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Olsen BC, Opheim R, Kristensen VA, Høivik ML, Lund C, Aabrekk TB, Johansen I, Holten K, Strande V, Bengtson MB, Ricanek P, Detlie TE, Bernklev T, Jelsness-Jørgensen LP, Huppertz-Hauss G. Health-related quality of life in patients with newly diagnosed inflammatory bowel disease: an observational prospective cohort study (IBSEN III). Qual Life Res 2023; 32:2951-2964. [PMID: 37219727 PMCID: PMC10473983 DOI: 10.1007/s11136-023-03435-9] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 05/04/2023] [Indexed: 05/24/2023]
Abstract
PURPOSE This unselected, population-based cohort study aimed to determine the level of health-related quality of life (HRQoL) in patients with Crohn's disease (CD) and ulcerative colitis (UC) at the time of diagnosis compared with a reference population and identify the demographic factors, psychosocial measures, and disease activity markers associated with HRQoL. METHODS Adult patients newly diagnosed with CD or UC were prospectively enrolled. HRQoL was measured using the Short Form 36 (SF-36) and Norwegian Inflammatory Bowel Disease Questionnaires. Clinical significance was assessed using Cohen's d effect size and further compared with a Norwegian reference population. Associations between HRQoL and symptom scores, demographic factors, psychosocial measures, and disease activity markers were analyzed. RESULTS Compared with the Norwegian reference population, patients with CD and UC reported significantly lower scores in all SF-36 dimensions, except for physical functioning. Cohen's d effect sizes for men and women in all SF-36 dimensions were at least moderate, except for bodily pain and emotional role for men with UC and physical functioning for both sexes and diagnoses. In the multivariate regression analysis, depression subscale scores ≥ 8 on the Hospital Anxiety and Depression Scale, substantial fatigue, and high symptom scores were associated with reduced HRQoL. CONCLUSION Patients newly diagnosed with CD and UC reported statistically and clinically significantly lower scores in seven of the eight SF-36 dimensions than the reference population. Symptoms of depression, fatigue, and elevated symptom scores were associated with poorer HRQoL.
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Affiliation(s)
- Bjorn Christian Olsen
- Department of Gastroenterology, Skien Hospital, Telemark Hospital Trust, Ulefossvegen 55, 3710, Skien, Norway.
- Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
| | - Randi Opheim
- Department of Gastroenterology, Oslo University Hospital, Oslo, Norway
- Department of Nursing Science, Institute of Health and Society, University of Oslo, Oslo, Norway
| | - Vendel A Kristensen
- Department of Gastroenterology, Oslo University Hospital, Oslo, Norway
- Unger-Vetlesen Institute, Lovisenberg Diaconal Hospital, Oslo, Norway
| | - Marte Lie Høivik
- Institute of Clinical Medicine, University of Oslo, Oslo, Norway
- Department of Gastroenterology, Oslo University Hospital, Oslo, Norway
| | - Charlotte Lund
- Institute of Clinical Medicine, University of Oslo, Oslo, Norway
- Department of Gastroenterology, Oslo University Hospital, Oslo, Norway
| | - Tone Bergene Aabrekk
- Institute of Clinical Medicine, University of Oslo, Oslo, Norway
- Vestfold Hospital Trust, Research and Development, Tønsberg, Norway
| | - Ingunn Johansen
- Institute of Clinical Medicine, University of Oslo, Oslo, Norway
- Faculty of Health, Welfare and Organisation, Østfold University College, Halden, Norway
| | - Kristina Holten
- Institute of Clinical Medicine, University of Oslo, Oslo, Norway
- Department of Gastroenterology, Østfold Hospital Trust, Sarpsborg, Norway
| | - Vibeke Strande
- Institute of Clinical Medicine, University of Oslo, Oslo, Norway
- Unger-Vetlesen Institute, Lovisenberg Diaconal Hospital, Oslo, Norway
| | | | - Petr Ricanek
- Department of Gastroenterology, Akershus University Hospital, Lørenskog, Norway
| | - Trond Espen Detlie
- Department of Gastroenterology, Akershus University Hospital, Lørenskog, Norway
| | - Tomm Bernklev
- Institute of Clinical Medicine, University of Oslo, Oslo, Norway
- Vestfold Hospital Trust, Research and Development, Tønsberg, Norway
| | - Lars-Petter Jelsness-Jørgensen
- Faculty of Health, Welfare and Organisation, Østfold University College, Halden, Norway
- Department of Gastroenterology, Østfold Hospital Trust, Sarpsborg, Norway
| | - Gert Huppertz-Hauss
- Department of Gastroenterology, Skien Hospital, Telemark Hospital Trust, Ulefossvegen 55, 3710, Skien, Norway
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Mavroudis G, Simrén M, Öhman L, Strid H. Health-related quality of life in patients with long-standing ulcerative colitis in remission. Therap Adv Gastroenterol 2022; 15:17562848211062406. [PMID: 35173800 PMCID: PMC8842447 DOI: 10.1177/17562848211062406] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/12/2021] [Accepted: 11/02/2021] [Indexed: 02/04/2023] Open
Abstract
INTRODUCTION Ulcerative colitis (UC) contributes to impaired health-related quality of life (HRQoL). Although disease activity is the most important factor, reduced HRQoL has been reported even in quiescent UC. We aimed to determine HRQoL, and identify predictors thereof, in patients with long-standing UC in remission. METHODS In total, 66 patients with inactive UC were included 10 years after the disease onset. Clinical assessment including rigid sigmoidoscopy was performed to ensure remission. Data on demographic, clinical, treatment-related, and psychological determinants of HRQoL were obtained with a structured interview and self-assessment questionnaires measuring gastrointestinal (GI) and psychological symptoms and fatigue. HRQoL was measured with the Short Form Health Survey (SF-36). RESULTS The SF-36 domains were comparable to the general Swedish population, except for Vitality, where UC patients scored lower. Gender, smoking, comorbidity, or disease phenotype had no impact on HRQoL. In contrast, corticosteroid use and sick leave during the previous year were independently associated with Physical Functioning and Bodily Pain domains of SF-36; persisting GI symptoms during remission with Bodily Pain; and fatigue with Role Physical, General Health and Vitality. For all other SF-36 domains reflecting mental HRQoL (Social Function, Role Emotional, Mental Health), only psychological distress contributed uniquely. CONCLUSIONS Although overall HRQoL in long-standing UC in remission is comparable to the general population, previous disease activity as well as persisting GI symptoms, fatigue, and psychological distress are associated with a lower HRQoL among these patients. Improved HRQoL may allow for better UC patient health and reduced costs for health care.
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Affiliation(s)
| | - Magnus Simrén
- Department of Molecular and Clinical Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden,Department of Internal Medicine, Sahlgrenska University Hospital, Gothenburg, Sweden
| | - Lena Öhman
- Department of Microbiology and Immunology, Institute of Biomedicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
| | - Hans Strid
- Department of Molecular and Clinical Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Department of Internal Medicine, Södra Älvsborg Hospital, Borås, Sweden
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3
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Lahat A, Veisman I. Capsule Endoscopy in Crohn's Disease-From a Relative Contraindication to Habitual Monitoring Tool. Diagnostics (Basel) 2021; 11:diagnostics11101737. [PMID: 34679435 PMCID: PMC8534609 DOI: 10.3390/diagnostics11101737] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/18/2021] [Revised: 09/03/2021] [Accepted: 09/16/2021] [Indexed: 12/15/2022] Open
Abstract
Crohn’s disease (CD) is a chronic inflammatory disorder that may involve the gastrointestinal tract from the mouth to the anus. Habitual disease monitoring is highly important during disease management, aiming to identify and treat disease exacerbations, in order to avoid immediate and future complications. Currently, ilio-clonoscopy is the gold standard for mucosal assessment. However, the procedure is invasive, involves sedation and allows for visualization of the colon and only a small part of the terminal ileum, while most of the small bowel is not visualized. Since CD may involve the whole length of the small bowel, the disease extent might be underestimated. Capsule endoscopy (CE) provides a technology that can screen the entire bowel in a non-invasive procedure, with minimal side effects. In recent years, this technique has gained in popularity for CD evaluation and monitoring. When CE was first introduced, two decades ago, the fear of possible capsule retention in the narrowed inflamed bowel lumen limited its use in CD patients, and a known CD located at the small bowel was even regarded as a relative contraindication for capsule examination. However, at present, as experience using CE in CD patients has accumulated, this procedure has become one of the accepted tools for disease diagnosis and monitoring. In our current review, we summarize the historic change in the indications and contraindications for the usage of capsule endoscopy for the evaluation of CD, and discuss international recommendations regarding CE’s role in CD diagnosis and monitoring.
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Affiliation(s)
- Adi Lahat
- Chaim Sheba Medical Center, Department of Gastroenterology, Sackler Medical School, Tel Aviv University, Tel Hashomer 52620, Israel;
- Sackler Medical School, Tel Aviv University, Tel Aviv 67011, Israel
- Correspondence:
| | - Ido Veisman
- Chaim Sheba Medical Center, Department of Gastroenterology, Sackler Medical School, Tel Aviv University, Tel Hashomer 52620, Israel;
- Sackler Medical School, Tel Aviv University, Tel Aviv 67011, Israel
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4
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Tripathi K, Dong J, Mishkin BF, Feuerstein JD. Patient Preference and Adherence to Aminosalicylates for the Treatment of Ulcerative Colitis. Clin Exp Gastroenterol 2021; 14:343-351. [PMID: 34511961 PMCID: PMC8412827 DOI: 10.2147/ceg.s237653] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/13/2021] [Accepted: 08/14/2021] [Indexed: 12/11/2022] Open
Abstract
Ulcerative colitis (UC) is a chronic inflammatory disorder that requires sustained treatment for optimal outcomes. The 5-aminosalicylate (5-ASA) class of medications are first-line for the treatment of mild-to-moderate UC but suffer from suboptimal adherence rates in real-world settings. This review summarizes the literature on adherence and patient preference to 5-ASA in patients with UC. We begin by highlighting key studies that measure real-world adherence rates, as well as some of the pitfalls associated with certain techniques. We examine the data on the consequences of non-adherence, which range from decreased quality of life and higher risk of colorectal cancer at the individual level to increased costs to the overall healthcare system. We then turn to the reasons and risk factors for non-adherence and summarize the current understanding of the barriers towards adherence. Afterwards, we describe the research on patient preferences between 5-ASA formulations and dosing regimen. Finally, we summarize the evidence regarding interventions to improve 5-ASA adherence. While adherence remains a challenge in practice, understanding the current state of the field can better inform future efforts towards increasing adherence, and thus clinical outcomes, in UC.
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Affiliation(s)
- Kartikeya Tripathi
- Department of Gastroenterology, University of Massachusetts Medical School - Baystate Campus, Springfield, MA, USA
| | - Jeffrey Dong
- Division of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA
| | - Brooke F Mishkin
- Division of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA
| | - Joseph D Feuerstein
- Division of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA
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5
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Yarlas A, Willian MK, Nag A. The impact of clinical symptoms and endoscopic and histologic disease activity on health-related quality of life in patients with ulcerative colitis following treatment with multimatrix mesalazine. Qual Life Res 2021; 30:1925-1938. [PMID: 33651279 PMCID: PMC8233235 DOI: 10.1007/s11136-021-02787-4] [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] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 02/02/2021] [Indexed: 10/28/2022]
Abstract
PURPOSE Studies of patients with ulcerative colitis (UC) report that reduced clinical symptoms and endoscopic activity predict better health-related quality of life (HRQoL). However, no study has examined the joint and unique associations of clinical and endoscopic activity with HRQoL, nor of histologic inflammation and HRQoL. These post hoc analyses evaluated whether reduced clinical, endoscopic, and histologic disease activity were uniquely associated with improved HRQoL for adults with active mild-to-moderate UC receiving once-daily 4.8 g/day multimatrix mesalazine for 8 weeks. METHODS Assessments at baseline and week 8 (i.e., treatment completion) included clinical and endoscopic activity (modified UC-Disease Activity Index), histology (Geboes scoring), and HRQoL (Short Inflammatory Bowel Disease Questionnaire [SIBDQ]; SF-12v2® Health Survey [SF-12v2]). Associations among each type of disease activity and HRQoL were examined by correlations and by mean changes in SIBDQ and SF-12v2 scores between disease activity subgroups (e.g., achievement of clinical remission; mucosal healing). Regression models estimated unique variance in HRQoL accounted by each type of disease activity. RESULTS Within the analysis sample (n = 717), patients with reduced clinical and endoscopic activity had significantly larger improvements in all HRQoL domains (p < 0.001), as did patients in both endoscopic and clinical remission compared to patients in endoscopic remission only (p < 0.05). Patients with histologic activity post-treatment scored significantly worse on all HRQoL domains than patients with no activity (p < 0.05). Correlations and regression models found that decreases in clinical and endoscopic activity were associated with improvements in HRQoL domain scores. CONCLUSIONS Clinical symptoms and mucosal health have separable, distinct impacts on UC patients' HRQoL.
