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Carlisle EM, Sundland R, Shakhsheer B, Arnold M, Lee J, Mills J, Martin K, Mueller C, Gow K. Ethics of Transition of Care of Pediatric Surgical Patients to Adult Providers. J Pediatr Surg 2025; 60:162228. [PMID: 39919340 DOI: 10.1016/j.jpedsurg.2025.162228] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/24/2025] [Accepted: 01/25/2025] [Indexed: 02/09/2025]
Abstract
Pediatric surgeons have significantly improved survival rates for children with complex conditions, transforming many previously terminal cases into long-term survivorship. What was once a few years of follow-up has now become decades, leading to patients living well into adulthood, facing new challenges that often fall outside the traditional pediatric care zone. This creates an ethical dilemma: balancing beneficence and non-maleficence while ensuring equity in caring for new patients who require our expertise. The process of transitioning pediatric surgical patients to adult care introduces further ethical challenges, especially when it comes to upholding patient autonomy and ensuring assent during the transition process. We will review best practices and ethical frameworks for transitioning pediatric surgical patients to adult care, ensuring that these patients continue to receive optimal care while respecting their autonomy and ability to make informed decisions about their health.
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Affiliation(s)
- Erica M Carlisle
- Department of Surgery, University of Iowa, Iowa City, IA 52242, USA
| | - Rachael Sundland
- Department of Surgery, Maimonides Medical Center, Brooklyn, NY 11219, USA
| | - Baddr Shakhsheer
- Department of Surgery, University of Chicago, Chicago, IL 60637, USA
| | - Meghan Arnold
- Department of Surgery, University of Michigan, Ann Arbor, MI 48109, USA
| | - Jieun Lee
- Department of Surgery, Guthrie Clinic, Sayre, PA 18840, USA
| | - Jessica Mills
- Division of Pediatric General & Thoracic Surgery, Dalhousie University, Halifax, NS B3H 4R2, USA
| | - Kathryn Martin
- Department of Surgery, Westchester Medical Center, Valhalla, NY 10595, USA
| | - Claudia Mueller
- Division of Pediatric Surgery, Stanford University School of Medicine, Palo Alta, CA 94305, USA
| | - Kenneth Gow
- Division of Pediatric Surgery, Stony Brook Children's Hospital, 101 Nicholls Road, Stony Brook, NY 11794, USA.
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Vinayan KP, Saini AG, Jyotsna AS, Singh G, Aneja S, Jayalakshmi S, Kanhere S, Sylaja PN, Panigrahi D, Verma AK. Transition of Care for Pediatric Neurologic Disorders - Are We There Yet? Ann Indian Acad Neurol 2025; 28:26-31. [PMID: 39834047 DOI: 10.4103/aian.aian_521_24] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/01/2024] [Accepted: 11/20/2024] [Indexed: 01/22/2025] Open
Affiliation(s)
| | - Arushi Gahlot Saini
- Department of Pediatrics, Advanced Pediatric Center Postgraduate Institute of Medical Education and Research, Chandigarh, India
| | | | - Gagandeep Singh
- Department of Neurology, Dayanand Medical College, Ludhiana, Punjab, India
| | - Satinder Aneja
- Department of Pediatrics, Lady Hardinge Medical College and Associated Kalawati Saran Children's Hospital, New Delhi, India
| | - Sita Jayalakshmi
- Department of Neurology, Krishna Institute of Medical Sciences, Secunderabad, Telangana, India
| | - Sujata Kanhere
- Department of Paediatrics, K.J. Somaiya Medical College, Hospital and Research Centre, Mumbai, Maharashtra, India
| | - P N Sylaja
- Department of Neurology, Comprehensive Stroke Care Program, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, Kerala, India
| | - Debasis Panigrahi
- Department of Pediatrics, Ankura Hospital for Mother and Child, Bhubaneshwar, Odisha, India
| | - Anoop Kumar Verma
- Department of Pediatrics, Swapnil Nursing Home, Raipur, Chattishgarh, India
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Poamaneagra SC, Galos F, Tataranu E, Mihai C, Anton C, Andronic CM, Gilca-Blanariu GE, Balan GG, Timofte O, Anchidin-Norocel L, Rosu OM, Diaconescu S. Transition Readiness in Pediatric Chronic Digestive Diseases: A Regional Perspective from North-Eastern Romania. MEDICINA (KAUNAS, LITHUANIA) 2024; 60:2104. [PMID: 39768983 PMCID: PMC11678283 DOI: 10.3390/medicina60122104] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 11/21/2024] [Revised: 12/13/2024] [Accepted: 12/20/2024] [Indexed: 01/11/2025]
Abstract
Background: The transition from the pediatric to the adult healthcare system is a challenging process involving adolescents, parents, and pediatric and adult specialists. For a successful approach for an organized transition program, we must assess the level of training of adolescents facing transition. Methods: We applied a clinic-based questionnaire measuring perceived self-management skills, adherence to health-related tasks, medication knowledge, and social adjustment to pediatric patients with chronic digestive diseases from North-East Romanian medical units, including a tertiary center and private practice offices. Results: There were 124 participants; 73.38% from rural areas, 26.62% from urban areas; 59.67% were females, and 40.33% were males; 91.93% attended school and 73.4% declared wanting to pursue university classes after turning 18. Adolescents from urban areas showed better medication managerial (p < 0.01) and tracking healthcare change skills. Significant correlations were found between medication and appointment making, tracking health dynamics, and communication skills. Other correlations were found between communication skills and medication knowledge, appointments management, and tracking healthcare dynamics. All the investigated domains were positively correlated with the overall scores, highlighting the potential impact of active targeted interventions during transition. Conclusions: We identified significant areas to address and potentially influence during an organized transition program such as communication skills and knowledge regarding the chronic disease and the followed medication.
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Affiliation(s)
- Silvia Cristina Poamaneagra
- Doctoral School, George Emil Palade University of Medicine, Pharmacy, Science and Technology, 540139 Targu Mures, Romania; (S.C.P.); (O.M.R.)
| | - Felicia Galos
- Marie Curie Emergency Childrens Hospital, 077120 Bucharest, Romania
- Faculty of Medicine, Carol Davila University of Medicine and Pharmacy, 050474 Bucharest, Romania
| | - Elena Tataranu
- Clinical Department of Pediatrics, Sf. Ioan cel Nou, Emergency Hospital, 720224 Suceava, Romania
| | - Catalina Mihai
- Faculty of Medicine, “Grigore T. Popa” University of Medicine and Pharmacy, 700115 Iasi, Romania; (C.M.); (C.A.); (C.-M.A.); (G.-E.G.-B.); (G.G.B.); (O.T.)
- Department of Gastroenterology and Hepatology, “St. Spiridon” Emergency Hospital, 700111 Iasi, Romania
| | - Carmen Anton
- Faculty of Medicine, “Grigore T. Popa” University of Medicine and Pharmacy, 700115 Iasi, Romania; (C.M.); (C.A.); (C.-M.A.); (G.-E.G.-B.); (G.G.B.); (O.T.)
- Department of Gastroenterology and Hepatology, “St. Spiridon” Emergency Hospital, 700111 Iasi, Romania
| | - Cristiana-Mihaela Andronic
- Faculty of Medicine, “Grigore T. Popa” University of Medicine and Pharmacy, 700115 Iasi, Romania; (C.M.); (C.A.); (C.-M.A.); (G.-E.G.-B.); (G.G.B.); (O.T.)
- Department of Gastroenterology and Hepatology, “St. Spiridon” Emergency Hospital, 700111 Iasi, Romania
| | - Georgiana-Emmanuela Gilca-Blanariu
- Faculty of Medicine, “Grigore T. Popa” University of Medicine and Pharmacy, 700115 Iasi, Romania; (C.M.); (C.A.); (C.-M.A.); (G.-E.G.-B.); (G.G.B.); (O.T.)
- Department of Gastroenterology and Hepatology, “St. Spiridon” Emergency Hospital, 700111 Iasi, Romania
| | - Gheorghe G. Balan
- Faculty of Medicine, “Grigore T. Popa” University of Medicine and Pharmacy, 700115 Iasi, Romania; (C.M.); (C.A.); (C.-M.A.); (G.-E.G.-B.); (G.G.B.); (O.T.)
- Department of Gastroenterology and Hepatology, “St. Spiridon” Emergency Hospital, 700111 Iasi, Romania
| | - Oana Timofte
- Faculty of Medicine, “Grigore T. Popa” University of Medicine and Pharmacy, 700115 Iasi, Romania; (C.M.); (C.A.); (C.-M.A.); (G.-E.G.-B.); (G.G.B.); (O.T.)
