community support and honest conversations around palliative care leads to reduced quality of life. More primary research from diverse population is needed to improve palliative care and end-of-life care in end-stage liver disease.
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Affiliation(s)
- Debasish Das
- Department of Digestive Diseases, Kettering General Hospital, Kettering, UK
- Medical School, University of Leicester, Leicester, UK
| | - Mafas Ali
- Medical School, University of Leicester, Leicester, UK
| | | | | | | | | | - Tasneem Wadee
- Medical School, University of Leicester, Leicester, UK
| | - Nandini Chakraborty
- PIER Team, Leicestershire Partnership NHS Trust, Leicester, UK
- Department of Health Sciences, University of Leicester, Leicester, UK
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Orman ES, Johnson AW, Ghabril M, Sachs GA. Hospice care for end stage liver disease in the United States. Expert Rev Gastroenterol Hepatol 2021; 15:797-809. [PMID: 33599185 PMCID: PMC8282639 DOI: 10.1080/17474124.2021.1892487] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/22/2022]
Abstract
INTRODUCTION Patients with end-stage liver disease (ESLD) have impaired physical, psychological, and social functions, which can diminish patient quality of life, burden family caregivers, and increase health-care utilization. For those with a life expectancy of less than six months, these impairments and their downstream effects can be addressed effectively through high-quality hospice care, delivered by multidisciplinary teams and focused on the physical, emotional, social, and spiritual wellbeing of patients and caregivers, with a goal of improving quality of life. AREAS COVERED In this review, we examine the evidence supporting hospice for ESLD, we compare this evidence to that supporting hospice more broadly, and we identify potential criteria that may be useful in determining hospice appropriateness. EXPERT OPINION Despite the potential for hospice to improve care for those at the end of life, it is underutilized for patients with ESLD. Increasing the appropriate utilization of hospice for ESLD requires a better understanding of patient eligibility, which can be based on predictors of high short-term mortality and liver transplant ineligibility. Such hospice criteria should be data-driven and should accommodate the uncertainty faced by patients and physicians.
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Affiliation(s)
- Eric S. Orman
- Division of Gastroenterology & Hepatology, Indiana University School of Medicine,Corresponding author: Eric S. Orman, Address: Division of Gastroenterology & Hepatology, Indiana University School of Medicine, 702 Rotary Circle, Suite 225, Indianapolis, IN 46202,
| | - Amy W. Johnson
- Division of General Internal Medicine & Geriatrics, Indiana University School of Medicine
| | - Marwan Ghabril
- Division of Gastroenterology & Hepatology, Indiana University School of Medicine
| | - Greg A. Sachs
- Division of General Internal Medicine & Geriatrics, Indiana University School of Medicine,Indiana University Center for Aging Research, Regenstrief Institute, Inc
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Eliciting and Understanding Primary Care and Specialist Mental Models of Cirrhosis Care: A Cognitive Task Analysis Study. Can J Gastroenterol Hepatol 2021; 2021:5582297. [PMID: 34222136 PMCID: PMC8219466 DOI: 10.1155/2021/5582297] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/12/2021] [Revised: 05/03/2021] [Accepted: 05/18/2021] [Indexed: 12/31/2022] Open
Abstract
BACKGROUND Gaps in coordination and transitions of care for liver cirrhosis contribute to high rates of hospital readmissions and inadequate quality of care. Understanding the differences in the mental models held by specialty and primary care physicians may help to identify the root causes of problems in the coordination of cirrhosis care. AIM To compare and identify differences in the mental models of cirrhosis care held by primary and specialty care physicians and nurse practitioners that may be addressed to improve coordination and transitions. METHODS Cross-sectional formal elicitation of mental models using Cognitive Task Analysis. Purposive and chain-referral sampling to select family physicians (n = 8), specialists (n = 9), and cirrhosis-dedicated nurse practitioners (n = 2) across Alberta. RESULTS Family physicians do not maintain rich mental models of cirrhosis care. They see cirrhosis patients relatively infrequently, rebuilding their mental models when required (knowledge on demand). They have reactive and patient-need-focused, rather than proactive and system-of-care, mental models. Specialists' mental models are rich but vary widely between patient-centered and task-centered and in the degree to which they incorporate responsibility for addressing system gaps. Nurse practitioners hold patient-centered mental models like specialists but take responsibility for addressing gaps in the system. CONCLUSIONS Improving the coordination of cirrhosis care will require infrastructure to design care pathways and work processes that will support family physicians' knowledge-on-demand needs, facilitate primary care-specialist relationships, and deliberately work toward building a shared mental model of responsibilities for addressing medical care and social determinants of health.
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