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Affiliation(s)
- Aaron Yarlas
- QualityMetric, 1301 Atwood Avenue, Suite 216E, Johnston, RI, 02919, USA.
| | | | - Arpita Nag
- Shire, 300 Shire Way, Lexington, MA, 02421, USA
- Sanofi, 270 Albany St, Cambridge, MA, 02139, USA
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6
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Ludvigsson JF, Olén O, Larsson H, Halfvarson J, Almqvist C, Lichtenstein P, Butwicka A. Association Between Inflammatory Bowel Disease and Psychiatric Morbidity and Suicide: A Swedish Nationwide Population-Based Cohort Study With Sibling Comparisons. J Crohns Colitis 2021; 15:1824-1836. [PMID: 33640971 PMCID: PMC8675324 DOI: 10.1093/ecco-jcc/jjab039] [Citation(s) in RCA: 41] [Impact Index Per Article: 10.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/11/2022]
Abstract
BACKGROUND AND AIMS Inflammatory bowel disease [IBD] is linked to psychiatric morbidity, but few studies have assessed general population comparators. We aimed to investigate the risk of psychiatric morbidity and suicide in adult-onset IBD patients. METHODS We used a nationwide population-based cohort study in Sweden [1973-2013]. We studied the risk of psychiatric disorders and suicide in 69,865 adult-onset IBD patients [ulcerative colitis, UC: n = 43,557; Crohn's disease, CD: n = 21,245; and IBD-unclassified: n = 5063] compared to 3,472,913 general population references and 66 292 siblings. RESULTS During a median follow-up of 11 years, we found 7465 [10.7%] first psychiatric disorders in IBD [incidence rate, IR/1000 person-years 8.4] and 306 911 [9.9%] in the general population [IR 6.6], resulting in 1.8 extra psychiatric morbidity per 100 patients followed-up for 10 years and a hazard ratio [HR] of 1.3 [95% confidence interval, 95%CI = 1.2-1.3]. The highest risk of overall psychiatric morbidity was seen in the first year after IBD diagnosis [HR = 1.4, 95%CI = 1.2-1.6] and in patients with extraintestinal manifestations [HR = 1.6, 95%CI = 1.5-1.7]. Psychiatric morbidity was more common in all IBD subtypes [HR 1.3-1.5]. An increased risk of suicide attempts was observed among all IBD types [HR = 1.2-1.4], whereas completed suicide was explicitly associated with CD [HR = 1.5] and elderly-onset [diagnosed at the age of > 60 years] IBD [HR = 1.7]. CONCLUSION Adult-onset IBD was associated with an increased risk of psychiatric disorders and suicide attempts. Psychological follow-up should be provided to patients with IBD, especially those with extraintestinal manifestations and elderly-onset IBD. This follow-up should be within the first year after IBD diagnosis.
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Affiliation(s)
- Jonas F Ludvigsson
- Department of Medical Epidemiology and Biostatistics,
Karolinska Institutet, Solna, Sweden,Department of Pediatrics, Orebro University
Hospital, Orebro, Sweden,Division of Epidemiology and Public Health, School of
Medicine, University of Nottingham, UK,Department of Medicine, Columbia University College of
Physicians and Surgeons, New York, NY,
USA
| | - Ola Olén
- Sachs’ Children and Youth Hospital, Stockholm South
General Hospital, Stockholm, Sweden,Department of Clinical Science and Education
Södersjukhuset, Karolinska Institutet,
Stockholm, Sweden,Clinical Epidemiology Division, Department of Medicine
Solna, Karolinska Institutet, Stockholm,
Sweden
| | - Henrik Larsson
- Department of Medical Epidemiology and Biostatistics,
Karolinska Institutet, Solna, Sweden,School of Medical Sciences, Örebro
University, Sweden
| | - Jonas Halfvarson
- Department of Gastroenterology, Faculty of Medicine and
Health, Örebro University,
Örebro, Sweden
| | - Catarina Almqvist
- Department of Medical Epidemiology and Biostatistics,
Karolinska Institutet, Solna, Sweden,Pediatric Allergy and Pulmonology Unit, Astrid Lindgren
Children’s Hospital, Karolinska University Hospital,
Stockholm, Sweden
| | - Paul Lichtenstein
- Department of Medical Epidemiology and Biostatistics,
Karolinska Institutet, Solna, Sweden
| | - Agnieszka Butwicka
- Department of Medical Epidemiology and Biostatistics,
Karolinska Institutet, Solna, Sweden,Child and Adolescent Psychiatry Stockholm, Stockholm
Health Care Services, Region Stockholm,
Sweden,Department of Child Psychiatry, Medical University of
Warsaw, Warsaw, Poland,Corresponding author: A. Butwicka, Department of Medical
Epidemiology and Biostatistics, Karolinska Institutet, 171 77 Stockholm, Sweden.
Tel: +46 (0) 8-5248 2428; Fax: +46 (0) 8-31 49
75;
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7
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Health-Related Quality of Life Among Patients With Inflammatory Bowel Disease: A Case Control Study. Gastroenterol Nurs 2020; 44:21-30. [PMID: 33351519 DOI: 10.1097/sga.0000000000000491] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/05/2019] [Accepted: 09/01/2019] [Indexed: 01/04/2023] Open
Abstract
The aim of this study is to compare health-related quality of life between inflammatory bowel disease patients and age-/gender-matched controls while taking into account comorbid conditions (such as diabetes and heart disease). Data from the 2015 and 2016 National Health Interview Survey were used. Patients with inflammatory bowel disease (n = 951) were age- and gender-matched to noninflammatory bowel disease patients (n = 3,804). Patients with inflammatory bowel disease were more likely to be diagnosed with an airway disease (p < .000), heart disease (p < .000), or stomach cancer (p < .001) than age- and gender-matched individuals without inflammatory bowel disease. Even after controlling for these comorbidities, sociodemographic characteristics as well as health-related behaviors, patients with inflammatory bowel disease had significantly lower health-related quality of life than individuals of the same age and gender. Inflammatory bowel disease appears to be associated with particularly low levels of health-related quality of life. Alcohol consumption, smoking, physical activity, and body mass index may be risk factors for a decreased health-related quality of life.
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8
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Everhov ÅH, Bruze G, Söderling J, Askling J, Halfvarson J, Westberg K, Malmborg P, Nordenvall C, Ludvigsson JF, Olén O. Women's Earnings are more Affected by Inflammatory Bowel Disease than Men's: A Register-Based Swedish Cohort Study. J Crohns Colitis 2020; 15:980-987. [PMID: 33245360 PMCID: PMC8218710 DOI: 10.1093/ecco-jcc/jjaa238] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
Abstract
BACKGROUND AND AIMS Patients with inflammatory bowel disease [IBD] are subject to more work disability than the general population. We aimed to estimate the monetary cost of IBD for the individual through assessment of earnings in relation to diagnosis. METHODS Through linkage of national registers, we identified patients aged 30-55 years at first IBD diagnosis in Sweden in 2002-2011, and same-sex IBD-free siblings. We estimated taxable earnings and disposable income from 5 years before to 5 years after diagnosis. RESULTS The 5961 patients [27% Crohn's disease, 68% ulcerative colitis, 4.3% IBD unclassified] had similar taxable earnings to their 7810 siblings until the year of diagnosis, when earnings decreased and remained lower than for siblings during follow-up. The adjusted difference in earnings over the entire 5-year period after diagnosis was -5% [-8212€; 95% confidence interval: -11 458 to -4967€]. The difference was greater in women than in men, and greater in Crohn's disease than in ulcerative colitis. When stratifying for sex and IBD subtype and comparing earnings during each year of follow-up, median annual earnings were lower in women with Crohn's disease and ulcerative colitis than in their sisters during all years of follow-up, whereas the men had similar annual taxable earnings to their brothers. Disposable income was similar between patients and siblings during the investigated time period. CONCLUSION From the year of diagnosis and at least 5 years onwards, patients with IBD had 5% lower earnings than siblings, mainly explained by differences between women with IBD and their sisters. However, there were no differences in disposable income.
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Affiliation(s)
- Åsa H Everhov
- Department of Clinical Science and Education, Södersjukhuset, Karolinska Institutet, Stockholm, Sweden,Clinical Epidemiology Division, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden,Corresponding author: Åsa H. Everhov, Department of Surgery, Stockholm South General Hospital, SE 118 61 Stockholm, Sweden. Tel: +46 8-6162349;
| | - Gustaf Bruze
- Clinical Epidemiology Division, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
| | - Jonas Söderling
- Clinical Epidemiology Division, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
| | - Johan Askling
- Clinical Epidemiology Division, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
| | - Jonas Halfvarson
- Department of Gastroenterology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden
| | - Karin Westberg
- Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden,Division of Surgery, Danderyd Hospital, Stockholm, Sweden
| | - Petter Malmborg
- Department of Clinical Science and Education, Södersjukhuset, Karolinska Institutet, Stockholm, Sweden,Clinical Epidemiology Division, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden
| | - Caroline Nordenvall
- Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden,Department of Pelvic Cancer, Karolinska University Hospital, Stockholm, Sweden
| | - Jonas F Ludvigsson
- Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden,Department of Pediatrics, Örebro University Hospital, Örebro University, Örebro, Sweden
| | - Ola Olén
- Department of Clinical Science and Education, Södersjukhuset, Karolinska Institutet, Stockholm, Sweden,Clinical Epidemiology Division, Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden,Department of Pediatric Gastroenterology and Nutrition, Sachs’ Children and Youth Hospital, Stockholm, Sweden
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9
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McCombie A, Walmsley R, Barclay M, Ho C, Langlotz T, Regenbrecht H, Gray A, Visesio N, Inns S, Schultz M. A Noninferiority Randomized Clinical Trial of the Use of the Smartphone-Based Health Applications IBDsmart and IBDoc in the Care of Inflammatory Bowel Disease Patients. Inflamm Bowel Dis 2020; 26:1098-1109. [PMID: 31644793 DOI: 10.1093/ibd/izz252] [Citation(s) in RCA: 25] [Impact Index Per Article: 5.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/14/2019] [Indexed: 12/12/2022]
Abstract
BACKGROUND Providing timely follow-up care for patients with inflammatory bowel disease in remission is important but often difficult because of resource limitations. Using smartphones to communicate symptoms and biomarkers is a potential alternative. We aimed to compare outpatient management using 2 smartphone apps (IBDsmart for symptoms and IBDoc for fecal calprotectin monitoring) vs standard face-to-face care. We hypothesized noninferiority of quality of life and symptoms at 12 months plus a reduction in face-to-face appointments in the smartphone app group. METHODS Inflammatory bowel disease outpatients (previously seen more often than annually) were randomized to smartphone app or standard face-to-face care over 12 months. Quality of life and symptoms were measured quarterly for 12 months. Acceptability was measured for gastroenterologists and patients at 12 months. RESULTS One hundred people (73 Crohn's disease, 49 male, average age 35 years) consented and completed baseline questionnaires (50 in each group). Intention-to-treat and per-protocol analyses revealed noninferiority of quality of life and symptom scores at 12 months. Outpatient appointment numbers were reduced in smartphone app care (P < 0.001). There was no difference in number of surgical outpatient appointments or number of disease-related hospitalizations between groups. Adherence to IBDsmart (50% perfect adherence) was slightly better than adherence to IBDoc (30% perfect adherence). Good acceptability was reported among most gastroenterologists and patients. CONCLUSIONS Remote symptom and fecal calprotectin monitoring is effective and acceptable. It also reduces the need for face-to-face outpatient appointments. Patients with mild-to-moderate disease who are not new diagnoses are ideal for this system. CLINICAL TRIAL REGISTRATION NUMBER ACTRN12615000342516.
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Affiliation(s)
| | - Russell Walmsley
- University of Auckland and Department of Gastroenterology, Waitemata District Health Board, Auckland, New Zealand
| | - Murray Barclay
- University of Otago and Department of Gastroenterology, Canterbury District Health Board, Christchurch, New Zealand
| | - Christine Ho
- Department of Gastroenterology, Southern District Health Board, Dunedin, New Zealand
| | - Tobias Langlotz
- Department of Information Science, University of Otago, Dunedin, New Zealand
| | - Holger Regenbrecht
- Department of Gastroenterology, Southern District Health Board, Dunedin, New Zealand
| | - Andrew Gray
- Centre for Biostatistics, University of Otago, Dunedin, New Zealand
| | - Nideen Visesio
- Department of Gastroenterology, Waitemata District Health Board, Auckland, New Zealand
| | - Stephen Inns
- Department of Medicine, University of Otago, Wellington, New Zealand and Department of Gastroenterology, Hutt Valley District Health Board, Lower Hutt, New Zealand
| | - Michael Schultz
- Department of Medicine, University of Otago, and Department of Gastroenterology, Southern District Health Board, Dunedin, New Zealand
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10
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Ljungström E, Pihl Lesnovska K, Fredrikson M, Hollman Frisman G, Hjortswang H. Is QUOTE-IBD a valid questionnaire for measurement of quality of care in IBD? A validation study of the Swedish version. Scand J Gastroenterol 2019; 54:1245-1249. [PMID: 31589082 DOI: 10.1080/00365521.2019.1673477] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/04/2023]
Abstract
Background: Quality of care has gained increased attention in IBD. The questionnaire Quality of Care Through the Patient's Eyes - Inflammatory Bowel Disease (QUOTE-IBD) was the first published validated IBD-specific quality of care questionnaire. The aim of this study was to validate the Swedish version of the QUOTE-IBD.Methods: Adult outpatients (n = 400) at a gastroenterology clinic in the south-east of Sweden were asked to fill in the questionnaire. For evaluation of construct validity, patients also responded to one global item for each health care dimension in the QUOTE-IBD, as well as for their overall experience of quality of health care.Results: All quality of care dimensions (QI) correlated significantly (p < .05) with their respective global dimensional item (r = 0.016-0.43), except for accommodation (r = -0.02. Test-retest (n = 32) gave significant results for all the dimensions r = 0.31-0.80 (p < .05), except for accommodation (-0.15, p = ns).Conclusions: The construct validity of the Swedish version of QUOTE-IBD is moderate. This indicates that the QUOTE-IBD may not fully cover the health care aspects important to patients. The high number of item non-response for Performance may be related to the questions being too specific, which may also contribute to the moderate level of construct validity. The reliability is moderate and the internal consistency is good.