- Department of Gastroenterology and Hepatology, “St. Spiridon” Emergency Hospital, 700111 Iasi, Romania
| | - Liliana Anchidin-Norocel
- Faculty of Medicine and Biological Sciences, Stefan cel Mare University of Suceava, 720229 Suceava, Romania;
| | - Oana Maria Rosu
- Doctoral School, George Emil Palade University of Medicine, Pharmacy, Science and Technology, 540139 Targu Mures, Romania; (S.C.P.); (O.M.R.)
| | - Smaranda Diaconescu
- Faculty of Medicine, “Titu Maiorescu” University of Medicine, 050474 Bucharest, Romania;
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Mochizuki Y, Ogata K, Kumada S, Imai T, Akahoshi C, Hineno A, Kitahara R, Yabe I, Mochizuki H. [Initiatives for supporting the health care transition in various regions: activities of transitional care support centers]. Rinsho Shinkeigaku 2024; 64:861-865. [PMID: 39551511 DOI: 10.5692/clinicalneurol.cn-002033] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/19/2024]
Abstract
The Japanese Society of Neurology's Special Committee on Measures for Transition from Pediatric to Adult Health Care held a workshop to discuss the activities of the transitional care support centers (TCSCs). The following points were addressed: (1) from Kanagawa Prefecture, the activities of the TCSC, which is set up alongside the Intractable Disease Consultation Support Center and the Intractable Disease Information Coordination Center, separated from medical institutions, and the efforts addressing cases of difficult transitions and consultations where patients cannot transition from specific pediatric chronic diseases to designated intractable diseases; (2) from Nagano Prefecture, the supporting the health care transition undertaken by the neurologist as intractable disease medical coordinator, and (3) the efforts of the transitional health care support coordinator at the TCSC established at the university hospital in collaboration with the Nagano Children's Hospital and the government. For the creation of a seamless support system, we hope that the pioneering activities reported at this time will spread nationwide.
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Affiliation(s)
- Yoko Mochizuki
- Department of Neurology, Tokyo Metropolitan Kita Medical and Rehabilitation Center for the Disabled
| | - Katsuhisa Ogata
- Department of Neurology/Institute of Clinical Research, National Hospital Organization Higashisaitama National Hospital
| | - Satoko Kumada
- Department of Neuropediatrics, Tokyo Metropolitan Neurological Hospital
| | - Tomihiro Imai
- Kanagawa Transitional Care Support Center
- Department of Neurology, National Hospital Organization Hakone Hospital
| | | | - Akiyo Hineno
- Shinshu Medical Care Collaboration Center, Shinshu University Hospital
- Department of Medicine (Neurology & Rheumatology), Shinshu University School of Medicine
| | - Rie Kitahara
- Nagano Prefecture Adolescents and Young Adults Health Care Transitions Support Center
| | - Ichiro Yabe
- Department of Neurology, Faculty of Medicine and Graduate School of Medicine, Hokkaido University
| | - Hideki Mochizuki
- Department of Neurology, Osaka University Graduate School of Medicine
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Peterson JK, Clarke S, Gelb BD, Kasparian NA, Kazazian V, Pieciak K, Pike NA, Setty SP, Uveges MK, Rudd NA. Trisomy 21 and Congenital Heart Disease: Impact on Health and Functional Outcomes From Birth Through Adolescence: A Scientific Statement From the American Heart Association. J Am Heart Assoc 2024; 13:e036214. [PMID: 39263820 DOI: 10.1161/jaha.124.036214] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/24/2024] [Accepted: 04/24/2024] [Indexed: 09/13/2024]
Abstract
Due to improvements in recognition and management of their multisystem disease, the long-term survival of infants, children, and adolescents with trisomy 21 and congenital heart disease now matches children with congenital heart disease and no genetic condition in many scenarios. Although this improved survival is a triumph, individuals with trisomy 21 and congenital heart disease have unique and complex care needs in the domains of physical, developmental, and psychosocial health, which affect functional status and quality of life. Pulmonary hypertension and single ventricle heart disease are 2 known cardiovascular conditions that reduce life expectancy in individuals with trisomy 21. Multisystem involvement with respiratory, endocrine, gastrointestinal, hematological, neurological, and sensory systems can interact with cardiovascular health concerns to amplify adverse effects. Neurodevelopmental, psychological, and functional challenges can also affect quality of life. A highly coordinated interdisciplinary care team model, or medical home, can help address these complex and interactive conditions from infancy through the transition to adult care settings. The purpose of this Scientific Statement is to identify ongoing cardiovascular and multisystem, developmental, and psychosocial health concerns for children with trisomy 21 and congenital heart disease from birth through adolescence and to provide a framework for monitoring and management to optimize quality of life and functional status.
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Healy EW, Piracha NZ. Evaluating the transition of adolescents and young adults with palliative care needs from pediatric to adult care. HEALTH CARE TRANSITIONS 2024; 2:100072. [PMID: 39712629 PMCID: PMC11657163 DOI: 10.1016/j.hctj.2024.100072] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Subscribe] [Scholar Register] [Received: 03/20/2024] [Revised: 09/09/2024] [Accepted: 09/12/2024] [Indexed: 12/24/2024]
Abstract
Background The transition from pediatric to adult healthcare poses significant challenges for adolescents and young adults (AYA), especially those with chronic conditions, yet most children receive inadequate transition preparation. Research on the transition for patients receiving palliative care services is particularly limited. We sought to address this gap in the literature. Methods Young adults aged 18 to 35 years who transitioned from the pediatric setting and received adult palliative care services at an urban academic medical center between the dates of February 1st, 2020 and July 1st, 2022 were identified retrospectively via electronic medical record. Chart review was used to investigate outcomes of interest, including use of pediatric palliative care services and timing of care conversations. Results Only 23 % of patients interfaced with pediatric palliative care, despite all having childhood diagnoses. Pediatric palliative care exposure was associated with a significantly earlier median age of first adult palliative care encounter (19.63 versus 25.06, p = <0.001). Goals of care discussions, code status conversations, and healthcare proxy documentation occurred earlier if pediatric palliative care was involved (18.9 years versus 25.7 years, p < 0.001; 20.9 years versus 30.0 years, p < 0.001; 20.7 versus 28.9, p < 0.001). Conclusions Pediatric palliative care services were underutilized in AYA patients, but when used, were associated with earlier adult palliative care encounters, goals of care discussions, code status decisions, and health care proxy identification.
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Affiliation(s)
- Emma W. Healy
- Columbia University Vagelos College of Physicians and Surgeons, 630 W 168th St, New York, NY 10032, United States
| | - Natasha Z. Piracha
- Pediatric Palliative Care, Division of Critical Care and Hospital Medicine, Department of Pediatrics, Columbia University Vagelos College of Physicians and Surgeons and New York-Presbyterian, 630 W 168th St, New York, NY 10032, United States
- Adult Palliative Care Service, Department of Medicine, Columbia University Vagelos College of Physicians and Surgeons and New York-Presbyterian, 630 W 168th St, New York, NY 10032, United States
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Morandi A, Umano GR, Vania A, Gugliemi V, Muscogiuri G, Maffeis C, Busetto L, Buscemi S, Cherubini V, Barazzoni R, Manco M. Optimising healthcare transition of adolescents and young adults to adult care: a perspective statement of the Italian Society of Obesity. Eat Weight Disord 2024; 29:51. [PMID: 39097845 PMCID: PMC11298504 DOI: 10.1007/s40519-024-01678-0] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/16/2024] [Accepted: 07/10/2024] [Indexed: 08/05/2024] Open
Abstract
The transition to adult health care (HCT, Health Care Transition), is the purposeful, planned movement of patients from paediatric to adult services. For the adolescent living with obesity (ALwO), the HCT represents a crucial window for effective intervention that can help improve body weight, adiposopathy, and metabolic complications. Nevertheless, no transition guidelines, models, and tools have been developed for these patients. The present statement of the Italian Society of Obesity examines the critical transition of ALwO from paediatric to adult healthcare. It synthesises current knowledge and identifies gaps in HCT of ALwO. Drawing on successful practices and evidence-based interventions worldwide, the paper explores challenges, including disparities and barriers, while advocating for patient and family involvement. Additionally, it discusses barriers and perspectives within the Italian health care scenario. The need for specialised training for healthcare providers and the impact of transition on healthcare policies are also addressed. The conclusions underscore the significance of well-managed transitions. The SIO recognises that without proper support during this transition, ALwOs risk facing a gap in healthcare delivery, exacerbating their condition, and increasing the likelihood of complications. Addressing this gap requires concerted efforts to develop effective transition models, enhance healthcare provider awareness, and ensure equitable access to care for all individuals affected by obesity. The document concludes by outlining avenues for future research and improvement.
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Affiliation(s)
- Anita Morandi
- Paediatrics B Unit, Regional Centre for Pediatric Diabetes, Department of Surgery, Dentistry, Pediatrics, and Gynecology, University of Verona, Verona, Italy
| | - Giuseppina Rosaria Umano
- Department of Woman, Child, and General and Specialized Surgery, University of Campania "Luigi Vanvitelli", Naples, Italy
| | | | - Valeria Gugliemi
- Department of Systems Medicine, University of Rome Tor Vergata, Rome, Italy
| | - Giovanna Muscogiuri
- Dipartimento di Medicina Clinica e Chirurgia, Diabetologia e Andrologia, Unità di Endocrinologia, and Cattedra Unesco "Educazione Alla Salute e Allo Sviluppo Sostenibile", University Federico II, Naples, Italy
| | - Claudio Maffeis
- Paediatrics B Unit, Regional Centre for Pediatric Diabetes, Department of Surgery, Dentistry, Pediatrics, and Gynecology, University of Verona, Verona, Italy
| | - Luca Busetto
- Centre for the Study and the Integrated Treatment of Obesity, Internal Medicine 3, Padua University Hospital, Padua, Italy
| | - Silvio Buscemi
- Unit of Clinical Nutrition, Policlinico University Hospital, and Department of Health Promotion, Mother and Child Care, Internal Medicine and Medical Specialties, University of Palermo, Palermo, Italy
| | - Valentino Cherubini
- Department of Women's and Children's Health, Salesi Hospital, 60123, Ancona, Italy
| | - Rocco Barazzoni
- Department of Medical, Surgical and Health Sciences, University of Trieste, Trieste, Italy
| | - Melania Manco
- Unit of Preventive and Predictive Medicine, , Bambino Gesù Children's Hospital, IRCCS, Via F. Baldelli 38, 00146, Rome, Italy.
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Benini F, Brogelli L, Mercante A, Giacomelli L. Transition to Adulthood in Pediatric Palliative Care: A Narrative Review. CHILDREN (BASEL, SWITZERLAND) 2024; 11:860. [PMID: 39062309 PMCID: PMC11276494 DOI: 10.3390/children11070860] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 06/18/2024] [Revised: 07/08/2024] [Accepted: 07/12/2024] [Indexed: 07/28/2024]
Abstract
Pediatric palliative care (PPC) is defined as "the active care of the child's body, quality of life, mind and spirit, also giving support to the family". PPC should be established once a diagnosis of life-limiting or life-threatening disease is reached and should continue as long as necessary. Therefore, pediatric palliative care (PPC) can continue for years, also given the improved care approaches for children with life-limiting or life-threatening diseases. Over time, the child may grow to become a young adult, and when this happens, the transition to adult healthcare services must be undertaken. This article discusses possible interventions, fostering an efficient transition from pediatric to adult palliative care. A narrative review presents issues, experiences, and existing programs. A "Perspectives" section presents opinions and proposals by the authors. The transition process is not limited to a change from pediatric to adult services. Rather, it includes the entire process of the development of the child and requires interdisciplinary management with proper planning and collaboration among professionals of pediatric and adult teams.
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Affiliation(s)
- Franca Benini
- Pediatric Palliative Care, Pain Service, Department of Women’s and Children’s Health, University of Padua, 35122 Padua, Italy;
| | | | - Anna Mercante
- Department of Biomedical and Neuromotor Sciences, University of Bologna, 40126 Bologna, Italy;
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Tóbi L, Prehoda B, Balogh AM, Nagypál P, Kovács K, Miheller P, Iliás Á, Dezsőfi-Gottl A, Cseh Á. Transition is associated with lower disease activity, fewer relapses, better medication adherence, and lower lost-to-follow-up rate as opposed to self-transfer in pediatric-onset inflammatory bowel disease patients: results of a longitudinal, follow-up, controlled study. Therap Adv Gastroenterol 2024; 17:17562848241252947. [PMID: 39156978 PMCID: PMC11327998 DOI: 10.1177/17562848241252947] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/13/2023] [Accepted: 04/15/2024] [Indexed: 08/20/2024] Open
Abstract
Background Despite the continuously rising rate of pediatric-onset inflammatory bowel diseases (PIBD), there are no consensus transitional guidelines or standardized practices. Objectives We aimed to examine: (1) the determinants of a successful transfer, (2) the effects of the transfer versus transition on the disease course and patient compliance, (3) the unique characteristics of PIBD patients, that need special attention in adult care. Design Longitudinal, follow-up, controlled study conducted between 2001 and 2022, with retrospective data collection until 2018, thence prospective. Methods Three hundred fifty-one PIBD patients enrolled in the study, of whom 152 were moved to adult care, with a mean post-transfer follow-up time of 3 years. Seventy-three patients took part in structured transition, whereas 79 self-transferred to adult care. The main outcome measures were disease activity (defined by PCDAI, PUCAI, CDAI, and Mayo-scores) and course, hospitalizations, surgeries, IBD-related complications, including anthropometry and bone density, patient compliance, medication adherence, and continuation of medical care. Results Patients who underwent structured transition spent significantly more time in remission (83.6% ± 28.5% versus 77.5% ± 29.7%, p = 0.0339) and had better adherence to their medications (31.9% versus 16.4% non-adherence rate, p = 0.0455) in adult care, with self-transferred patients having a 1.59-fold increased risk of discontinuing their medical care and a 1.88-fold increased risk of experiencing a relapse. Post-transfer the compliance of patients deteriorated (38.5% versus 29%, p = 0.0002), with the highest lost-to-follow-up rate during the changing period between the healthcare systems (12.7%), in which female gender was a risk factor (p = 0.010). PIBD patients had experienced IBD-related complications (23.4%) and former surgeries (15%) upon arriving at adult care, with high rates of malnutrition, growth impairment, and poor bone health. Conclusion Structured transition plays a key role in ensuring the best disease course and lowering the lost-to-follow-up rate among PIBD patients. Brief summary Structured transition plays a key role in ensuring the best disease outcome among PIBD patients, as in our study it was associated with lower disease activity, fewer relapses, better medication adherence, and lower lost-to-follow-up rate as opposed to self-transfer.
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Affiliation(s)
- Luca Tóbi
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Post Office Box 2, Budapest 1428, Hungary
| | - Bence Prehoda
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
| | - Anna M. Balogh
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
| | - Petra Nagypál
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
| | - Krisztián Kovács
- Department of Laboratory Medicine, Semmelweis University, Budapest, Hungary
| | - Pál Miheller
- Department of Surgery, Transplantation, and Gastroenterology, Semmelweis University, Budapest, Hungary
| | - Ákos Iliás
- Department of Internal Medicine and Oncology, Semmelweis University, Budapest, Hungary
| | - Antal Dezsőfi-Gottl
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
| | - Áron Cseh
- Pediatric Center, MTA Center of Excellence, Semmelweis University, Budapest, Hungary
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Kang N, Lee S. Psychological separation, health locus of control, and transition readiness in adolescents and young adults with type I diabetes. J Pediatr Nurs 2024; 76:38-44. [PMID: 38359543 DOI: 10.1016/j.pedn.2024.01.033] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/21/2023] [Revised: 01/30/2024] [Accepted: 01/31/2024] [Indexed: 02/17/2024]
Abstract
PURPOSE The purpose of this study was to examine the effects of psychological separation and health locus of control on the health care transition readiness of adolescents and young adults (AYAs) with type 1 diabetes. METHODS Data were collected between December 2020 and October 2021. One hundred twelve AYAs with type 1 diabetes treated at a tertiary hospital and under follow-up observation as well as AYAs with type 1 diabetes nationwide who were part of the type 1 diabetes internet community were enrolled. The Psychological Separation Inventory, the Multidimensional Health Locus of Control scale from C, and the Self-management and Transition to Adulthood with Therapeutics = Rx Questionnaire were used. RESULTS Multiple regression analysis indicated that age (β = 0.302, p = .001), hemoglobin A1c (HbA1c) (β = -0.174, p = .040), conflictual separation (β = 0.242, p = .005), functional separation (β = 0.200, p = .045) and attitudinal separation (β = -0.240 p = .015) were significantly associated with health management transition readiness; these predictors explained 27.6% of health care transition readiness (F = 8.062, p = .000). CONCLUSIONS AYAs with type 1 diabetes can enhance readiness for health care transition by fostering psychological separation from parents, effectively managing blood glucose levels, and taking into account age-related factors during the preparation process. At this point, it is essential for healthcare professionals to guide parents in recognizing adolescents' psychological independence and facilitating their supportive role through the process of redefining their roles. PRACTICE IMPLICATIONS Health care providers should promote psychological separation in AYAs. Additionally, taking into account the developmental characteristics of adolescence can facilitate a successful health care transition.
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Affiliation(s)
- Nuri Kang
- Department of Nursing, Asan Medical Center, Seoul, Republic of Korea
| | - Sunhee Lee
- College of Nursing, the Catholic University of Korea, Seoul, Republic of Korea.
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Hwang CK, Harris KT, Wood D. Barriers to Transitional Care in Spina Bifida. Urol Clin North Am 2024; 51:187-196. [PMID: 38609191 DOI: 10.1016/j.ucl.2024.01.006] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/14/2024]
Abstract
The health care needs children with spina bifida evolve over their lifetime; continued, regular contact with appropraitely trained, multidisciplinary providers is crucial to a patient's health and quality of life. Substantial research has been conducted to improve the transition process starting at an early age; however, there continue to be strong barriers to successful transition. This article reviews key aspects of the care of patients with spina bifida, the impact of inadequate transition to adult care, barriers to transition, and offers a potential vision for the future.
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Affiliation(s)
- Catalina K Hwang
- Division of Urology, Children's Hospital Colorado, 13123 East 16th Avenue, Box 323, Aurora, CO 80045, USA
| | - Kelly T Harris
- Division of Urology, Children's Hospital Colorado, 13123 East 16th Avenue, Box 323, Aurora, CO 80045, USA
| | - Dan Wood
- Division of Urology, Children's Hospital Colorado, 13123 East 16th Avenue, Box 323, Aurora, CO 80045, USA.
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Weaver M, McCormick A. Healthy transition: Roadmap for young adults with Down syndrome to adulthood. AMERICAN JOURNAL OF MEDICAL GENETICS. PART C, SEMINARS IN MEDICAL GENETICS 2024; 196:e32065. [PMID: 37746749 DOI: 10.1002/ajmg.c.32065] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 07/31/2023] [Revised: 09/10/2023] [Accepted: 09/12/2023] [Indexed: 09/26/2023]
Abstract
Healthcare transition is the purposeful and planned process for preparing young adults with Down syndrome for an adult oriented healthcare system. Significant gaps of a delayed, incomplete, siloed and decentered transition can be avoided when transition is approached in a longitudinal and holistic manner. Young adults with Down syndrome are specifically vulnerable to these gaps as the combination of intellectual differences and healthcare complexity leads to the need for a process that allows for appropriate preparation to develop the skills and process for an appropriate. To establish a successful transition care plan, the six core elements of policy, tracking, readiness, planning, transfer of care, and complete transition will compose the scaffolding of the transition process and address these gaps in care. A comprehensive tool kit including policy statements, healthcare transition tracking forms, the TRAQ tool, and template portable medical summaries will operationalize those elements and counteract any gaps in the transition process.