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Affiliation(s)
- Emilie Ljungström
- Department of Gastroenterology and Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden
| | - Katarina Pihl Lesnovska
- Department of Gastroenterology and Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden
| | - Mats Fredrikson
- Department of Clinical and Experimental Medicine and Forum Östergötland, Linköping University, Linköping, Sweden
| | - Gunilla Hollman Frisman
- Department of Medical and Health Sciences, Anaesthetics, Operations and Speciality Surgery Centre, Linköping University, Linköping, Sweden
| | - Henrik Hjortswang
- Department of Gastroenterology and Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden
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Willian MK, D'Haens G, Yarlas A, Joshi AV. Changes in health-related quality of life and work-related outcomes for patients with mild-to-moderate ulcerative colitis receiving short-term and long-term treatment with multimatrix mesalamine: a prospective, open-label study. J Patient Rep Outcomes 2018; 2:22. [PMID: 30294708 PMCID: PMC6092727 DOI: 10.1186/s41687-018-0046-5] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/21/2017] [Accepted: 04/11/2018] [Indexed: 12/31/2022] Open
Abstract
Background Ulcerative colitis (UC) is associated with lower health-related quality of life (HRQoL), and with disease activity predicting lower HRQoL and worse work-related outcomes. The current study examined the burden of UC on patients' HRQoL, as well as changes in patients' HRQoL and work-related outcomes following short-term and long-term treatment with multimatrix mesalamine, and their correspondence with changes in disease activity. Methods Data were from an open-label, multinational, prospective trial (ClinicalTrials.gov identifier: NCT01124149) of 717 adults with active mild-to-moderate UC who were treated with 4.8 g/day multimatrix mesalamine tablets once daily for eight weeks (acute phase). Four-hundred sixty-one patients who achieved partial or complete clinical and endoscopic remission subsequently received treatment with daily 2.4 g/day multimatrix mesalamine for 12 months (maintenance phase). At baseline, Week 8, and Month 12, patients were administered patient-reported outcomes (PRO) measures of HRQoL (the SF-12v2® Health Survey [SF-12v2] and Short Inflammatory Bowel Disease Questionnaire) and work-related outcomes (Work Productivity and Activity Impairment questionnaire, UC-specific version). SF-12v2 scores were compared to the U.S. general population using Analysis of Variance models to assess burden of UC on HRQoL. Mixed-effects repeated-measures models compared PRO scores across visits to assess change in PRO scores over time. Correlations examined the correspondence of changes in PRO scores with changes on a modified UC disease activity index (UC-DAI). Results Baseline burden of disease observed on all SF-12v2 domains was partially eliminated at Week 8 and completely eliminated at Month 12. Statistically significant improvements from baseline were observed at both Week 8 and Month 12 for all PRO scores (all P < 0.001). Decreases in UC-DAI scores significantly predicted improvements in PRO scores during the acute treatment phase. Conclusions Patients with UC receiving daily multimatrix mesalamine treatment showed significant improvements in all measured domains of HRQoL and work-related outcomes. Patients who achieved partial or complete clinical and endoscopic remission maintained these improvements for most of these domains over 12 months with continued daily treatment. Changes in HRQoL and work-related outcomes were inversely related to changes in disease activity. Findings support the effectiveness of multimatrix mesalamine for improving, and sustaining improvements, in HRQoL and work-related outcomes.
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Affiliation(s)
| | - Geert D'Haens
- 2Inflammatory Bowel Disease Centre, Academic Medical Centre, University of Amsterdam the Netherlands, Meibergdreef, 91105 AZ Amsterdam, The Netherlands
| | - Aaron Yarlas
- 3Optum, 1301 Atwood Avenue, Suite 311N, Johnston, RI 02919 USA
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12
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Yarlas A, Rubin DT, Panés J, Lindsay JO, Vermeire S, Bayliss M, Cappelleri JC, Maher S, Bushmakin AG, Chen LA, DiBonaventura M. Burden of Ulcerative Colitis on Functioning and Well-being: A Systematic Literature Review of the SF-36® Health Survey. J Crohns Colitis 2018; 12:600-609. [PMID: 29718244 DOI: 10.1093/ecco-jcc/jjy024] [Citation(s) in RCA: 46] [Impact Index Per Article: 6.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/08/2023]
Abstract
BACKGROUND AND AIMS This review is the first to evaluate the burden of ulcerative colitis [UC] on patients' quality of life by synthesizing data from studies comparing scores from the SF-36® Health Survey, a generic measure assessing eight quality-of-life domains, between UC patients and matched reference samples. METHODS A systematic review of the published literature identified articles reporting SF-36 domains or physical and mental component summary scores [PCS, MCS] from UC and reference samples. Burden of disease for each SF-36 domain was then summarized across studies by comparing weighted mean differences in scores between patient and reference samples with minimally important difference thresholds. RESULTS Thirty articles met pre-specified inclusion criteria. SF-36 scores were extracted from five samples of patients with active disease, 11 samples with a mixture of disease activity, five samples of patients in clinical remission, and 13 samples of patients following proctocolectomy with ileostomy or ileal pouch-anal anastomosis, along with respective reference samples. Clinically meaningful burden was observed in samples with active or mixed disease activity [deficits: PCS = 5.6, MCS = 5.5] on all SF-36 domains except Physical Functioning. No burden was observed in samples in remission or post-surgical patients [deficits: PCS = 0.8, MCS = 0.4] except for the General Health perception domain. CONCLUSIONS Patients with active UC experience a clinically meaningful burden of disease across most aspects of quality of life. Patients with inactive UC exhibit negligible disease burden and are comparable to the general population on most quality-of-life outcomes. Thus, treatments which effectively induce and maintain remission may restore physical and mental health status.
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Affiliation(s)
| | - David T Rubin
- University of Chicago Medicine, Inflammatory Bowel Disease Center, Chicago, IL, USA
| | - Julian Panés
- Hospital Clínic de Barcelona, IDIBAPS, CIBERehd, Barcelona, Spain
| | - James O Lindsay
- Centre for Immunobiology, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, London, UK
| | - Séverine Vermeire
- Department of Gastroenterology, University Hospitals Leuven, Leuven, Belgium
| | | | | | | | | | - Lea Ann Chen
- New York University School of Medicine, New York, NY, USA
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13
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Knowles SR, Keefer L, Wilding H, Hewitt C, Graff LA, Mikocka-Walus A. Quality of Life in Inflammatory Bowel Disease: A Systematic Review and Meta-analyses-Part II. Inflamm Bowel Dis 2018; 24:966-976. [PMID: 29688466 DOI: 10.1093/ibd/izy015] [Citation(s) in RCA: 147] [Impact Index Per Article: 21.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/29/2017] [Indexed: 12/11/2022]
Abstract
BACKGROUND There has been burgeoning interest in quality of life (QoL) in inflammatory bowel disease (IBD) in recent decades, with hundreds of studies each year now assessing this outcome. This paper is part 2 of a systematic review evaluating 5 key QoL comparisons within IBD states and relative to others without IBD. Part 1 examined QoL comparing IBD and a healthy/general population and other medically ill groups. Part 2, presented here, examines within-disease comparisons of active/inactive disease, Ulcerative colitis (UC) / Crohn's disease (CD), and change in QoL over time. Outcomes using generic versus IBD-specific QoL measures were also examined. METHODS Adult and pediatric studies were identified through systematic searches of 7 databases from the 1940s (where available) to October 2015. RESULTS Of 6173 abstracts identified, 466 were selected for final review based on controlled design and validated measurement, of which 83 unique studies (75 adult, 8 pediatric) addressed the within-disease comparisons. The pooled mean QoL scores were significantly lower in active versus inactive IBD (n = 26) and for those with CD versus UC (n = 37), consistent across IBD-specific and generic QoL measures, for almost all comparisons. There was significant improvement in QoL over time (n = 37). Study quality was generally low to moderate. The most common measures of QoL were the disease-specific Inflammatory Bowel Disease Questionnaire and generic 36-Item Short Form Survey (SF-36) (adults) and the IBD-specific IMPACT (children). CONCLUSIONS For adults in particular, there was strong confirmation that QoL is poorer during active disease and may be poorer for those with CD. The finding that QoL can improve over time may be encouraging for individuals with this chronic disease.
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Affiliation(s)
- Simon R Knowles
- Department of Psychological Sciences, Faculty of Health, Arts and Design, Swinburne University of Technology, Melbourne, Australia.,Department of Mental Health, St Vincent's Hospital, Melbourne, Australia.,Department of Psychiatry, University of Melbourne, Melbourne, Australia.,Department of Gastroenterology, Royal Melbourne Hospital, Melbourne, Australia
| | - Laurie Keefer
- Division of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY, USA
| | - Helen Wilding
- Department of Mental Health, St Vincent's Hospital, Melbourne, Australia.,Library Service, St Vincent's Hospital, Melbourne, Australia
| | - Catherine Hewitt
- York Trials Unit, Department of Health Sciences, University of York, United Kingdom
| | - Lesley A Graff
- Department of Clinical Health Psychology, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, Canada
| | - Antonina Mikocka-Walus
- Department of Health Sciences, University of York, York, United Kingdom.,School of Psychology, University of Adelaide, Adelaide, Australia.,School of Psychology, Deakin University, Burwood, Australia
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14
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Yarlas A, D’Haens G, Willian MK, Teynor M. Health-Related Quality of Life and Work-Related Outcomes for Patients With Mild-to-Moderate Ulcerative Colitis and Remission Status Following Short-Term and Long-Term Treatment With Multimatrix Mesalamine: A Prospective, Open-Label Study. Inflamm Bowel Dis 2018; 24:450-463. [PMID: 29361097 PMCID: PMC6176889 DOI: 10.1093/ibd/izx041] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/14/2017] [Indexed: 12/29/2022]
Abstract
BACKGROUND Disease activity of patients with ulcerative colitis (UC) predicts health-related quality of life (HRQL) and work-related outcomes (eg, absenteeism, productivity). We tested whether outcomes differed among patients in complete (clinical and endoscopic) remission, partial remission, or not in remission following treatment with multimatrix mesalamine. METHODS Data were from an open-label, multicountry, prospective trial (ClinicalTrials.gov identifier: NCT01124149) of 717 adults with active mild-to-moderate UC treated with 4.8 g/day multimatrix mesalamine tablets for 8 weeks (induction period); 459 patients who achieved partial or complete remission received daily 2.4 g/day multimatrix mesalamine for 12 additional months (maintenance period). HRQL (SF-12v2 Health Survey and Short Inflammatory Bowel Disease Questionnaire) and work-related outcomes (Work Productivity and Activity Impairment questionnaire) were assessed at baseline and final visits of each treatment period. Differences in scores by remission status within each treatment period were tested using analysis of variance and analysis of covariance models, whereas mixed-effects models with repeated measures tested changes over time. RESULTS At their final visit of each treatment period, patients in partial remission scored significantly better on all HRQL and work-related domains than patients not in remission (all Bonferroni-adjusted P < 0.05). Scores for patients in partial remission were, almost without exception, statistically equivalent to those for patients in complete remission. Fluctuating between complete and partial remission during maintenance treatment had no impact on outcomes. CONCLUSIONS Patients in partial remission following multimatrix mesalamine treatment had HRQL and work-related outcomes equivalent to patients in complete remission. Achievement and maintenance of partial remission may be sufficient for improvements in patients' functioning, well-being, and work performance.
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Affiliation(s)
- Aaron Yarlas
- Optum, Johnston, RI, United States,Address correspondence to: Aaron Yarlas, PhD, Optum, 1301 Atwood Avenue, Johnston, RI 02919 USA.
| | - Geert D’Haens
- Inflammatory Bowel Disease Centre, Academic Medical Centre, University of Amsterdam, The Netherlands
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15
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Psychometric validation of the SF-36® Health Survey in ulcerative colitis: results from a systematic literature review. Qual Life Res 2017; 27:273-290. [DOI: 10.1007/s11136-017-1690-6] [Citation(s) in RCA: 18] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 08/19/2017] [Indexed: 12/12/2022]
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16
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Effect of threatening life experiences and adverse family relations in ulcerative colitis: analysis using structural equation modeling and comparison with Crohn's disease. Eur J Gastroenterol Hepatol 2017; 29:577-586. [PMID: 28350749 DOI: 10.1097/meg.0000000000000826] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/20/2022]
Abstract
BACKGROUND AND AIMS We published that threatening life experiences and adverse family relations impact Crohn's disease (CD) adversely. In this study, we examine the influence of these stressors in ulcerative colitis (UC). PATIENTS AND METHODS Patients completed demography, economic status (ES), the Patient-Simple Clinical Colitis Activity Index (P-SCCAI), the Short Inflammatory Bowel Disease Questionnaire (SIBDQ), the Short-Form Health Survey (SF-36), the Brief Symptom Inventory (BSI), the Family Assessment Device (FAD), and the List of Threatening Life Experiences (LTE). Analysis included multiple linear and quantile regressions and structural equation modeling, comparing CD. RESULTS UC patients (N=148, age 47.55±16.04 years, 50.6% women) had scores [median (interquartile range)] as follows: SCAAI, 2 (0.3-4.8); FAD, 1.8 (1.3-2.2); LTE, 1.0 (0-2.0); SF-36 Physical Health, 49.4 (36.8-55.1); SF-36 Mental Health, 45 (33.6-54.5); Brief Symptom Inventory-Global Severity Index (GSI), 0.5 (0.2-1.0). SIBDQ was 49.76±14.91. There were significant positive associations for LTE and SCAAI (25, 50, 75% quantiles), FAD and SF-36 Mental Health, FAD and LTE with GSI (50, 75, 90% quantiles), and ES with SF-36 and SIBDQ. The negative associations were as follows: LTE with SF-36 Physical/Mental Health, SIBDQ with FAD and LTE, ES with GSI (all quantiles), and P-SCCAI (75, 90% quantiles). In structural equation modeling analysis, LTE impacted ES negatively and ES impacted GSI negatively; LTE impacted GSI positively and GSI impacted P-SCCAI positively. In a split model, ES had a greater effect on GSI in UC than CD, whereas other path magnitudes were similar. CONCLUSION Threatening life experiences, adverse family relations, and poor ES make UC patients less healthy both physically and mentally. The impact of ES is worse in UC than CD.