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Affiliation(s)
- Maya Weaver
- University of Delware, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania, USA
| | - Andrew McCormick
- Division of Pediatric Hospital Medicine, Children's Hospital of Pittsburgh of UPMC, Pittsburgh, Pennsylvania, USA
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Bailey K, Avolio J, Lo L, Gajaria A, Mooney S, Greer K, Martens H, Tami P, Pidduck J, Cunningham J, Munce S, Toulany A. Social and Structural Drivers of Health and Transition to Adult Care. Pediatrics 2024; 153:e2023062275. [PMID: 38084099 DOI: 10.1542/peds.2023-062275] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 09/08/2023] [Indexed: 01/02/2024] Open
Abstract
CONTEXT Youth with chronic health conditions experience challenges during their transition to adult care. Those with marginalized identities likely experience further disparities in care as they navigate structural barriers throughout transition. OBJECTIVES This scoping review aims to identify the social and structural drivers of health (SSDOH) associated with outcomes for youth transitioning to adult care, particularly those who experience structural marginalization, including Black, Indigenous, and 2-spirit, lesbian, gay, bisexual, transgender, queer or questioning, and others youth. DATA SOURCES Medline, Embase, CINAHL, and PsycINFO were searched from earliest available date to May 2022. STUDY SELECTION Two reviewers screened titles and abstracts, followed by full-text. Disagreements were resolved by a third reviewer. Primary research studying the association between SSDOH and transition outcomes were included. DATA EXTRACTION SSDOH were subcategorized as social drivers, structural drivers, and demographic characteristics. Transition outcomes were classified into themes. Associations between SSDOH and outcomes were assessed according to their statistical significance and were categorized into significant (P < .05), nonsignificant (P > .05), and unclear significance. RESULTS 101 studies were included, identifying 12 social drivers (childhood environment, income, education, employment, health literacy, insurance, geographic location, language, immigration, food security, psychosocial stressors, and stigma) and 5 demographic characteristics (race and ethnicity, gender, illness type, illness severity, and comorbidity). No structural drivers were studied. Gender was significantly associated with communication, quality of life, transfer satisfaction, transfer completion, and transfer timing, and race and ethnicity with appointment keeping and transfer completion. LIMITATIONS Studies were heterogeneous and a meta-analysis was not possible. CONCLUSIONS Gender and race and ethnicity are associated with inequities in transition outcomes. Understanding these associations is crucial in informing transition interventions and mitigating health inequities.
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Affiliation(s)
- Katherine Bailey
- Temerty Faculty of Medicine
- Institute of Health Policy, Management and Evaluation
| | | | - Lisha Lo
- Centre for Quality Improvement and Patient Safety
| | - Amy Gajaria
- Department of Psychiatry, University of Toronto, Toronto, Ontario, Canada
- Margaret and Wallace McCain Centre for Child, Youth, and Family Mental Health, Centre for Addiction and Mental Health, Toronto, Ontario, Canada
| | - Sarah Mooney
- Stollery Children's Hospital, Alberta Health Services, Edmonton, Alberta, Canada
- Alberta Strategy for Patient Oriented Research Support Unit
- Faculty of Nursing, Grant MacEwan University, Edmonton, Alberta, Canada
| | - Katelyn Greer
- Alberta Strategy for Patient Oriented Research Support Unit
| | - Heather Martens
- Patient and Community Engagement Research (PaCER) Program, University of Calgary, Calgary, Alberta,Canada
- Alberta Health Services, Edmonton, Alberta, Canada
- KickStand, Mental Health Foundation, Edmonton, Alberta, Canada
| | - Perrine Tami
- Public Health and Preventative Medicine, Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, Ontario, Canada
| | | | | | - Sarah Munce
- Rehabilitation Sciences Institute
- Department of Occupational Science and Occupational Therapy
- KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, Ontario, Canada
| | - Alene Toulany
- Temerty Faculty of Medicine
- Institute of Health Policy, Management and Evaluation
- Department of Pediatrics, Division of Adolescent Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada
- Child Health and Evaluative Sciences, Sickkids Research Institute, Toronto, Ontario, Canada
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Abstract
Transition of care is the planned, coordinated movement from a child and family environment of pediatrics to a patient centered adult care setting. Epilepsy is a common neurological condition. While seizures remit in a proportion of children, in around 50% of children seizures persist into adulthood. Also, with advances in diagnostics and therapeutics, more children with epilepsy survive into adulthood, and need services of adult neurologists. Clinical guidelines from the American Academy of Pediatrics, American College of Family Physicians and American College of Physicians called for "supporting the healthcare transition from adolescence to adulthood", but this occurs in a minority of patients. There are several challenges to implementing transition of care at the level of the patient and family, pediatric and adult neurologist and with systems of care. Transition needs vary based on the type of epilepsy and epilepsy syndrome and presence of co-morbidities. Transition clinics are essential to effective transfer of care, but implementation remains extremely variable, with a variety of clinics or program structures in countries around the world. There is a need to develop multidisciplinary transition clinics, enhance physician education and establish national guidelines for this important process to be put into practice. Further studies are also needed to develop best practices and assess outcomes of well executed transition programs on epilepsy.
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Affiliation(s)
- Sujata Kanhere
- Division of Pediatric Neurology, Department of Pediatrics, K.J. Somaiya Medical College, Hospital & Research Centre, Mumbai, Maharashtra, India.
| | - Sucheta M Joshi
- Division of Pediatric Neurology, Department of Pediatrics, University of Michigan, Ann Arbor, USA
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15
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Mitchell DL, Shlobin NA, Winterhalter E, Lam SK, Raskin JS. Gaps in transitional care to adulthood for patients with cerebral palsy: a systematic review. Childs Nerv Syst 2023; 39:3083-3101. [PMID: 37552305 PMCID: PMC10643351 DOI: 10.1007/s00381-023-06080-2] [Citation(s) in RCA: 5] [Impact Index Per Article: 2.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/29/2023] [Accepted: 07/14/2023] [Indexed: 08/09/2023]
Abstract
PURPOSE The transition from pediatric to adult care can be complex and difficult to navigate for adolescents with cerebral palsy (CP). We aimed to assess the current state of transitional care for young persons with CP and delineate guidelines for best practice with opportunities for intervention. METHODS A systematic review was conducted using PRISMA guidelines to search PubMed, Embase, and Scopus databases. Articles were screened for relevance via title and abstract prior to full-text review. RESULTS Of 3151 resultant articles, 27 observational studies were included. Fourteen (52%) studies assessed clinical outcomes of patients with CP during and post-transition. Transition-associated poor outcomes included housing instability, unemployment, difficulty forming relationships, increased hospital admission rates, and decreased use of rehabilitation services. Factors associated with improved outcomes included family participation, promotion of self-efficacy, and meeting the adult team before transition. Nine (33%) studies conducted interviews with transition-age persons with CP. Key themes were a lack of transition preparedness, difficulty navigating the adult system, gaps in seamless care, and limited accessibility to specialists and environments suitable for patients with complex care needs. Four (15%) studies examined features of current transition services. Perceived barriers included poor communication within health service teams, limited adult providers accepting CP patients, and the lack of financial resources for specialized care. There was no standardized transition tool or approach. CONCLUSION These findings underscore the importance of a planned transition process in optimizing long-term medical and psychosocial outcomes for persons with CP. Further research, including translational, team-based, and community-engaged research, are needed.
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Affiliation(s)
- Devon L Mitchell
- Division of Pediatric Neurosurgery, Department of Neurological Surgery, Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, 225 E Chicago Ave, Box 28, Chicago, IL, 60611, USA
| | - Nathan A Shlobin
- Division of Pediatric Neurosurgery, Department of Neurological Surgery, Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, 225 E Chicago Ave, Box 28, Chicago, IL, 60611, USA
| | - Emily Winterhalter
- Division of Pediatric Neurosurgery, Department of Neurological Surgery, Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, 225 E Chicago Ave, Box 28, Chicago, IL, 60611, USA
| | - Sandi K Lam
- Division of Pediatric Neurosurgery, Department of Neurological Surgery, Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, 225 E Chicago Ave, Box 28, Chicago, IL, 60611, USA
| | - Jeffrey S Raskin
- Division of Pediatric Neurosurgery, Department of Neurological Surgery, Lurie Children's Hospital, Northwestern University Feinberg School of Medicine, 225 E Chicago Ave, Box 28, Chicago, IL, 60611, USA.
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Lafontaine S, Mok E, Frei J, Henderson M, Rahme E, Dasgupta K, Nakhla M. Associations of Diabetes-related and Health-related Quality of Life With Glycemic Levels in Adolescents With Type 1 Diabetes Preparing to Transition to Adult Care. Can J Diabetes 2023; 47:525-531. [PMID: 37182591 DOI: 10.1016/j.jcjd.2023.05.002] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/04/2022] [Revised: 05/01/2023] [Accepted: 05/08/2023] [Indexed: 05/16/2023]
Abstract
OBJECTIVES As adolescents with type 1 diabetes (T1D) progress to adulthood, they assume responsibility for diabetes self-management while dealing with competing life demands, decreasing parental support, and the transfer to adult care. Lower perceived quality of life (QOL) may hamper diabetes management, which is associated with suboptimal glycemic levels. Our objective was to determine associations of diabetes- and health-related QOL with glycemic management (glycated hemoglobin [A1C]) in adolescents with T1D before their transfer to adult care. METHODS We conducted a cross-sectional analysis of baseline data from the Group Education Trial to Improve Transition (GET-IT- T1D) in adolescents with T1D (16 to 17 years of age). Participants completed validated questionnaires measuring diabetes-related QOL (PedsQL 3.2 Diabetes Module) and health-related QOL (PedsQL 4.0 Generic Core Scales). Associations of QOL Total and subscale scores with A1C were assessed using linear regression models adjusted for sex, diabetes duration, socioeconomic status, insulin pump use, and mental health comorbidity. RESULTS One hundred fifty-three adolescents with T1D were included (mean age, 16.5 [standard deviation, 0.3] years). Diabetes-related QOL Total scores (adjusted β=-0.04; 95% confidence interval [CI], -0.05 to -0.02) as well as subscale scores for Diabetes Symptoms (adjusted β=-0.02; 95% CI, -0.04 to -0.00) and Diabetes Management (adjusted β=-0.04; 95% CI, -0.05 to -0.02) were inversely associated with A1C. Health-related QOL Total scores were not associated with A1C, but Psychosocial Health subscale scores were (adjusted β=-0.01; 95% CI, -0.03 to -0.00). CONCLUSION Our results suggest that strategies focussing on diabetes-related QOL and psychosocial health may help prepare adolescents for the increasing responsibility of diabetes self-care.
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Affiliation(s)
- Simon Lafontaine
- Division of Endocrinology, Department of Pediatrics, McGill University Health Centre, Montréal, Québec, Canada
| | - Elise Mok
- Research Institute of the McGill University Health Centre, Montréal, Québec, Canada
| | - Jennifer Frei
- Research Institute of the McGill University Health Centre, Montréal, Québec, Canada
| | - Mélanie Henderson
- Department of Pediatrics, Université de Montréal, Montréal, Québec, Canada; Centre de Recherche CHU Sainte-Justine, Montréal, Québec, Canada; School of Public Health, Department of Social and Preventive Medicine, Université de Montréal, Montréal, Québec, Canada
| | - Elham Rahme
- Research Institute of the McGill University Health Centre, Montréal, Québec, Canada
| | - Kaberi Dasgupta
- Research Institute of the McGill University Health Centre, Montréal, Québec, Canada
| | - Meranda Nakhla
- Division of Endocrinology, Department of Pediatrics, McGill University Health Centre, Montréal, Québec, Canada; Research Institute of the McGill University Health Centre, Montréal, Québec, Canada.
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Abstract
This clinical report provides pediatricians evidence-based information on the developmentally appropriate, comprehensive clinical care for hospitalized adolescents. Included in this report are opportunities and challenges facing pediatricians when caring for specific hospitalized adolescent populations. The companion policy statement, “The Hospitalized Adolescent,” includes detailed descriptions of adolescent hospital admission demographics, personnel recommendations, and hospital setting and design advice, as well as sections on educational services, legal and ethical matters, and transitions to adult facilities.
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Serfas J, Spates T, D’Ottavio A, Spears T, Ciociola E, Chiswell K, Davidson-Ray L, Ryan G, Forestieri N, Krasuski RA, Kemper AR, Hoffman TM, Walsh MJ, Sang CJ, Welke KF, Li JS. Disparities in Loss to Follow-Up Among Adults With Congenital Heart Disease in North Carolina. World J Pediatr Congenit Heart Surg 2022; 13:707-715. [DOI: 10.1177/21501351221111998] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Abstract
Background The AHA/ACC Adult Congenital Heart Disease guidelines recommend that most adults with congenital heart disease (CHD) follow-up with CHD cardiologists every 1 to 2 years because longer gaps in care are associated with adverse outcomes. This study aimed to determine the proportion of patients in North Carolina who did not have recommended follow-up and to explore predictors of loss to follow-up. Methods Patients ages ≥18 years with a healthcare encounter from 2008 to 2013 in a statewide North Carolina database with an ICD-9 code for CHD were assessed. The proportion with cardiology follow-up within 24 months following index encounter was assessed with Kaplan-Meier estimates. Cox regression was utilized to identify demographic factors associated with differences in follow-up. Results 2822 patients were identified. Median age was 35 years; 55% were female. 70% were white, 22% black, and 3% Hispanic; 36% had severe CHD. The proportion with 2-year cardiology follow-up was 61%. Those with severe CHD were more likely to have timely follow-up than those with less severe CHD (72% vs 55%, P < .01). Black patients had a lower likelihood of follow-up than white patients (56% vs 64%, P = .01). Multivariable Cox regression identified younger age, non-severe CHD, and non-white race as risk factors for a lower likelihood of follow-up by 2 years. Conclusion 39% of adults with CHD in North Carolina are not meeting AHA/ACC recommendations for follow-up. Younger and minority patients and those with non-severe CHD were particularly vulnerable to inadequate follow-up; targeted efforts to retain these patients in care may be helpful.
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Affiliation(s)
- J.D. Serfas
- Duke University Medical Center, Durham, NC, USA
| | - Toi Spates
- Duke University Medical Center, Durham, NC, USA
| | | | - Tracy Spears
- Duke Clinical Research Institute, Durham, NC, USA
| | | | | | | | - Grace Ryan
- Duke Clinical Research Institute, Durham, NC, USA
| | - Nina Forestieri
- State Center for Health Statistics, North Carolina Department of Health and Human Services, Raleigh, NC, USA
| | | | | | | | | | | | - Karl F. Welke
- Levine Children’s Hospital/Atrium Health, Charlotte, NC, USA
| | - Jennifer S. Li
- Duke University Medical Center, Durham, NC, USA
- Duke Clinical Research Institute, Durham, NC, USA
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19
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Michael R, Ran G, Gali Cinamon R. Thinking About the Future: Perceived Barriers and Supports Among Israeli Young Adults With Physical Disabilities. REHABILITATION COUNSELING BULLETIN 2022. [DOI: 10.1177/00343552221124564] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/14/2022]
Abstract
Young adults with disabilities tend to have lower rates of employment and career indicators as compared with youth without disabilities. Therefore, understanding the factors that may influence such outcomes is crucial. This study examined the future perceptions of 18 young adults with physical disabilities while focusing on the barriers and supports that may impact their transition into adult life. All participants were living in a rehabilitative student community in southern Israel. They participated in an in-depth semi-structured interview. Data analysis, which was conducted according to an adaptation of the Consensual Qualitative Research method, revealed four major domains: emotions, future life roles, barriers, and supports. Findings emphasized that the participants’ disability was extremely dominant in their future perceptions. In general, they expressed caution and concern about their future. They also tended not to express detailed long-term planning. Their perceptions focused on their future work, future intimate relationships, and the need to manage simultaneously different roles. When addressing their possible barriers and supports, they related both to environmental (e.g., social stigma and community support) and to personal (e.g., low self-esteem and high motivation) factors. Implications for research and practice are discussed.
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Affiliation(s)
| | - Galia Ran
- Kibbutzim College of Education, Tel Aviv, Israel
- Tel-Aviv University, Israel
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20
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ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. J Pediatr Gastroenterol Nutr 2022; 75:369-386. [PMID: 35758521 DOI: 10.1097/mpg.0000000000003540] [Citation(s) in RCA: 57] [Impact Index Per Article: 19.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 02/06/2023]
Abstract
OBJECTIVES To gather the current evidence and to offer recommendations for follow-up and management. METHODS The Special Interest Group on Celiac Diseases of the European Society of Paediatric Gastroenterology Hepatology and Nutrition formulated ten questions considered to be essential for follow-up care. A literature search (January 2010-March 2020) was performed in PubMed or Medline. Relevant publications were identified and potentially eligible studies were assessed. Statements and recommendations were developed and discussed by all coauthors. Recommendations were voted upon: joint agreement was set as at least 85%. RESULTS Publications (n = 2775) were identified and 164 were included. Using evidence or expert opinion, 37 recommendations were formulated on: The need to perform follow-up, its frequency and what should be assessed, how to assess adherence to the gluten-free diet, when to expect catch-up growth, how to treat anemia, how to approach persistent high serum levels of antibodies against tissue-transglutaminase, the indication to perform biopsies, assessment of quality of life, management of children with unclear diagnosis for which a gluten-challenge is indicated, children with associated type 1 diabetes or IgA deficiency, cases of potential celiac disease, which professionals should perform follow-up, how to improve the communication to patients and their parents/caregivers and transition from pediatric to adult health care. CONCLUSIONS We offer recommendations to improve follow-up of children and adolescents with celiac disease and highlight gaps that should be investigated to further improve management.
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Varshney K, Iriowen R, Morrell K, Pillay P, Fossi A, Stephens MM. Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review. Am J Med Genet A 2022; 188:2293-2302. [PMID: 35686676 PMCID: PMC9545419 DOI: 10.1002/ajmg.a.62854] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/03/2021] [Revised: 03/01/2022] [Accepted: 05/13/2022] [Indexed: 11/11/2022]
Abstract
Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co-morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as well as the details, barriers, and difficulties of these transitions for patients. Hence, we aimed to provide a scoping review of the literature in PubMed, Scopus, and CINAHL on the topic of healthcare transitions (HCTs) for patients with DS. Findings suggest patients with DS who continued receiving care as an adult from a pediatric care provider tended to experience co-morbidities and other adverse health issues at higher rates than those who entirely switch to an adult-care team. Patients with DS were unable to undergo transition due to multiple barriers, such as low income, limited/public insurance, gender, and race. We propose potential steps for transition, which focus on ensuring early planning, communicating better, coordinating services, assessing decision-making capacity, and providing ongoing social and financial support. Future research must further identify and address barriers to HCTs for people with DS.