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Tsoukka M, Jelastopulu E, Lavranos G, Charalambous G. Estimation of quality of life in Cypriot patients with inflammatory bowel disease. World J Gastroenterol 2017; 23:121-126. [PMID: 28104987 PMCID: PMC5221275 DOI: 10.3748/wjg.v23.i1.121] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/28/2016] [Revised: 10/20/2016] [Accepted: 11/14/2016] [Indexed: 02/06/2023] Open
Abstract
AIM To investigate the health-related quality of life (HRQoL) of patients suffering with idiopathic inflammatory bowel disease (IBD). METHODS The Greek validated version of the Short Inflammatory Bowel Disease Questionnaire was used for evaluating the quality of life of IBD patients. The questionnaire was distributed to 100 consecutive patients suffering from IBD and presenting for a clinic appointment at the endoscopy unit of Larnaca General Hospital during the period from October to November 2012. The criteria for participating in this study were constituted by the documented diagnosis of either ulcerative colitis (UC) or Crohn's disease (CD) after endoscopy and histologic examination at least 6 months before the study, adult patients (18 years old or older), the capability of verbal communication and the patient's written consent for attending this study. The majority of the questionnaires were completed by a nurse practitioner who specializes in IBD patient care. RESULTS Regarding the physical dimension in patients with UC, males scored significantly higher than females (4.2 vs 3.4, P = 0.023). Higher scores were also observed in UC patients younger than 35 or older than 50 years (4.0 and 4.2 vs 3.2, respectively, P = 0.021). The psychological dimension revealed similar results in patients with UC, with males, and older ages scoring higher (5.0 vs 3.0, P = 0.01 and 4.7 vs 2.7, P < 0.5, respectively), whereas regarding CD higher scores were observed in married compared to unmarried (3.83 vs 2.33, P = 0.042). No statistical differences in any parameters in the social dimension were observed. Regarding the treatment of, patients with CD, overall higher scores were observed when treated with biological factors compared to standard therapy in all dimensions but with statistical significant difference in the social dimension (5.00 vs 3.25, P = 0.045). CONCLUSION The study reveals a negative impact of IBD on HRQoL. Increased risks are age and gender in patients with UC and family status in patients with CD.
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Van Assche G, Peyrin-Biroulet L, Sturm A, Gisbert JP, Gaya DR, Bokemeyer B, Mantzaris GJ, Armuzzi A, Sebastian S, Lara N, Lynam M, Rojas-Farreras S, Fan T, Ding Q, Black CM, Kachroo S. Burden of disease and patient-reported outcomes in patients with moderate to severe ulcerative colitis in the last 12 months - Multicenter European cohort study. Dig Liver Dis 2016; 48:592-600. [PMID: 26935454 DOI: 10.1016/j.dld.2016.01.011] [Citation(s) in RCA: 27] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/30/2015] [Revised: 01/14/2016] [Accepted: 01/18/2016] [Indexed: 12/11/2022]
Abstract
BACKGROUND Treatment of ulcerative colitis (UC) is aimed at maintaining corticosteroid-free remission and improving quality of life (QoL). AIM Assess patients' perception of disease burden and unmet clinical needs in moderate/severe UC patients. METHODS Adults surgery-free conventionally treated patients with Mayo score ≥6 were enrolled in an observational, cross-sectional, retrospective study in 11 European countries. Disease control was defined as Mayo score ≤2 with no sub-score >1. No corticosteroid was used the previous two months. Unmet clinical needs were defined as: non-controlled disease, self-perception of 'moderate'/'severe' disease, and dissatisfaction with treatments. Disease burden on QoL and work productivity were assessed (EuroQol-5D-5L, Short Inflammatory Bowel Disease Questionnaire (SIBDQ) and Work Productivity and Activity Impairment (WPAI) in UC questionnaire). RESULTS UC patients (n=253) with mean Mayo score at enrolment of 4.9, 44.3% of patients had Mayo score ≥6. Main treatment was 5-ASA (75%). Overall, 25% met the composite endpoint for unmet clinical needs. Mean (SD) questionnaire scores were: EQ-5D-5L-VAS, 71 (19.1), EQ-5D-5L utility, 0.77 (0.19), SIBDQ, 4.8 (1.3), and WPAI, 26% (32%). CONCLUSIONS Patients with moderate/severe UC in the last 12 months treated with conventional therapies felt that their disease was not controlled and 25% reported unmet clinical needs. QoL and work productivity were seriously impaired.
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Affiliation(s)
- Gert Van Assche
- Division of Gastroenterology, University Hospitals Leuven, Leuven, Belgium.
| | - Laurent Peyrin-Biroulet
- Department of Hepato-Gastroenterology and Inserm U954, University Hospital of Nancy, Lorraine University, Vandoeuvre-lès-Nancy, France
| | - Andreas Sturm
- Department of Gastroenterology, DRK Kliniken Berlin I Westend, Berlin, Germany
| | - Javier P Gisbert
- Gastroenterology Unit, Hospital Universitario de La Princesa, Instituto de Investigación Sanitaria Princesa (IIS-IP) and Centro de Investigación Biomédica and Red de Enfermedades Hepáticas y Digestivas (CIBEREHD), Madrid, Spain
| | - Daniel R Gaya
- Gastroenterology Unit, Glasgow Royal Infirmary, Glasgow, UK
| | | | | | - Alessandro Armuzzi
- IBD Unit, Complesso Integrato Columbus, Catholic University, Rome, Italy
| | - Shaji Sebastian
- Gastroenterology and IBD Unit, Hull and East Yorkshire Hospitals NHS Trust, Hull, UK
| | - Nuria Lara
- IMS Health, Real World Evidence Solutions, Barcelona, Spain
| | - Mark Lynam
- IMS Health, Real World Evidence Solutions, Barcelona, Spain
| | | | - Tao Fan
- Merck & Co., Inc., Rahway, NJ, United States
| | - Qian Ding
- Merck & Co., Inc., Rahway, NJ, United States
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Mahalli AAE, Alharthi HMA. Assessment of health-related quality of life of patients with inflammatory bowel diseases in Eastern Province, Saudi Arabia. J Infect Public Health 2016; 10:93-101. [PMID: 27020642 DOI: 10.1016/j.jiph.2016.02.008] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/25/2015] [Revised: 01/22/2016] [Accepted: 02/20/2016] [Indexed: 01/30/2023] Open
Abstract
Inflammatory bowel disease patients have impaired quality of life with physical, social and emotional dysfunction. This project aimed to assess the effects of socio-demographic and clinical variables on quality of life and to identify its predictors. In a cross-sectional paper-based study, 50 consecutive non-selected patients attending the teaching hospital completed a disease-specific McMaster quality of life tool. Socio-demographic and clinical data were collected from patients' records. The t-test and Mann-Whitney test were used to determine the probability of significant differences between quality of life domains and independent variables. Multiple linear regression was used to determine quality of life predictors. Younger and highly educated patients had higher social scores. Those with shorter disease durations had higher systemic scores. Patients in remission had higher systemic, social, bowel and overall scores. Relapse was a significant predictor of decreased systemic, social, bowel and overall scores. Long disease duration was a significant predictor of decreased systemic and overall scores. Younger age at disease onset was a significant predictor of decreased emotional score. However, high education was a significant predictor of improved social score. Relapse, long disease duration, low education and young age at disease onset were associated with low quality of life. Prospective studies should investigate how interventions addressing these predictors may lead to improved quality of life.
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Affiliation(s)
- Azza A E Mahalli
- College of Applied Medical Sciences, University of Dammam, Saudi Arabia.
| | - Hana M A Alharthi
- College of Applied Medical Sciences, University of Dammam, Saudi Arabia.
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Lovén Wickman U, Yngman-Uhlin P, Hjortswang H, Riegel B, Stjernman H, Hollman Frisman G. Self-Care Among Patients With Inflammatory Bowel Disease: An Interview Study. Gastroenterol Nurs 2015; 39:121-8. [PMID: 26166423 PMCID: PMC4830746 DOI: 10.1097/sga.0000000000000120] [Citation(s) in RCA: 16] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/02/2023] Open
Abstract
Inflammatory bowel disease (IBD) is a chronic disease of unknown etiology. The disease occurs early in life and the burden of symptoms is significant. Patients need to perform self-care to handle their symptoms, but knowledge about what kind of self-care patients do is limited and these individuals need to learn how to manage the symptoms that arise. The aim of this study was to explore self-care among patients with IBD. Twenty adult patients with IBD, 25–66 years of age, were interviewed. Data were analyzed by performing a qualitative content analysis. Four categories with 10 subcategories emerged from the analysis of the interviews. The self-care patients perform consists of symptom recognition (subcategories: physiological sensations and psychological sensations), handling of symptoms (subcategories: adapting the diet, using medical treatment, stress management, and using complementary alternative medicine), planning life (subcategories: planning for when to do activities and when to refrain from activities), and seeking new options (subcategories: seeking knowledge and personal contacts). Self-care consists of symptom recognition, handling life through planning, and accommodating the existing situation with the ultimate goal of maintaining well-being. Being one step ahead facilitates living with IBD. A decision to actively participate in care of a chronic illness is a prerequisite for self-care. Healthcare professionals must consider patients' potential for and desire for self-care when giving advice on self-care activities. Doing so may help people better cope with IBD.
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Affiliation(s)
- Ulrica Lovén Wickman
- Ulrica Lovén Wickman, MScN, RN, is Doctoral Student, Division of Nursing Sciences, Linköping University, Linköping and County Council of Kalmar, Kalmar, Sweden. Pia Yngman-Uhlin, PhD, RN, is Senior Lecturer, Research and Development Unit in Local Health Care and Department of Medical and Health Sciences, Linköping University, Linköping, Sweden. Henrik Hjortswang, PhD, MD, is Assistant Professor, Department of Clinical and Experimental Medicine, Division of Gastroenterology, Linköping University and County Council of Östergötland, Östergötland, Sweden. Barbara Riegel, DNSc, RN, FAAN, FAHA, is Professor, School of Nursing, University of Pennsylvania, Philadelphia. Henrik Stjernman, PhD, MD, is Chief Physician, Department of Medicine, County Hospital Ryhov, County Council of Jönköping, Jönköping, Sweden. Gunilla Hollman Frisman, PhD, RN, is Senior Lecturer, Assistant Professor, Department of Medical and Health Sciences, Division of Nursing Sciences, Linköping University; and Anaesthetics, Operations and Speciality Surgery Centre, County Council of Östergötland, Linköping, Sweden
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Myrelid P, Øresland T. A reappraisal of the ileo-rectal anastomosis in ulcerative colitis. J Crohns Colitis 2015; 9:433-8. [PMID: 25863275 DOI: 10.1093/ecco-jcc/jjv060] [Citation(s) in RCA: 34] [Impact Index Per Article: 3.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/30/2015] [Accepted: 04/07/2015] [Indexed: 02/04/2023]
Abstract
Colectomy is still frequently required in the care of ulcerative colitis. The most common indications are either non-responding colitis in the emergency setting, chronic active disease, steroid-dependent disease or neoplastic change like dysplasia or cancer. The use of the ileal pouch anal anastomosis has internationally been the gold standard, substituting the rectum with a pouch. Recently the use of the ileorectal anastomosis has increased in frequency as reconstructive method after subtotal colectomy. Data from centres using ileorectal anastomosis have shown the method to be safe, with functionality and risk of failure comparable to the ileal pouch anal anastomosis. The methods have different advantages as well as disadvantages, depending on a number of patient factors and where in life the patient is at time of reconstruction. The ileorectal anastomosis could, together with the Kock continent ileostomy, in selected cases be a complement to the ileal pouch anal anastomosis in ulcerative colitis and should be discussed with the patient before deciding on reconstructive method.