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Affiliation(s)
- Karan Varshney
- Jefferson College of Population HealthThomas Jefferson UniversityPhiladelphiaPennsylvaniaUSA
- School of MedicineDeakin UniversityGeelongVictoriaAustralia
| | - Rosemary Iriowen
- Jefferson College of Population HealthThomas Jefferson UniversityPhiladelphiaPennsylvaniaUSA
| | - Kayla Morrell
- Sidney Kimmel Medical CollegeThomas Jefferson UniversityPhiladelphiaPennsylvaniaUSA
| | - Preshon Pillay
- School of MedicineDeakin UniversityGeelongVictoriaAustralia
| | - Alexander Fossi
- Center for Autism and NeurodiversityThomas Jefferson UniversityPhiladelphiaPennsylvaniaUSA
| | - Mary M. Stephens
- Department of Family & Community MedicineThomas Jefferson UniversityPhiladelphiaPennsylvaniaUSA
- Center for Special Healthcare NeedsChristianaDelawareUSA
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Sandquist M, Davenport T, Monaco J, Lyon ME. The Transition to Adulthood for Youth Living with Rare Diseases. CHILDREN 2022; 9:children9050710. [PMID: 35626888 PMCID: PMC9139297 DOI: 10.3390/children9050710] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 03/27/2022] [Revised: 05/05/2022] [Accepted: 05/08/2022] [Indexed: 12/03/2022]
Abstract
More children with rare diseases survive into adulthood. The transition period to adult healthcare presents many challenges for pediatric rare diseases. Few adolescents or their families receive any transitional support for the transition to adult healthcare or for their maturing psychosocial needs. Understanding the challenges in the transition process is critical to ensure that interventions designed to improve the transition are holistic and meet the needs of the youth and their families. Few transition programs are in place to meet the needs of those youth with rare diseases who cannot participate in medical decision making or who live independently because of severe disabilities and comorbidities. We searched the literature on preparation and outcomes for youth living with rare diseases in PubMed, CINAHL, and PsychInfo, excluding publications before 2010. The results revealed seven studies specific to rare diseases, special needs, or chronic conditions. Next, we discussed transition with experts in the field, GotTransition.org, and citation chaining, yielding a total of 14 sources. The barriers and challenges to transition were identified. Articles discussing solutions and interventions for transition in medically complex children were categorized care coordination or transition readiness. A large portion of children with rare disease are underserved and experience health disparities in transition.
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Affiliation(s)
- Melanie Sandquist
- Children’s National Hospital, Center for Translational Research, Washington, DC 20010, USA;
- Milken School of Public Health, George Washington University, Washington, DC 20010, USA
| | - TjaMeika Davenport
- Children’s National Hospital, Goldberg Center for Community Pediatric Health, Washington, DC 20010, USA;
| | - Jana Monaco
- Children’s National Hospital, National Patient and Family Advisory Council, Washington, DC 20010, USA;
| | - Maureen E. Lyon
- Children’s National Hospital, Center for Translational Research, Washington, DC 20010, USA;
- School of Medicine and Health Sciences, George Washington University, Washington, DC 20052, USA
- Correspondence:
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23
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Cheak-Zamora N, Betz C, Mandy T. Measuring health care transition: Across time and into the future. J Pediatr Nurs 2022; 64:91-101. [PMID: 35248956 DOI: 10.1016/j.pedn.2022.02.018] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/24/2021] [Revised: 02/01/2022] [Accepted: 02/21/2022] [Indexed: 01/19/2023]
Abstract
PROBLEM Youth with special health care needs often experience significant difficulty transitioning into adult health care services and adult life. Services supporting youths' transition from pediatric to adult health care (Health Care Transition (HCT)) have been a priority for nearly 30 years to improve this transition process. The Health Resources and Service Administration, Maternal and Child Health Bureau have measured HCT service provision since 2001 but the longitudinal use of this measure has never been examined (Blumberg, 2003; Maternal and Child Health Bureau, n.d.). ELIGIBILITY CRITERIA This manuscript highlights the consistent and inconsistent uses of HCT constructs in two prominent national surveys (the National Survey of Children with Special Health Care Needs (NS-CSHCN) and the National Survey of Children's Health (NSCH)) between 2001 and 2019. All studies utilizing an HCT measure within a national survey between the 18 years were included in this examination. RESULTS Significant changes have been made to the measurement of HCT service provision resulting in inconsistencies over the last 18 years. Measurement criteria and survey questions have changed substantially from the NS-CSHCN and NSCH limiting one's ability to examine trends in HCT since 2001. Since 2016, few changes have been made, allowing for analysis of trends over time. Importantly, the NSCH includes added questions pertaining to HCT that are not included in the composite HCT outcome measure. CONCLUSION Future work should include a validation study of the HCT outcome in the National Survey of Children's Health and inclusion of additional HCT questions to promote continued and extensive use of a measure that more fully represents the needs of youth and their families.
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Affiliation(s)
- Nancy Cheak-Zamora
- Department of Health Professions, School of Health Professions, University of Missouri- Columbia, 510 Clark Hall, Columbia, MO 65211, United States of America.
| | - Cecily Betz
- University Center for Excellence in Developmental Disabilities, University of Southern California, 4650 Sunset Blvd. Mailstop 53, Los Angeles, CA 90027, United States of America.
| | - Trevor Mandy
- Department of Health Management and Informatics, School of Medicine, University of Missouri- Columbia, 510 Clark Hall, Columbia, MO 65211, United States of America.
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Casseus M, Cheng J. Variations in Healthcare Transition Preparation Among Youth With Chronic Conditions. Am J Prev Med 2022; 62:e275-e283. [PMID: 34949508 DOI: 10.1016/j.amepre.2021.10.010] [Citation(s) in RCA: 3] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/24/2021] [Revised: 10/05/2021] [Accepted: 10/07/2021] [Indexed: 11/25/2022]
Abstract
INTRODUCTION Youth with special healthcare needs have low rates of healthcare transition services, which can affect lifelong functioning and quality of life. This study examines the variations in receipt of healthcare transition services among youth with special healthcare needs. METHODS Data from the 2016-2018 National Survey of Children's Health (N=102,341) were analyzed in 2021. Receipt of healthcare transition services by youth with select health conditions was compared with youth with other special healthcare needs. Bivariate and multivariable analyses assessed the associations between the receipt of healthcare transition services, sociodemographic characteristics, and health conditions. RESULTS Among youth with special healthcare needs, the prevalence of receiving healthcare transition services was lowest among youth with speech or other language disorders (8.5%), intellectual disabilities (9.4%), and autism spectrum disorder (11.1%). Low prevalence of receiving healthcare transition services was also observed for youth with developmental delays (12.6%), learning disabilities (14.2%), and behavior or conduct problems (15.5%). Youth with developmental delays (AOR=0.70, 95% CI=0.52, 0.95), intellectual disabilities (AOR=0.45, 95% CI=0.26, 0.78), learning disabilities (AOR=0.77, 95% CI=0.60, 0.99), autism spectrum disorder (AOR=0.60, 95% CI=0.41, 0.86), and speech or other language disorders (AOR=0.48, 95% CI=0.32, 0.72) had lower odds of receiving healthcare transition services than youth with other special healthcare needs. CONCLUSIONS Findings suggest that the receipt of healthcare transition services varies substantially by the type of chronic health condition and highlight the need for increased healthcare transition services for youth with special healthcare needs, especially for youth with neurodevelopmental disabilities and speech or other language disorders.
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Affiliation(s)
- Myriam Casseus
- Research Center, Children's Specialized Hospital, New Brunswick, New Jersey.
| | - JenFu Cheng
- Physiatry Section, Children's Specialized Hospital, Mountainside, New Jersey; Department of Physical Medicine & Rehabilitation, Rutgers New Jersey Medical School, Newark, New Jersey; Department of Pediatrics, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey
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Mikkelson A, Sheller B, Williams BJ, Churchill SS, Friedman C. Transition to adult dental care from a pediatric hospital dental home for patients with special health care needs. SPECIAL CARE IN DENTISTRY 2022; 42:333-342. [PMID: 34997629 DOI: 10.1111/scd.12690] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/02/2021] [Revised: 12/08/2021] [Accepted: 12/12/2021] [Indexed: 11/27/2022]
Abstract
AIMS This study describes patients with complex Special Health Care Needs (SHCN) transitioning from a pediatric hospital clinic dental home to adult care and evaluates effectiveness of transition practices. METHODS AND RESULTS Demographics, medical/behavioral complexity, and documentation of transition processes were collected for patients graduated from the service in 2018/2019. An invitation to complete a survey assessing transition was sent to patients/guardians ≥ 14 months after the final visit. Seventy-nine patients graduated and 94% required accommodation for SHCN: 47% medical, 42% medical + behavioral, and 5% behavioral only. Of 63 eligible patients/guardians, 29 completed surveys. While 90% of surveyed patients had established some/all adult medical care, only 41% completed a dental visit, and less than 28% established a dental home. Medical/behavioral complexity, payer, and time since graduation did not impact having a visit. CONCLUSIONS This study found ineffectiveness of departmental protocol for transition to adult dental homes for patients with SHCN. Developing an optimal transition process is complex and will require collaboration of all stakeholders. Introducing transition in early teen years, tracking progress at subsequent visits, assessing patient readiness, summarizing history for receiving providers, and verifying transition are elements of medical transition programs that should be included in dental transitions.
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Affiliation(s)
- Audrey Mikkelson
- Pediatric Dentistry, University of Washington School of Dentistry, Seattle, Washington, USA
| | - Barbara Sheller
- Pediatric Dentistry, Seattle Children's Hospital, Departments of Orthodontics and of Pediatric Dentistry, University of Washington School of Dentistry, Seattle, Washington, USA
| | - Bryan J Williams
- Pediatric Dentistry, Seattle Children's Hospital, Departments of Orthodontics and of Pediatric Dentistry, University of Washington School of Dentistry, Seattle, Washington, USA
| | - Shervin S Churchill
- Child, Family, and Population Health Nursing, University of Washington School of Nursing, Seattle, Washington, USA
| | - Clive Friedman
- Pediatric Dentistry, Schulich School of Medicine and Dentistry, London, Ontario, Canada
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Abstract
Health and health care disparities in pediatric rheumatology are prevalent among socially disadvantaged and marginalized populations based on race/ethnicity, socioeconomic position, and geographic region. These groups are more likely to experience greater disease severity, morbidity, mortality, decreased quality of life, and poor mental health outcomes, which are in part due to persistent structural and institutional barriers, including decreased access to quality health care. Most of the research on health and health care disparities in pediatric rheumatology focuses on juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus; there are significant gaps in the literature assessing disparities associated with other pediatric rheumatic diseases. Understanding the underlying causes of health care disparities will ultimately inform the development and implementation of innovative policies and interventions on a federal, local, and individual level.
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Affiliation(s)
- Alisha M Akinsete
- Division of Pediatric Rheumatology, Department of Pediatrics, Children's Hospital at Montefiore/Albert Einstein College of Medicine, 3415 Bainbridge Avenue, Bronx, NY 10467, USA. https://twitter.com/@akinsetemd
| | - Jennifer M P Woo
- Epidemiology Branch, National Institute of Environmental Health Sciences, National Institutes of Health, 111 TW Alexander Drive, Research Triangle Park, NC 27709, USA. https://twitter.com/@jmpwoo
| | - Tamar B Rubinstein
- Division of Pediatric Rheumatology, Department of Pediatrics, Children's Hospital at Montefiore/Albert Einstein College of Medicine, 3415 Bainbridge Avenue, Bronx, NY 10467, USA.
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Wright S, Conn BM, Shahinian M, Keyllian C, Tanaka D, Iverson E. Finding MyVOICE: A Mixed-Methods Examination of Health Outcomes of Young Adults with Chronic Illness Transitioning from Pediatric to Adult Health Care. J Pediatr Health Care 2021; 35:610-620. [PMID: 34325977 DOI: 10.1016/j.pedhc.2021.06.002] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/22/2021] [Revised: 06/03/2021] [Accepted: 06/10/2021] [Indexed: 11/18/2022]
Abstract
INTRODUCTION This study examines health use outcomes of young adults with chronic illness following participation in a transition program and identifies variables that impact outcomes. METHOD A sample of 119 ethnically diverse, low-income young adults (mean age = 21.8 years) was interviewed 6 months post-transition. Chi-square tests and logistic regression analyses examined the relationship between variables and outcomes. Responses to open-ended questions provided context to findings. RESULTS Primary care and insurance linkage were significantly higher for patients enrolled in a fully-formed clinic than patients enrolled early in the clinic's development. Patients with multiple diagnoses reported significantly more hospitalizations and specialty care engagement. Hospitalizations and possession of medical records differed significantly by subspecialty. Visit number predicted hospitalizations after accounting for subspecialty, but not after accounting for the number of conditions. DISCUSSION This study highlights the impact of disease type and severity on post-transition outcomes following participation in a transition program serving socially and medically complex patients.
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Chisolm DJ, Keedy HE, Hart LC, Chavez LJ, Dolce M, Morack J, Grannis C, Kelleher K. Exploring Health Literacy, Transition Readiness, and Healthcare Utilization in Medicaid Chronically Ill Youth. J Adolesc Health 2021; 69:622-628. [PMID: 33952419 PMCID: PMC8429056 DOI: 10.1016/j.jadohealth.2021.03.023] [Citation(s) in RCA: 12] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/15/2021] [Revised: 03/10/2021] [Accepted: 03/26/2021] [Indexed: 11/26/2022]
Abstract
PURPOSE Youths with special healthcare needs face challenges transitioning from pediatric to adult health care. Understanding possible mechanisms contributing to poor healthcare transition could improve care. This study explores associations between health literacy (HL), transition readiness, and healthcare utilization. METHODS Youths with special healthcare needs aged 12-18 years were recruited from a Medicaid accountable care organization (2012-2017). Outcome measures included transition readiness (Transition Readiness Assessment Questionnaire), and healthcare utilization (any well-check, hospitalization, emergency department [ED] visit, or ambulatory sensitive condition ED visit). Multivariate regression analyses examined whether HL (adequate vs. inadequate) predicted outcomes, after adjusting for covariates. Models were then created to examine whether the effect of HL on healthcare utilization was mediated by transition readiness. RESULTS Among 417 youths with special healthcare needs, 67.1% reported adequate HL. Relative to inadequate HL, teens with adequate HL had significantly higher average Transition Readiness Assessment Questionnaire-20 scores (β = .34, p < .001). Controlling for covariates, HL was a significant predictor of having an ambulatory sensitive condition ED visit and having any ED visits neared significance. There was a positive transition readiness mediation effect on having an ED visit, with higher transition readiness being associated with higher odds of having any ED visit in the mediation analysis. CONCLUSIONS HL is independently associated with higher transition readiness and lower ambulatory sensitive condition ED use, but pathways of action require further study.
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Affiliation(s)
- Deena J Chisolm
- Center for Innovation in Pediatric Practice, The Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, Ohio; College of Public Health, The Ohio State University, Columbus, Ohio
| | - Hannah E Keedy
- Center for Innovation in Pediatric Practice, The Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, Ohio.
| | - Laura C Hart
- Center for Innovation in Pediatric Practice, The Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, Ohio; College of Medicine, Department of Pediatrics, The Ohio State University, Columbus, Ohio
| | - Laura J Chavez
- Center for Innovation in Pediatric Practice, The Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, Ohio
| | - Millie Dolce
- Center for Innovation in Pediatric Practice, The Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, Ohio
| | - Jennifer Morack
- Center for Innovation in Pediatric Practice, The Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, Ohio
| | - Connor Grannis
- Center for Innovation in Pediatric Practice, The Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, Ohio
| | - Kelly Kelleher
- Center for Innovation in Pediatric Practice, The Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, Ohio; College of Medicine, Department of Pediatrics, The Ohio State University, Columbus, Ohio
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Weber-Gasparoni K. Transitioning Adolescent Patients with Special Health Care Needs from Pediatric to Adult Dental Care. Dent Clin North Am 2021; 65:719-729. [PMID: 34503663 DOI: 10.1016/j.cden.2021.06.010] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
Health care transition from adolescence into adulthood is a complex process that often lacks care coordination, planning, and collaboration among the parties involved. Dental transition is significantly more challenging for adolescents with special health care needs. Shortage of qualified general dentists willing to treat these individuals and low dental reimbursement by public insurance programs are significant barriers to successful transition. Adequate training to increase dental workforce, insurance benefits, protocol development, and research are needed to ensure successful transition for this population. Meanwhile, it is important to target individuals less likely to access adequate oral health care and achieve satisfactory transition.
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Affiliation(s)
- Karin Weber-Gasparoni
- Department of Pediatric Dentistry, University of Iowa, 202 Dental Science South, Iowa City, IA 52242-1001, USA.
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Ilango SM, Lebrun-Harris LA, Jones JR, McManus MA, Cyr M, Mann MY, McLellan SB, White PH. Associations Between Health Care Transition Preparation Among Youth in the U.S. and Other Components of a Well-Functioning System of Services. J Adolesc Health 2021; 69:414-423. [PMID: 33712385 DOI: 10.1016/j.jadohealth.2021.01.006] [Citation(s) in RCA: 6] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/19/2020] [Revised: 11/30/2020] [Accepted: 01/06/2021] [Indexed: 10/21/2022]
Abstract
PURPOSE This study examines the relationships between receipt of health care transition (HCT) preparation among U.S. youth and five other components of a well-functioning system of services (family partnership in decision-making, medical home, early/continuous screening for special health care needs [SHCN], continuous/adequate health insurance, access to community-based services). METHODS Data came from the combined 2016-2017 National Survey of Children's Health (n = 29,617 youth ages 12-17). Parents/caregivers answered questions about their child's health care experiences, which were combined to measure receipt of HCT preparation and the other five components of a well-functioning system of services. Unadjusted and adjusted analyses were conducted to examine associations, stratified by youth with and without special health care needs (YSHCN/non-YSHCN). RESULTS About 16.7% of YSCHN and 13.9% of non-YSHCN received HCT preparation (p = .0040). Additionally, 25.3% of YSHCN and 27.3% of non-YSHCN received all five remaining components of a system of services (p = .1212). HCT preparation was positively associated with receipt of the combined five components among both YSHCN (adjusted prevalence rate ratio = 1.53, 95% confidence interval: 1.20-1.86) and non-YSHCN (adjusted prevalence rate ratio = 1.63, 95% confidence interval: 1.39-1.88). Regarding individual system of services components, early and continuous screening for SHCN was significantly associated with HCT preparation for both populations. For non-YSHCN only, having a medical home was associated with HCT preparation. The remaining three components were not associated with HCT preparation for either population after adjusting for sociodemographic characteristics. CONCLUSIONS Among both YSHCN and non-YSHCN, HCT preparation is positively associated with receipt of early and continuous screening for SHCN as well as the five combined components of a well-functioning system of services.