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Affiliation(s)
- Pär Myrelid
- Department of Surgery, County Council of Östergötland, and Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden
| | - Tom Øresland
- Faculty of Medicine, University of Oslo, and Department of GI Surgery, Akershus University Hospital, Oslo, Norway
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Tabibian A, Tabibian JH, Beckman LJ, Raffals LL, Papadakis KA, Kane SV. Predictors of health-related quality of life and adherence in Crohn's disease and ulcerative colitis: implications for clinical management. Dig Dis Sci 2015; 60:1366-74. [PMID: 25559754 DOI: 10.1007/s10620-014-3471-1] [Citation(s) in RCA: 58] [Impact Index Per Article: 5.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/07/2014] [Accepted: 11/27/2014] [Indexed: 12/28/2022]
Abstract
BACKGROUND AND AIMS Inflammatory bowel disease (IBD) is associated with impaired health-related quality of life (HRQOL) and adherence. Our aim was to identify demographic, clinical, and psychosocial predictors of impaired HRQOL and non-adherence to provider recommendations. METHODS Adults with Crohn's disease (CD) or ulcerative colitis (UC) residing within the USA were recruited from online IBD support groups for participation in this cross-sectional study. Data were collected online through standardized instruments, including the Inflammatory Bowel Disease Questionnaire and the Medical Outcomes Study (MOS) general adherence scale. Bivariate analyses and multivariate linear regression were used to assess predictors of HRQOL and adherence. RESULTS We recruited 136 individuals, among whom median age was 35 years (range 18-75), and 82 % were female. 57 % had CD, and 43 % had UC. Predictors of lower HRQOL among CD patients were perceived stress (p < 0.0001), number of CD relapses (p < 0.0001), and female gender (p = 0.0015), while among UC patients they were perceived stress (p < 0.0001) and number of UC relapses (p = 0.0017). Predictors of lower adherence to provider recommendations in CD were perceived stress (p = 0.0007) and older age (p = 0.041), while in UC, perceived stress was the only predictor of lower adherence (p = 0.022). CONCLUSIONS Among patients with IBD, a higher level of perceived stress is a strong predictor of lower HRQOL and lower adherence to provider recommendations. Additionally, females with CD and patients with higher number of IBD relapses may be at risk of lower HRQOL. Psychological interventions, including physician-facilitated conversations, psychological screeners, and a multidisciplinary approach, may help address impaired HRQOL and adherence and merit further study.
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Affiliation(s)
- Anilga Tabibian
- Department of Psychiatry and Psychology, Mayo Clinic, 200 First St. SW, Rochester, MN, 55905, USA,
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Zheng K, Zhang S, Wang C, Zhao W, Shen H. Health-related quality of life in Chinese patients with mild and moderately active ulcerative colitis. PLoS One 2015; 10:e0124211. [PMID: 25915777 PMCID: PMC4411120 DOI: 10.1371/journal.pone.0124211] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/19/2014] [Accepted: 03/10/2015] [Indexed: 12/26/2022] Open
Abstract
Background Ulcerative colitis (UC) impairs the health-related quality of life (HRQOL). The difference in HRQOL between patients with mild and moderately active UC is not well-defined. Few studies have been conducted to explore the factors that influence HRQOL in Chinese patients. Our study aims were to (1) compare HRQOL of mildly active UC patients with moderate patients; (2) explore the factors that influence HRQOL in Chinese patients with UC; and (3) analyze demographic and disease characteristics of UC in China. Methods A total of 110 mild and 114 moderate patients with UC were enrolled. The demographic and disease characteristics were recorded. HRQOL was measured by the Chinese version of the inflammatory bowel disease questionnaire (IBDQ) between mild and moderate patients, male and female patients, and different disease distributions. Stepwise regression analysis was used to assess factors influencing the IBDQ score. Results Patients with moderate UC had significantly lower IBDQ total scores compared to patients with mild UC (P=0.001). The IBDQ total score had a negative correlation with the Mayo score (r=–0.263, P<0.001). Stepwise regression analysis showed that the disease activity index and gender had an influence on the IBDQ total score (P<0.05). The female patients had a lower score than the male patients (P<0.05), especially in the emotional function domain (P=0.002). Different disease distributions were not statistically significant in the IBDQ total score (P=0.183). Conclusions UC has a negative influence on HRQOL. HRQOL in patients with moderate UC was lower than HRQOL in patients with mild UC, as measured by the IBDQ. UC disease activity has a negative correlation with HRQOL. Gender and the disease activity index are important factors involved in the impairment of HRQOL in Chinese patients with UC. Chinese females may benefit from increased psychological care as part of UC therapy.
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Affiliation(s)
- Kai Zheng
- Department of Gastroenterology, Affiliated Hospital of Nanjing University of Chinese Medicine, Nanjing, Jiangsu, China
| | - Shengsheng Zhang
- Department of Gastroenterology, Beijing Hospital of Chinese Medicine, Beijing, China
| | - Chuijie Wang
- Department of Gastroenterology, Affiliated Hospital of Liaoning University of Chinese Medicine, Shenyang, Liaoning, China
| | - Wenxia Zhao
- Department of Gastroenterology, the First Affiliated Hospital of Henan University of Chinese Medicine, Zhengzhou, Henan, China
| | - Hong Shen
- Department of Gastroenterology, Affiliated Hospital of Nanjing University of Chinese Medicine, Nanjing, Jiangsu, China
- * E-mail:
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Health-related quality of life in inflammatory bowel disease in a European-wide population-based cohort 10 years after diagnosis. Inflamm Bowel Dis 2015; 21:337-44. [PMID: 25569735 PMCID: PMC4345967 DOI: 10.1097/mib.0000000000000272] [Citation(s) in RCA: 39] [Impact Index Per Article: 3.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/14/2023]
Abstract
BACKGROUND Chronic inflammatory bowel disease (IBD) negatively affects the patient's health-related quality of life (HRQoL). Only a few population-based studies have compared the HRQoL of patients with the background population. The aim of this study was to evaluate the HRQoL in a European cohort of patients with ulcerative colitis and Crohn's disease 10 years after diagnosis (European Collaborative study group of Inflammatory Bowel Disease) compared with the national background population in each country and to assess possible country-specific differences. METHODS Patients with IBD from 7 European countries were invited to a follow-up visit 10 years after their diagnosis of IBD. We assessed their clinical and demographic data, including the generic HRQoL questionnaire short form health survey-36. Countrywise comparison with the background population was performed with z-scores using the Cohen's effect size index. RESULTS Seven hundred sixty-nine patients were eligible for the study. We registered statistically significant and clinically relevant decreases in the short form health survey-36 dimensional scores in patients with symptoms at the time of follow-up and for patients reporting sick leave during the previous year or having received disablement pension. In the Netherlands and Norway, there was a moderate difference between the patients with IBD and the background population for the general health dimension. CONCLUSIONS Overall, the HRQoL was not reduced in the IBD cohort compared with the background populations. However, in addition to older age and female gender, current symptoms at follow-up, disablement pension, and sick leave during the previous year were significantly associated with a reduced HRQoL in patients with IBD.
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Lahat A, Neuman S, Eliakim R, Ben-Horin S. Partners of patients with inflammatory bowel disease: how important is their support? Clin Exp Gastroenterol 2014; 7:255-9. [PMID: 25114579 PMCID: PMC4122224 DOI: 10.2147/ceg.s62173] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/15/2023] Open
Abstract
BACKGROUND Chronic inflammatory bowel disease (IBD) causes significant distress for patients and their families. Data assessing the need of these patients for support and sharing with their partners are scarce. The aim of this study was to assess patients' views regarding sharing of information with their partners. METHODS Ambulatory IBD patients treated at the Chaim Sheba Medical Center between January 2011 and January 2013 were asked to complete an anonymous questionnaire. Patients who had a stable partner and completed more than 95% of the questionnaire were included. RESULTS Of 134 patients who agreed to complete the questionnaire, 101 met the inclusion criteria, 53 were men (mean age 45±15 years), and 50% had academic education. Only 42% of patients reported that their partner accompanied them to the doctor. However, 93% shared health problems with their partner, 64% would have liked their partner to receive more medical information, and 70% would like their partner to be more involved. The majority (88%) believed that more partner involvement could help them deal better with the disease, and 70% thought that support groups for partners should be established. No association was found between patients' demographic data and their answers. Patients who felt that partner involvement could help them to deal with the disease tended to share medical information with their partners and wanted them to be more involved in health care decision-making (P<0.001). CONCLUSION Most IBD patients in our study wanted their partner to be more involved with their health problems, and believed that greater partner involvement could help them deal better with their disease. Therefore, more attention should be focused on gaining better cooperation from patients' families.
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Affiliation(s)
- Adi Lahat
- Department of Gastroenterology, Chaim Sheba Medical Center, Sackler School of Medicine, Tel-Aviv University, Tel-Aviv, Israel
| | - Sandra Neuman
- Department of Gastroenterology, Chaim Sheba Medical Center, Sackler School of Medicine, Tel-Aviv University, Tel-Aviv, Israel
| | - Rami Eliakim
- Department of Gastroenterology, Chaim Sheba Medical Center, Sackler School of Medicine, Tel-Aviv University, Tel-Aviv, Israel
| | - Shomron Ben-Horin
- Department of Gastroenterology, Chaim Sheba Medical Center, Sackler School of Medicine, Tel-Aviv University, Tel-Aviv, Israel
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Moradkhani A, Beckman LJ, Tabibian JH. Health-related quality of life in inflammatory bowel disease: psychosocial, clinical, socioeconomic, and demographic predictors. J Crohns Colitis 2013; 7:467-73. [PMID: 22884758 DOI: 10.1016/j.crohns.2012.07.012] [Citation(s) in RCA: 100] [Impact Index Per Article: 8.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/03/2012] [Revised: 07/12/2012] [Accepted: 07/12/2012] [Indexed: 02/08/2023]
Abstract
BACKGROUND AND AIMS Individuals with inflammatory bowel disease (IBD) have impaired health-related quality of life (HRQOL). Managing HRQOL is increasingly becoming an important treatment consideration in IBD. Understanding factors that impact HRQOL may facilitate interventions to improve HRQOL and overall IBD management. We hypothesized that psychosocial variables, namely perceived stress, perceived social support, and knowledge, would be associated with HRQOL among individuals with IBD. METHODS A total of 134 adults with IBD were recruited online from IBD support groups. HRQOL was measured using the inflammatory bowel disease questionnaire (IBDQ). Perceived stress, perceived social support, and knowledge of IBD were measured using standardized questionnaires. Clinical and demographic variables were gathered through a 16-item study questionnaire. Univariate analyses were conducted to determine which variables were associated with HRQOL, and those that were statistically significant were entered into a multivariate regression model. RESULTS Results from univariate analyses revealed significantly lower HRQOL in individuals who: reported higher perceived stress, higher number of previous hospitalizations and relapses, lower perceived support, lower income, were unemployed, and were female. Multivariate analyses revealed that the variables most strongly associated with HRQOL were perceived stress (p<0.001), number of previous IBD relapses (p<0.001), gender (p<0.001), and perceived social support (p<0.05). CONCLUSION Individuals with IBD who report higher perceived stress, lower perceived social support, greater number of relapses, or are female may be at increased risk for decreased HRQOL. Prospective studies should investigate how interventions addressing these factors may lead to improved HRQOL.
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Jaghult S, Saboonchi F, Moller J, Johansson UB, Wredling R, Kapraali M. Stress as a Trigger for Relapses in IBD: A Case-Crossover Study. Gastroenterology Res 2013; 6:10-16. [PMID: 27785220 PMCID: PMC5051114 DOI: 10.4021/gr528e] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 02/19/2013] [Indexed: 12/18/2022] Open
Abstract
Background It is important to identify factors that influence the risk of relapses in inflammatory bowel disease. Few studies have been conducted and with limited methodology. This prospective case-crossover study, aims to examine whether perceived stress has a short-term acute effect, namely whether it acts as a trigger, on the risk of relapse in inflammatory bowel disease. Methods Sixty patients with inflammatory bowel disease and in remission were included. The case-crossover design was employed, which is an epidemiological design developed to study triggers for acute events and diseases. To collect information regarding symptoms and potential trigger factors, such as perceived stress, a structured diary was constructed. The participants were instructed to fill in the diary daily during six months. Fifty patients completed the study. Results The analysis showed an effect for high level of perceived stress. Being exposed to “quite a lot” of stress, yield an increase in risk for relapse during the forthcoming day (OR = 4.8, 95% CI 1.09 - 21.10). No statistically increased risk for lower levels of perceived stress was found, although elevated effect estimates were found for “some” stress. Conclusion This study supports earlier findings regarding perceived stress as an important factor in triggering relapses in IBD. However, this is the first case-crossover study performed to explore the trigger risk of stress in this population. Further investigations with larger patient samples are needed to confirm the findings.
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Affiliation(s)
- Susanna Jaghult
- Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Sweden
| | - Fredrik Saboonchi
- Red Cross University, Sweden; Karolinska Institute, Department of Clinical Neuroscience, Division of Insurance Medicine, Sweden; University of Stockholm, Stress Research Institute, Sweden
| | - Jette Moller
- Karolinska Institute, Department of Public Health Sciences, Division of Public Health Epidemiology, Sweden
| | - Unn-Britt Johansson
- Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Sweden; Sophiahemmet University College, Sweden
| | - Regina Wredling
- Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Sweden
| | - Marjo Kapraali
- Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Sweden
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Kalafateli M, Triantos C, Theocharis G, Giannakopoulou D, Koutroumpakis E, Chronis A, Sapountzis A, Margaritis V, Thomopoulos K, Nikolopoulou V. Health-related quality of life in patients with inflammatory bowel disease: a single-center experience. Ann Gastroenterol 2013; 26:243-248. [PMID: 24714279 PMCID: PMC3959431] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/19/2012] [Accepted: 01/30/2013] [Indexed: 10/28/2022] Open
Abstract
BACKGROUND Inflammatory bowel disease (IBD) has a negative impact on health-related quality of life (HRQoL). The aim of the study was to assess HRQoL of IBD patients in South-Western Greece. METHODS 89 IBD patients [38 (42.7%) Crohn's disease (CD), 51 (57.3%) ulcerative colitis (UC)] were included. HRQoL was assessed using IBD questionnaire (IBDQ), which tests four health domains: bowel symptoms (BS), systemic symptoms (SS), emotional function (EF) and social function (SF). Total score (TS) ranges from 32 to 224. Disease activity was measured using Crohn's Disease Activity Index (CDAI) (CD), and Truelove and Witts classification (UC). The impact of epidemiological and disease-specific characteristics on IBDQ was studied. RESULTS No statistically significant difference was found in all IBDQ scores between UC and CD patients. No correlation was found regarding age, sex, smoking, anemia, disease duration and use of corticosteroids, 5-aminosalicylates or immunosuppressives with HRQoL. The factors found to have a major negative impact on all IBDQ scores was disease severity both in CD and UC, and education on bowel symptoms in CD. On multivariate analysis, only high disease activity had significant effects on total and dimensional scores of IBDQ in UC (TS, P=0.005; BS, P<0.001; SS, P=0.004; EF, P=0.05; SF, P=0.001), whereas in CD, only CDAI (TS, P=0.001; BS, P=0.004; SS, P=0.001; EF, P=0.003; SF, P=0.003) and education (TS, P=0.047; BS, P=0.004; SS, P=0.03) had significant effects. CONCLUSIONS IBD patients in remission experience better HRQoL than patients with active disease. Induction of remission should become the mainstay of care regarding improvement in HRQoL.
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Affiliation(s)
- Maria Kalafateli
- Department of Gastroenterology, University Hospital of Patras, Patras, Greece
| | - Christos Triantos
- Department of Gastroenterology, University Hospital of Patras, Patras, Greece
| | - Georgios Theocharis
- Department of Gastroenterology, University Hospital of Patras, Patras, Greece
| | | | | | - Aristidis Chronis
- Department of Gastroenterology, University Hospital of Patras, Patras, Greece
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Haapamäki J, Tanskanen A, Roine RP, Blom M, Turunen U, Mäntylä J, Färkkilä MA, Arkkila PET. Medication use among inflammatory bowel disease patients: excessive consumption of antidepressants and analgesics. Scand J Gastroenterol 2013; 48:42-50. [PMID: 23163864 DOI: 10.3109/00365521.2012.743584] [Citation(s) in RCA: 24] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/04/2023]
Abstract
OBJECTIVE Little is known about differences in the use of medications between inflammatory bowel disease (IBD) patients and the general population. The aims of this study were to observe those differences and to discuss reasons for them. The relation between medication use and HRQoL of IBD patients was examined. MATERIAL AND METHODS The use of prescribed medication of 2831 IBD patients and 5662 control subjects were scrutinized and compared by utilizing a national reimbursement register. Annual costs and number of defined daily doses (DDD) of medications were calculated. The relationship between medications and health-related quality of life (HRQoL) of IBD patients was examined by using a postal questionnaire including a generic (15D) and a disease-specific (IBDQ) HRQoL tool. The questionnaire also included demographic questions and questions about IBD patients' use of biological medications. RESULTS Use of antidepressants (OR: 1.44, 95% CI: 1.28-1.61), anxiolytics (OR: 1.52, 95% CI: 1.31-1.78), oral bisphosphonates (OR: 6.08, 95% CI: 4.56-8.11), cardiovascular medications (OR: 1.38, 95% CI: 1.24-1.54), antibiotics (OR: 4.01, 95% CI: 3.57-4.51), proton pump inhibitors (OR: 3.90, 95% CI: 3.48-4.36), and nonsteroidal anti-inflammatory analgesics (OR: 1.17, 95% CI: 1.07-1.28) was significantly more common in IBD than among the controls. Those who used antidepressants, anxiolytics, or analgesics had significantly impaired HRQoL (p < 0.001). CONCLUSIONS IBD patients and general population differ in terms of their medicine use in many respects, and especially use of analgesics and antidepressants is more common among IBD patients. Use of antidepressants, anxiolytics, and analgesics was related to impaired HRQoL.
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Affiliation(s)
- Johanna Haapamäki
- Department of Medicine, Division of Gastroenterology, Helsinki University Central Hospital, Helsinki, Finland.
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Hoivik ML, Moum B, Solberg IC, Cvancarova M, Hoie O, Vatn MH, Bernklev T. Health-related quality of life in patients with ulcerative colitis after a 10-year disease course: results from the IBSEN study. Inflamm Bowel Dis 2012; 18:1540-9. [PMID: 21936030 DOI: 10.1002/ibd.21863] [Citation(s) in RCA: 59] [Impact Index Per Article: 4.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/08/2011] [Accepted: 07/20/2011] [Indexed: 12/27/2022]
Abstract
BACKGROUND Ulcerative colitis (UC) negatively affects health-related quality of life (HRQoL), but population-based and long-term data on this topic are scarce. Our aim was to determine the HRQoL in UC patients after a 10-year disease duration. METHODS UC patients from a population-based inception cohort met at a prescheduled 10-year follow-up visit. In addition to a clinical examination, interview, and blood samples, the patients completed the Short Form 36 (SF-36) and the Norwegian Inflammatory Bowel Disease Questionnaire (N-IBDQ). The SF-36 scores were compared to scores from a general population sample using one-sample t-tests. Standardized scores were calculated and interpreted according to Cohen's effect size index. The associations between relevant clinical and demographic factors and HRQoL were examined through linear regression analyses. RESULTS A total of 196 patients completed the HRQoL questionnaires (response rate: 80%), of whom 54% were women; the mean age of all patients was 48 years (range: 22-86). The SF-36 scores were comparable to those of the general population except for lower scores in the General Health dimension. The SF-36 scores were significantly lower in the presence of current symptoms, in patients who had used corticosteroids, and in patients who reported not working. Overall N-IBDQ scores were equivalent to scores of patients in remission. Female gender, work status (not working), current symptoms, and smoking were associated with significantly lower N-IBDQ scores. CONCLUSIONS SF-36 scores were not reduced compared to the general population sample. The presence of current symptoms, the use of corticosteroids, work status (not working), female gender, and smoking had a negative impact on HRQoL.
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Affiliation(s)
- Marte L Hoivik
- Department of Gastroenterology, Oslo University Hospital, Norway, Institute of Clinical Medicine, University of Oslo, Norway.
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Abstract
Ulcerative colitis negatively impacts patients' quality of life, but little is known about which aspects of patients' lives are affected, how patients' perceptions compare with patients with other chronic conditions, and how these perceptions compare with those of gastroenterologists. This review discusses two recent Internet surveys: (1) the Ulcerative Colitis: New Observations on Remission Management And Lifestyle (UC:NORMAL) and (2) the Crohn's and Colitis Foundation of America studies. The surveys revealed that the major impact ulcerative colitis has on patients includes frequent disease manifestations, a substantial psychological burden, and disruption to daily activities. This was more evident in patients with ulcerative colitis than those with migraine, asthma, or rheumatoid arthritis. Physicians' perceptions were considerably different from those of patients, as physicians believed that the disease had a lesser impact on patient quality of life. Furthermore, patients and physicians also identified nonadherence to prescribed medication as a major concern in the treatment of ulcerative colitis. Improved communication and education is needed to address nonadherence and poor health related quality of life in patients living with ulcerative colitis. The influence of Advanced Practice Registered Nurses on physicians, nurses, and patients may help improve adherence and long-term disease outcomes, including patients' health related quality of life. The nurse practitioner, working with both patients who have ulcerative colitis and the physicians who care for these patients, is uniquely placed to address these needs.
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Unfavourable outcome for women in a study of health-related quality of life, social factors and work disability in Crohn's disease. Eur J Gastroenterol Hepatol 2011; 23:671-9. [PMID: 21654323 DOI: 10.1097/meg.0b013e328346f622] [Citation(s) in RCA: 27] [Impact Index Per Article: 1.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/17/2022]
Abstract
OBJECTIVE The aim was to describe health-related quality of life (HRQL) and social factors, sickness and disability variables in a large population-based cohort of patients with Crohn's disease (CD). METHODS HRQL was measured with Short Form-36 in 497 adult patients with CD at three outpatient clinics. Comparisons were made with age-sex-matched background population and with ulcerative colitis (UC). Social factors, employment, sickness compensation and disability pension for CD were compared with national population registers. RESULTS CD had a greater negative effect on HRQL than did UC. This difference was more pronounced for women. Compared with background population, patients with CD had lower educational level, and had a two-fold rise in long-term sickness and disability pension rate. Women with CD had higher rates of sickness and disability than men with CD and were more often living single, though procreation was not affected. CONCLUSION This study characterized the burden of CD in a large population-based cohort. CD had higher impact on HRQL, compared with UC. Women with CD had worse outcome in subjective health status, but not in objective assessment of disease activity. Women also had higher rates of sickness, disability pension and single living. The mechanism underlying the sex-related inequalities in outcome for CD warrants further elucidation.
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Ciccocioppo R, Klersy C, Russo ML, Valli M, Boccaccio V, Imbesi V, Ardizzone S, Porro GB, Corazza GR. Validation of the Italian translation of the Inflammatory Bowel Disease Questionnaire. Dig Liver Dis 2011; 43:535-41. [PMID: 21315666 DOI: 10.1016/j.dld.2010.12.014] [Citation(s) in RCA: 37] [Impact Index Per Article: 2.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/21/2010] [Revised: 11/29/2010] [Accepted: 12/27/2010] [Indexed: 12/11/2022]
Abstract
BACKGROUND Health-related quality of life is an important measure of treatment outcome; its evaluation requires the use of internationally validated ad hoc questionnaires. The McMaster Inflammatory Bowel Disease Questionnaire (IBDQ) is the most used specific instrument. AIM To assess the validity and reliability of the Italian translation of the IBDQ. METHODS The IBDQ underwent forward and backward translation; 13 patients were enrolled for cognitive testing of the Italian version to increase clarity. For field testing, 113 patients (65 with Crohn's disease and 48 with ulcerative colitis) completed both the IBDQ and the generic instrument 36-item Short Form Health Survey scale (SF-36). RESULTS Data quality was optimal with high completeness and low floor and ceiling effect. Item internal consistency was satisfied for 100% of patients, while discriminant validity showed a few items with higher correlations with other scales. Cronbach's alpha coefficient was 0.96. Test-retest correlations indicated good reliability (Pearson R 0.81). Exploratory factor analysis indicated that the original grouping of the item was suboptimal. The score proved sensitive to disease activity, gender and quality of life as measured by the SF-36. CONCLUSIONS The Italian translation of the McMaster Inflammatory Bowel Disease Questionnaire sounds natural and is easy to understand. A field test gave results comparable to other international validations, supporting its use in cross-national surveys.
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Affiliation(s)
- Rachele Ciccocioppo
- Center for the Study and Cure of Inflammatory Bowel Disease, First Department of Medicine, IRCCS Policlinico San Matteo Foundation, University of Pavia, Pavia, Italy.
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Waljee AK, Higgins PDR, Waljee JF, Tujios SR, Saxena A, Brown LK, Chaudhary MN, Morris AM. Perceived and actual quality of life with ulcerative colitis: a comparison of medically and surgically treated patients. Am J Gastroenterol 2011; 106:794-9. [PMID: 21364547 PMCID: PMC4429766 DOI: 10.1038/ajg.2011.39] [Citation(s) in RCA: 20] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/11/2022]
Abstract
OBJECTIVES Patients with chronic ulcerative colitis (UC) often refuse colectomy, despite data indicating that it might improve quality of life. We hypothesized that perceived utility values are different for patients living with UC compared with UC patients after total proctocolectomy. Our aims were to compare the perceived utility assigned by UC patients with and without a colectomy to standardized chronic UC and post-colectomy scenarios, and to compare the utility of actual health states among groups. METHODS We surveyed patients in a tertiary referral center from three groups, including non-UC, UC patients without colectomy, and UC patients who were post-colectomy. We measured the Time-Trade-Off (TTO) utilities of subjects for standardized scenarios, describing moderate UC and a post-colectomy state. Among all UC patients (with and without colectomy), we measured TTO utility for their own health state. RESULTS Responses were obtained from 150 patients per group (n=450). The non-UC patients considered UC and colectomy scenarios equally (0.92), which was similar to UC patients without colectomy (0.90 and 0.91). Post-colectomy patients strongly preferred the colectomy scenario to the UC scenario (0.86 vs. 0.92, P<0.001). The median utility of UC patients without colectomy for their actual health state was higher than that of post-colectomy patients (0.96 and 0.92, P<0.05). Patients with more social support were more likely to have undergone colectomy compared with patients with little social support (odds ratio=1.20 per dependent/supporter). CONCLUSIONS Patients living with UC prefer their actual health state to a perceived UC scenario or a post-colectomy scenario. Patients who have undergone colectomy equate the quality of life in their actual state with that in a post-colectomy scenario, and prefer each to a perceived chronic UC state. Given the variety of preferences and the importance of social support, opportunities to interact with UC patients who have previously undergone colectomy could help patients living with UC and their physicians to navigate these complex choices.
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Affiliation(s)
- Akbar K. Waljee
- Division of Gastroenterology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI
| | - Peter DR Higgins
- Division of Gastroenterology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI
| | - Jennifer F. Waljee
- Division of Colon and Rectal Surgery, Department of Surgery, University of Michigan, Ann Arbor, MI
| | - Shannan R Tujios
- Division of Digestive and Liver Disease, Department of Internal Medicine, University of Texas Southwestern Medical Center, Dallas, TX
| | - Aditi Saxena
- Department of Internal Medicine, University of Michigan, Ann Arbor, MI
| | | | - Meghana N Chaudhary
- Division of Gastroenterology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI
| | - Arden M. Morris
- Division of Colon and Rectal Surgery, Department of Surgery, University of Michigan, Ann Arbor, MI
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Jäghult S, Saboonchi F, Johansson UB, Wredling R, Kapraali M. Identifying predictors of low health-related quality of life among patients with inflammatory bowel disease: comparison between Crohn's disease and ulcerative colitis with disease duration. J Clin Nurs 2011; 20:1578-87. [PMID: 21418363 DOI: 10.1111/j.1365-2702.2010.03614.x] [Citation(s) in RCA: 45] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/13/2023]
Abstract
AIM To identify predictors of low health-related quality of life among patients with inflammatory bowel disease and make a comparison between Crohn's disease and ulcerative colitis with disease duration. BACKGROUND Studies have shown that patients with inflammatory bowel disease rate their health-related quality of life lower, as compared with a general population. DESIGN Survey. METHODS In this study, 197 patients in remission were included and divided into a Crohn's disease group and an ulcerative colitis group. Each group was also divided into separate groups whether the patients had short disease duration or long disease duration. Generic instruments, combined with disease-specific questionnaires, were used for measuring health-related quality of life. RESULTS The analysis showed a non-significant effect for diagnosis, but a significant effect for disease duration showing that the patients with short disease duration had lower scores of health-related quality of life compared with patients with long disease duration. A significant interaction between diagnosis and disease duration was also revealed. CONCLUSION Patients with longer disease duration experienced a better health-related quality of life than patients with short disease duration. Patients with Crohn's disease and short disease duration have the lowest health-related quality of life and are in greatest need of education and support. RELEVANCE TO CLINICAL PRACTICE It is important to identify which patients' are in the greatest need of education and support.
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Affiliation(s)
- Susanna Jäghult
- Division of Medicine, Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden.
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Walter S, Hjortswang H, Holmgren K, Hallböök O. Association between bowel symptoms, symptom severity, and quality of life in Swedish patients with fecal incontinence. Scand J Gastroenterol 2011; 46:6-12. [PMID: 20735152 DOI: 10.3109/00365521.2010.513059] [Citation(s) in RCA: 12] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/04/2023]
Abstract
OBJECTIVES The association between abdominal symptoms, disease severity of fecal incontinence (FI), and quality of life (QoL) is not yet clear. We hypothesized that it would become clearer by prospective diary data. We also aimed to compare QoL of FI patients with ulcerative colitis (UC) patients in relapse and remission. MATERIAL AND METHODS Sixty-five consecutive female patients with FI recorded bowel symptoms prospectively on diary cards. QoL was evaluated with the disease specific short health scale questionnaire (SHS). Patients with UC in remission and relapse were used as a reference group regarding SHS. RESULTS FI patients had median 3.5 leakage episodes/week. In all, 48% of bowel movements were associated with urgency. Urgency was correlated to decreased QoL according to SHS domains: symptoms (Rho = 0.54, p = 0.0002), function (Rho = 0.48, p = 0.0008), and disease related worry (Rho = 0.32, p = 0.027). Abdominal pain and bloating, reported by nearly half of patients, correlated to deceased QoL but not to number of leakages. QoL of patients with FI compared to UC in active phase (n = 35) was similar. FI patients had decreased QoL compared to UC in remission (n = 94) in all dimensions of SHS: symptoms (p < 0.0001), function (p < 0.0001), disease related worry (p < 0.0001), and general well being (p = 0.03). CONCLUSION Urgency and irritable bowel syndrome (IBS)-like symptoms were associated with decreased QoL in FI. Therefore, IBS should be considered as an important confounding factor in FI QoL studies. QoL in patients with FI was considerably decreased, in a similar extent as in patients with UC in relapse.
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Affiliation(s)
- Susanna Walter
- Institution of Clinical and Experimental Medicine (IKE), Division of Gastroenterology, Linköping University, Sweden.
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Romberg-Camps MJL, Bol Y, Dagnelie PC, Hesselink-van de Kruijs MAM, Kester ADM, Engels LGJB, van Deursen C, Hameeteman WHA, Pierik M, Wolters F, Russel MGVM, Stockbrügger RW. Fatigue and health-related quality of life in inflammatory bowel disease: results from a population-based study in the Netherlands: the IBD-South Limburg cohort. Inflamm Bowel Dis 2010; 16:2137-47. [PMID: 20848468 DOI: 10.1002/ibd.21285] [Citation(s) in RCA: 182] [Impact Index Per Article: 12.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/12/2022]
Abstract
BACKGROUND The importance of fatigue in chronic disease has been increasingly recognized; however, little is known about fatigue in inflammatory bowel disease (IBD). The aim of the present study was to investigate the prevalence and severity of fatigue and the impact on health-related quality of life (HRQoL) in patients included in a population-based IBD cohort in the Netherlands. METHODS IBD patients, diagnosed between January 1st, 1991, and January 1st, 2003, were followed up for a median of 7.1 years. They completed a questionnaire, which included a disease activity score, the Multidimensional Fatigue Inventory (MFI-20), the Inflammatory Bowel Disease Questionnaire (IBDQ), and the Short Form health survey (SF-36). Hemoglobin levels were recorded. RESULTS Data were available in 304 Crohn's disease (CD), 368 ulcerative colitis (UC), and 35 indeterminate colitis (IC) patients. During quiescent disease, the prevalence of fatigue was nearly 40%. MFI-20 and HRQoL scores were significantly worse in IBD patients having active disease. In a multivariate analysis, disease activity was positively related with the level of fatigue in both CD and UC. In UC, anemia influenced the general fatigue score independently of disease activity. Disease activity as well as fatigue were independently associated with an impaired IBDQ. CONCLUSIONS In IBD, even in remission, fatigue is an important feature. Both in CD and in UC, fatigue determined HRQoL independently of disease activity or anemia. This implies that in IBD patients physicians need to be aware of fatigue in order to better understand its impact and to improve the HRQoL.
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Affiliation(s)
- M J L Romberg-Camps
- Department of Gastroenterology and Hepatology, Maastricht University Medical Center, the Netherlands.
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Jaghult S, Saboonchi F, Johansson UB, Wredling R, Kapraali M. Factor structures of the Swedish Version of the RFIPC: Investigating the Validity of Measurements of IBD Patients' Worries and Concerns. Gastroenterology Res 2010; 3:191-200. [PMID: 27956996 PMCID: PMC5139715 DOI: 10.4021/gr247w] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 10/27/2010] [Indexed: 12/22/2022] Open
Abstract
Background Worries and concerns of patients with IBD comprise an important negative factor in their HRQOL. The Rating Form of Inflammatory Bowel Disease Patient Concerns (RFIPC) was developed to describe the nature and degree of the worries and concerns of IBD patients. In the original version, the specific issues of worries are divided into four separate factors. These factors provide useful information about HRQOL and the kind of worries and concerns which are most important to the patient. However, the Swedish version of the RFIPC is often scored using a single sum score, implying that all the specific issues of worries stem from a single general worry factor. The aim of this study was to validate the factor structure of the Swedish version of the RFIPC. Methods A sample consisting of 195 patients with IBD filled out the RFIPC. Confirmatory factor analysis was performed to examine fit of three hypothesized models of factor structure. Spearman’s correlation and Mann-Whitney analysis were used to follow up the results. Results The single-factor model displayed poor fit indices. The four-factor model marked substantive improvement, but still remains inadequate. The final four-factor model permitting correlated error terms between some items displayed the most adequate fit. Conclusions The factorial structure of the RFIPC, as suggested in the original version, was able to be replicated with a slight modification in the Swedish version. The separate factors identified in this structure provide more detailed information about the worries and concerns of IBD patients as these components of worries are different related to HRQOL and general health.
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Affiliation(s)
- Susanna Jaghult
- Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Medicine, SE-182 88 Stockholm, Sweden
| | - Fredrik Saboonchi
- Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Medicine, SE-182 88 Stockholm, Sweden; Sophiahemmet University College, Box 5605, SE-114 86 Stockholm, Sweden
| | - Unn-Britt Johansson
- Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Medicine, SE-182 88 Stockholm, Sweden; Sophiahemmet University College, Box 5605, SE-114 86 Stockholm, Sweden
| | - Regina Wredling
- Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Medicine, SE-182 88 Stockholm, Sweden
| | - Marjo Kapraali
- Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Medicine, SE-182 88 Stockholm, Sweden
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Zhou Y, Ren W, Irvine EJ, Yang D. Assessing health-related quality of life in patients with inflammatory bowel disease in Zhejiang, China. J Clin Nurs 2010; 19:79-88. [PMID: 20500246 DOI: 10.1111/j.1365-2702.2009.03020.x] [Citation(s) in RCA: 22] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/14/2022]
Abstract
AIMS The aim of this study was to assess health-related quality of life in patients with inflammatory bowel disease in Zhejiang, Mainland China. BACKGROUND The incidence of inflammatory bowel disease in China is believed to be low but has been increasing in the past decade. The quality of life of Chinese patients with inflammatory bowel disease is unknown. DESIGN A cross-sectional study. METHODS The study was conducted in 92 patients with inflammatory bowel disease in Zhejiang, China, 52 with ulcerative colitis and 40 with Crohn's disease. Health-related quality of life was measured by the Chinese version of the Inflammatory Bowel Disease Questionnaire and Short Form-36, respectively. Disease activity was assessed by the Walmsley and Harvey-Bradshaw simple indices for ulcerative colitis and Crohn's disease, respectively. Demographic and clinical variables were also recorded. Short Form-36 data from the study sample were compared with a reference population of 1688 Chinese people residing in Hangzhou, Zhejiang, China. RESULTS No significant health-related quality of life differences were found between patients with ulcerative colitis and Crohn's disease (p > 0.05). Pooled data showed that inflammatory bowel disease patients with active disease had significantly lower scores for all eight dimensions of Short Form-36 compared to those in remission (p < 0.01); those with active disease scored significantly lower than population norms in all dimensions of Short Form-36 except mental health (p < 0.05); whereas those in remission scored significantly lower than population norms in role physical (p < 0.01) and general health dimensions (p < 0.05). The regression analyses identified only disease activity index and employment status to explain variations in health-related quality of life (p < 0.01). CONCLUSIONS Inflammatory bowel disease similarly impairs health-related quality of life in patients with both ulcerative colitis and Crohn's disease. RELEVANCE TO CLINICAL PRACTICE The results suggest that any interventions that produce a stable clinical remission, whether medical or surgical, allowing patients to return to their usual work position can decrease the disease impact on their daily lives.
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Affiliation(s)
- Yunxian Zhou
- Department of Nursing, The Second Affiliated Hospital, College of Medicine, Zhejiang University, Hangzhou, Zhejiang, China
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Stjernman H, Tysk C, Almer S, Ström M, Hjortswang H. Worries and concerns in a large unselected cohort of patients with Crohn's disease. Scand J Gastroenterol 2010; 45:696-706. [PMID: 20334474 DOI: 10.3109/00365521003734141] [Citation(s) in RCA: 70] [Impact Index Per Article: 4.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/04/2023]
Abstract
OBJECTIVE Disease-related worries constitute an important dimension of patient-reported perception of health status in inflammatory bowel disease (IBD). The Rating Form of IBD Patient Concerns (RFIPC) questionnaire is purported to measure IBD-related worries. This study evaluated the psychometric properties of a Swedish translation of RFIPC in an unselected population of Crohn's disease (CD) patients. The degree and nature of the worries were characterized and predictive factors for outcome of RFIPC and underlying dimensions were identified. MATERIAL AND METHODS The RFIPC was completed by 447 CD patients in conjunction with regular visits. A physician global assessment of disease activity and four other health-related quality of life (HRQL) questionnaires were used for construct validity. Reliability and responsiveness were evaluated with follow-up visits. Underlying dimension and predictive factors were identified with factor analysis and multiple linear regression analysis. RESULTS Test-retest reliability was 0.90, correlation with corresponding HRQL measures 0.60-0.80 and responsiveness ratio 0.84. Median RFIPC sum score was lower than in previous studies. Top three concerns were ostomy, energy level and bowel control. Four dimensions were identified in descending order of concern: disease-related complications, daily-life achievements, intimacy, and stigmatization. Predictors of RFIPC score were disease activity, gender, and BMI (p < 0.001-0.008). CONCLUSIONS The Swedish version of RFIPC exhibited an adequate psychometric performance in CD patients, but was less sensitive to change in disease activity. The patients were more concerned about complications and achievement than intimacy and stigmatization. The strongest predictors of more worry were active disease, female gender and higher BMI.
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Affiliation(s)
- Henrik Stjernman
- Division of Gastroenterology, Department of Medicine, County Hospital Ryhov, Jönköping, Sweden.
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Bastida G, Nos P, Aguas M, Beltrán B, Iborra M, Ortiz V, Garrigues V, Estevan R, Ponce J. The effects of thiopurine therapy on health-related quality of life in Inflammatory Bowel Disease patients. BMC Gastroenterol 2010; 10:26. [PMID: 20196836 PMCID: PMC2846867 DOI: 10.1186/1471-230x-10-26] [Citation(s) in RCA: 19] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/05/2009] [Accepted: 03/02/2010] [Indexed: 01/02/2023] Open
Abstract
Background The effect of thiopurine immunomodulators on health-related quality of life (HRQoL) in patients with inflammatory bowel disease (IBD) has been controversial. The aims were to evaluate the HRQoL in patients with IBD treated with thiopurines and assess the short- and long-term impacts of the treatment on HRQoL. Methods Ninety-two consecutive patients who started treatment with thiopurines were prospectively included. Evaluation of HRQoL was performed at months 0, 6, and 12 using two questionnaires, the Short-Form Health Survey (SF-36) and the Inflammatory Bowel Disease Questionnaire (IBDQ). Results Baseline score of IBDQ was 4,6, range (2,31-6,84), with an impairment of the five dimensions of HRQoL compared with inactive patients. Results obtained in 8 dimensions of SF-36 showed worse HRQoL than Spanish general population. At 6 months patients had a significant improvement in overall IBDQ score -5,8 (1,58 -6,97)- and also in all IBDQ dimensions. All the 8 dimensions of SF-36 obtained a significant improvement. At twelve months score of IBDQ was 6,1, range (2,7-6,98), with improvement in all dimensions compared with baseline and 6 months. SF-36 showed a similar significant improvement in all subscales. Conclusions Thiopurine immunomodulators alone or with other treatments have a positive and long lasting impact on HRQoL of IBD patients.
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Affiliation(s)
- Guillermo Bastida
- Gastroenterology Unit, La Fe Hospital, Valencia, 21 Campanar Avenue, Valencia 46009, Spain.
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Hoivik ML, Bernklev T, Moum B. Need for standardization in population-based quality of life studies: a review of the current literature. Inflamm Bowel Dis 2010; 16:525-36. [PMID: 19637337 DOI: 10.1002/ibd.21032] [Citation(s) in RCA: 12] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/23/2022]
Abstract
In this systematic review we focus on the current use of and knowledge on health related quality of life in unselected, population-based IBD cohorts. We made a systematic literature search and included for comprehensive review papers that described a population-based cohort and that used validated HRQoL instruments. We show that even studies defined by the authors as population-based do not always meet the criteria set for being population-based. The heterogeneity of the study populations we have reviewed emphasizes that "population-based" must be defined very meticulously and that study populations need to be scrutinized with regard to all characteristics of the cohort before one can compare their results. Different definitions of study populations as population-based affect outcomes. We also show that use of the same HRQoL questionnaires does not guarantee comparable results as there are several different versions of the questionnaires, the different translations are not always comparable and at last there are several methods of computing and presenting the data. Detailed accumulation of knowledge and thorough meta analyses is therefore difficult hence we find it necessary to raise a discussion on the need of standardization in this field of research and we make some simple recommendations on factors we find important.
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Affiliation(s)
- Marte Lie Hoivik
- Section of Gastroenterology, Medical Department, Oslo University Hospital, Aker, Norway.
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Iacucci M, de Silva S, Ghosh S. Mesalazine in inflammatory bowel disease: a trendy topic once again? CANADIAN JOURNAL OF GASTROENTEROLOGY = JOURNAL CANADIEN DE GASTROENTEROLOGIE 2010; 24:127-33. [PMID: 20151072 PMCID: PMC2852235 DOI: 10.1155/2010/586092] [Citation(s) in RCA: 69] [Impact Index Per Article: 4.6] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/20/2009] [Accepted: 03/21/2009] [Indexed: 12/19/2022]
Abstract
5-aminosalicylic acid (5-ASA) preparations (eg, mesalazine, mesalamine) are well-established preparations used in the management of inflammatory bowel disease. These drugs are most useful for the treatment of mild to moderate flares of ulcerative colitis and, especially, for maintenance of remission. Although most gastroenterologists are very familiar with these drugs, the interest in these drugs has undergone a resurgence, with new preparations offering convenience and high dosage, while preserving their customary safety. New dosage regimens are likely to become standard practice in the near future. There is also considerable interest in chemoprevention of colorectal cancer in the context of inflammatory bowel disease, and the role of long-term maintenance therapy with 5-ASAs in achieving such chemoprevention. A mechanism of action for such chemoprevention has been provided by the agonism of the peroxisome proliferator-activated receptor-gamma by 5-ASA, which unifies its efficacy as an anti-inflammatory and chemopreventive agent. In the future, even more effective agents based on 5-ASA are expected, based on more powerful agonism of peroxisome proliferator-activated receptor-gamma; 5-ASA preparations have become 'trendy' again.
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Affiliation(s)
- Marietta Iacucci
- Gastrointestinal Unit, Hammersmith Hospital, Imperial College Healthcare NHS Trust, London, United Kingdom
| | - Shanika de Silva
- Division of Gastroenterology, University of Calgary, Calgary, Alberta
| | - Subrata Ghosh
- Division of Gastroenterology, University of Calgary, Calgary, Alberta
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Stjernman H, Tysk C, Almer S, Ström M, Hjortswang H. Factors predicting the outcome of disease activity assessment in Crohn's disease. Inflamm Bowel Dis 2009; 15:1859-66. [PMID: 19575357 DOI: 10.1002/ibd.20975] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/12/2009] [Accepted: 03/24/2009] [Indexed: 12/30/2022]
Abstract
BACKGROUND The Crohn's Disease Activity Index (CDAI) has become the gold standard for assessment of disease activity in CD. This study investigated the relationship between CDAI and the physicians' global assessment of disease activity (PGA) and whether different demographic and disease-related factors predict the outcome. METHODS Multiple linear regression analysis was used to investigate the relationship between CDAI and PGA obtained from 405 CD patients. Predictors of the CDAI and the PGA outcome were identified. RESULTS The correlation between CDAI and PGA was moderate. In patients with CDAI >150, 72% of the total score were derived from the subjective variables. The regression coefficients were not significant for 3 of the CDAI variables. In regression analysis, C-reactive protein (CRP), stenosis, smoking, bowel resection, concomitant disease, and gender predicted the CDAI outcome. The PGA outcome was predicted only by CRP, stenosis, and fistula. CONCLUSIONS The correlation between CDAI and PGA was moderate and the subjective variables had a high impact on CDAI. Factors with no obvious relation to inflammatory activity predicted the outcome of CDAI, but not PGA. In trials of CD therapies, separation of subjective (symptoms, well-being) from objective (endoscopy, inflammatory markers) variables should be considered in the assessment of disease activity.
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Affiliation(s)
- Henrik Stjernman
- Division of Gastroenterology, Department of Medicine, County Hospital Ryhov, Jönköping, Sweden.
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Impact of demographic factors, medication and symptoms on disease-specific quality of life in inflammatory bowel disease. Qual Life Res 2009. [PMID: 19629750 DOI: 10.1007/+s11136-009-9514-y] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 09/29/2022]
Abstract
OBJECTIVES To investigate the relation of demographic factors, medication and symptoms to health-related quality of life in patients with inflammatory bowel disease, and to identify patients in need of special support. METHODS A questionnaire packet comprising the Inflammatory Bowel Disease Questionnaire (IBDQ) and the European Federation of Crohn's and Colitis Associations' (EFCCA) Survey Questionnaire was sent to 3,852 adult members of the Crohn and Colitis Association of Finland. IBDQ was used for measuring health-related quality of life (HRQoL), and the EFCCA questionnaire gave information about demographics, symptoms and medication. RESULTS Altogether 2,386 questionnaires (62%) were available for analysis. Patients reporting symptoms affecting leisure activities or work had significantly lower total IBDQ scores (indicating worse HRQoL) than patients with less disturbing symptoms. Satisfaction with current therapy, female gender and age affected the scores. Subjects who had undergone surgery scored lower than those who had not. Patients currently receiving corticosteroids and newly diagnosed patients had lower scores than other patients. CONCLUSIONS In everyday practice, paying attention to and reducing patients' symptoms and their impact on daily life is important when aiming at improving HRQoL. Special attention should be given to patients who have undergone surgery, and to newly diagnosed patients.
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Haapamäki J, Turunen U, Roine RP, Färkkilä MA, Arkkila PET. Impact of demographic factors, medication and symptoms on disease-specific quality of life in inflammatory bowel disease. Qual Life Res 2009; 18:961-9. [PMID: 19629750 DOI: 10.1007/s11136-009-9514-y] [Citation(s) in RCA: 39] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/25/2008] [Accepted: 07/10/2009] [Indexed: 12/20/2022]
Affiliation(s)
- Johanna Haapamäki
- Department of Medicine, Division of Gastroenterology, Helsinki University Central Hospital, P.O. Box 340, 00029, HUS, Helsinki, Finland.
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Rubin DT, Siegel CA, Kane SV, Binion DG, Panaccione R, Dubinsky MC, Loftus EV, Hopper J. Impact of ulcerative colitis from patients' and physicians' perspectives: Results from the UC: NORMAL survey. Inflamm Bowel Dis 2009; 15:581-8. [PMID: 19067414 DOI: 10.1002/ibd.20793] [Citation(s) in RCA: 50] [Impact Index Per Article: 3.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/14/2022]
Abstract
BACKGROUND Two national internet surveys were conducted to understand how patients perceive the impact of ulcerative colitis (UC) relative to gastroenterologists. METHODS In total, 451 patients with UC (20% mild, 63% moderate, 13% severe, 4% unsure [patient self-assessment]) were recruited for one survey and 300 gastroenterologists (not associated with the patients) were recruited for the other survey. RESULTS Patients reported, on average, 8 (self-defined) flares per year; this was more than the number anticipated by gastroenterologists. Sixty-two percent of patients with UC reported that their disease made it difficult to lead a normal life, compared with gastroenterologists' estimations of 36%. Only 42% of patients believed that being in remission could mean living without symptoms. Both patients and gastroenterologists reported that it is difficult for patients to take medication as prescribed every day (42% and 90%) and that managing UC medication is a struggle for patients (49% and 41%). Forty-six percent of patients admitted nonadherence to their therapy over the previous week, while gastroenterologists believed that 41% of their patients were not adherent. CONCLUSIONS These surveys identified disparities between patients' and gastroenterologists' perceptions of the impact of UC on patients' lives. The results suggest that more patients than gastroenterologists estimated chose to adapt their lives to accommodate UC rather than act to optimize therapy and adherence. Improved communication between patients and gastroenterologists, as well as better management strategies and education are necessary.
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Affiliation(s)
- David T Rubin
- Section of Gastroenterology, Department of Medicine, University of Chicago Medical Center, Chicago, Illinois, USA.
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Hawthorne AB, Rubin G, Ghosh S. Review article: medication non-adherence in ulcerative colitis--strategies to improve adherence with mesalazine and other maintenance therapies. Aliment Pharmacol Ther 2008; 27:1157-66. [PMID: 18384664 DOI: 10.1111/j.1365-2036.2008.03698.x] [Citation(s) in RCA: 84] [Impact Index Per Article: 4.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/06/2023]
Abstract
BACKGROUND Significant number of patients with ulcerative colitis (UC) fail to comply with treatment. AIMS To review issues surrounding medication non-adherence in inflammatory bowel disease (IBD), including the clinical and health service implications in the UK, and discuss strategies for optimizing medication adherence. METHODS Articles cited were identified via a PubMed search, utilizing the words IBD, adherence, compliance, medication and UC. RESULTS Medication non-adherence is multifactorial involving factors other than dosing frequency. Male gender (OR: 2.06), new patient status (OR: 2.14), work and travel pressures (OR: 4.9) and shorter disease duration (OR: 2.1), among others are proven predictors of non-adherence in UC. These indicators can identify 'at-risk' patients and allow an individually tailored treatment approach to be introduced that optimizes medication adherence. A collaborative relationship between physician and patient is important; several strategies for improving adherence have been proven effective including open dialogue that takes into consideration the patient's health beliefs and concerns, providing educational (e.g. verbal/written information, self-management programmes) and behavioural interventions (e.g. calendar blister packs, cues/reminders). CONCLUSIONS Educational and behavioural interventions tailored to individual patients can optimize medication adherence. Additional studies combining educational and behavioural interventions may provide further strategies for improving medication adherence rates in UC.
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Affiliation(s)
- A B Hawthorne
- Department of Medicine, University Hospital of Wales, Heath Park, Cardiff, UK.
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Abstract
Quality of life (QoL) is vitally important to patients with chronic illnesses such as ulcerative colitis (UC) and has been assessed in observational, cross-sectional, and cohort studies. However, relatively few clinical trials have evaluated the QoL of patients with UC. Recently, greater availability of the necessary tools has facilitated the undertaking of studies showing that QoL of patients with UC is reduced significantly compared with that of the general population. Studies using disease-specific instruments have identified disease severity as the strongest predictor of QoL, with other disease-related predictors including type of medical or surgical treatment and the efficacy, tolerability, and acceptability to patients of particular types of medical or surgical treatments. Other factors, such as comorbid medical or psychosocial problems and adherence to treatment, also affect QoL. Combined use of generic and disease-specific instruments in clinical trials can ensure that all clinically relevant unexpected events (generic instrument) and important improvement or deterioration (disease-specific instrument) are captured. For accurate outcomes assessment, the use of comprehensively validated instruments is critical. The need for the development and evaluation of new instruments will be determined by the mechanisms and targets of novel therapies. Ultimately, QoL assessment of effective therapies will play a strong role in pharmacoeconomic evaluations, providing health policy makers with the evidence to support the treatments that can most effectively normalize QoL through complete symptom resolution, minimal side effects, and convenient administration.
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Affiliation(s)
- E Jan Irvine
- University of Toronto and Division of Gastroenterology, St. Michael's Hospital, Toronto, Ontario, Canada.
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Biancone L, Michetti P, Travis S, Escher JC, Moser G, Forbes A, Hoffmann JC, Dignass A, Gionchetti P, Jantschek G, Kiesslich R, Kolacek S, Mitchell R, Panes J, Soderholm J, Vucelic B, Stange E. European evidence-based Consensus on the management of ulcerative colitis: Special situations. J Crohns Colitis 2008; 2:63-92. [PMID: 21172196 DOI: 10.1016/j.crohns.2007.12.001] [Citation(s) in RCA: 148] [Impact Index Per Article: 8.7] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/30/2007] [Accepted: 12/30/2007] [Indexed: 02/08/2023]
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