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Affiliation(s)
- Samhita M Ilango
- The National Alliance to Advance Adolescent Health/Got Transition, Washington, D.C..
| | - Lydie A Lebrun-Harris
- Health Resources and Services Administration, Maternal and Child Health Bureau, Rockville, Maryland
| | - Jessica R Jones
- Health Resources and Services Administration, Maternal and Child Health Bureau, Rockville, Maryland
| | - Margaret A McManus
- The National Alliance to Advance Adolescent Health/Got Transition, Washington, D.C
| | - Mallory Cyr
- Got Transition Cabinet Executive Team, Washington, D.C
| | - Marie Y Mann
- Health Resources and Services Administration, Maternal and Child Health Bureau, Rockville, Maryland
| | - Sara Beth McLellan
- Health Resources and Services Administration, Maternal and Child Health Bureau, Rockville, Maryland
| | - Patience H White
- The National Alliance to Advance Adolescent Health/Got Transition, Washington, D.C
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Chawla J, Edwards EA, Griffiths AL, Nixon GM, Suresh S, Twiss J, Vandeleur M, Waters KA, Wilson AC, Wilson S, Tai A. Ventilatory support at home for children: A joint position paper from the Thoracic Society of Australia and New Zealand/Australasian Sleep Association. Respirology 2021; 26:920-937. [PMID: 34387937 PMCID: PMC9291882 DOI: 10.1111/resp.14121] [Citation(s) in RCA: 19] [Impact Index Per Article: 4.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/12/2020] [Revised: 04/04/2021] [Accepted: 07/05/2021] [Indexed: 11/28/2022]
Abstract
The goal of this position paper on ventilatory support at home for children is to provide expert consensus from Australia and New Zealand on optimal care for children requiring ventilatory support at home, both non-invasive and invasive. It was compiled by members of the Thoracic Society of Australia and New Zealand (TSANZ) and the Australasian Sleep Association (ASA). This document provides recommendations to support the development of improved services for Australian and New Zealand children who require long-term ventilatory support. Issues relevant to providers of equipment and areas of research need are highlighted.
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Affiliation(s)
- Jasneek Chawla
- Department of Respiratory and Sleep Medicine, Queensland Children's Hospital, Brisbane, Queensland, Australia.,School of Clinical Medicine, University of Queensland, Brisbane, Queensland, Australia
| | - Elizabeth A Edwards
- New Zealand Respiratory & Sleep Institute, Starship Children's Hospital, Auckland, New Zealand
| | - Amanda L Griffiths
- Respiratory & Sleep Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia.,Murdoch Children's Research Institute, Melbourne, Victoria, Australia.,University of Melbourne, Melbourne, Victoria, Australia
| | - Gillian M Nixon
- Melbourne Children's Sleep Centre, Monash Children's Hospital, Melbourne, Victoria, Australia.,Department of Paediatrics, Monash University, Melbourne, Victoria, Australia
| | - Sadasivam Suresh
- Department of Respiratory and Sleep Medicine, Queensland Children's Hospital, Brisbane, Queensland, Australia.,School of Clinical Medicine, University of Queensland, Brisbane, Queensland, Australia
| | - Jacob Twiss
- New Zealand Respiratory & Sleep Institute, Starship Children's Hospital, Auckland, New Zealand
| | - Moya Vandeleur
- Respiratory & Sleep Medicine, Royal Children's Hospital, Melbourne, Victoria, Australia.,Murdoch Children's Research Institute, Melbourne, Victoria, Australia
| | - Karen A Waters
- Sleep Medicine, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.,University of Sydney, Sydney, New South Wales, Australia
| | - Andrew C Wilson
- Respiratory & Sleep Medicine, Princess Margaret Hospital for Children, Perth, Western Australia, Australia.,School of Paediatrics and Child Health, University of Western Australia, Perth, Western Australia, Australia
| | - Susan Wilson
- Child Youth Mental Health Services, Queensland Children's Hospital, Brisbane, Queensland, Australia
| | - Andrew Tai
- Respiratory & Sleep Medicine, Women's and Children's Hospital, Adelaide, South Australia, Australia.,Robinson Research Institute, University of Adelaide, Adelaide, South Australia, Australia
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TRAQ Changes: Improving the Measurement of Transition Readiness by the Transition Readiness Assessment Questionnaire. J Pediatr Nurs 2021; 59:188-195. [PMID: 34020387 DOI: 10.1016/j.pedn.2021.04.019] [Citation(s) in RCA: 24] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/01/2020] [Revised: 03/31/2021] [Accepted: 04/19/2021] [Indexed: 11/21/2022]
Abstract
OBJECTIVE The purpose of the current study was improving the measurement precision of the Transition Readiness Assessment Questionnaire (TRAQ 5.0-20 item) in order to gain better decimation of transition readiness skills across the 5 Stages of Change-from Precontemplation to Mastery. METHODS In stage 1, starting with the TRAQ 5.0 20-item, 5 domain subscale questionnaire, we eliminated the five lowest discriminating items using Item response theory (IRT) in MPlus v7.4,which eliminated the domain subscale Managing Daily Activities, and we e added 15 more difficult and better discriminating items. We added items to both to the remaining 4 domain subscales and created a new domain subscale entitled Future Planning. The revised 30-item TRAQ was piloted among 386 youth between 16 and 24 years old (mean = 20 years; 54% female; 87% White). RESULTS After examining the model fit, discrimination and difficulty coefficients, and modification indices, we eliminated 10 items and the new Future Planning domain subscale we eliminated. The resulting questionnaire has 4 domain subscales and 20 items. It exhibited good to excellent fit to the data, χ2(164) = 887.239, p < .001, CFI = 0.943, TLI = 0.93, RMSEA = 0.0942 (90% CI: 0.090, 0.114), WRMR = 1.111. All items have acceptable discrimination coefficients. Each of the 4 domain subscales have improved reliability as compared with the original TRAQ 5.0 20 item scale. CONCLUSIONS The revised 20-itemTRAQ 6.0 has 4 domains subscales; Managing medications, keeping appointment, tracking health issues, and Talking with providers and has good construct validity as demonstrated by model fit. By adding more difficult items to the 4 resulting domain subscales, we have demonstrated improved item discrimination and difficulty, and therefore can better measure acquisition of transition readiness skills across the five stages of change from pre-contemplation to contemplation to initiation to action and finally to mastery.
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Pieters H, Watson M, Baca CM. Pediatric and adult epileptologist perspectives and experiences of pediatric to adult epilepsy care transition: "Saying goodbye and opening a door.". Epilepsy Behav 2021; 120:107981. [PMID: 33962252 DOI: 10.1016/j.yebeh.2021.107981] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/31/2020] [Accepted: 04/05/2021] [Indexed: 11/28/2022]
Abstract
We aimed to describe perspectives of transition and transfer of adolescents and young adults with childhood-onset epilepsy from pediatric to adult care from the viewpoints of both pediatric and adult epileptologists. Telephone semi-structured interviews with pediatric (n = 15) and adult (n = 11) epileptologists at leading U.S. epilepsy centers were used to collect data about the transition process. Interviews were audio-recorded, transcribed, systematically coded using thematic analysis by two independent researchers, and subsequently checked for agreement during regular meetings. Participants were on average 46 years old (SD = 7.4), 50% male, 91% Non-Hispanic and 85% Caucasian; all had completed a formal epilepsy or clinical neurophysiology fellowship (mean = 11 years since terminal training) and were employed at a comprehensive epilepsy center. Three interrelated themes regarding epileptologists' perspectives of epilepsy transition and transfer of care were evident: (1) the process is unnatural and disruptive, (2) clinicians make the best of challenges, and (3) the epilepsy transition process includes a spectrum of broad needs some of which are unique to epilepsy care while others are common to other chronic diseases. Despite challenges, epilepsy clinicians spontaneously expressed stress, empathy, and commitment to providing the best possible care.
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Affiliation(s)
- Huibrie Pieters
- School of Nursing, University of California Los Angeles, Los Angeles, CA, United States
| | - Meagan Watson
- Department of Neurology, University of Colorado School of Medicine, Aurora, CO, United States
| | - Christine M Baca
- Department of Neurology, University of Colorado School of Medicine, Aurora, CO, United States.
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VanZant JS, McCormick AA. Health care transition for individuals with Down syndrome: A needs assessment. Am J Med Genet A 2021; 185:3019-3027. [PMID: 34165882 DOI: 10.1002/ajmg.a.62403] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/23/2021] [Revised: 05/28/2021] [Accepted: 06/12/2021] [Indexed: 11/06/2022]
Abstract
Transition to adulthood is a multifaceted process that requires integration of numerous domains within a young person's life, including their health care. For children with special health care needs, the transition process can be markedly more difficult to navigate. This is especially true for children with Down syndrome (DS) who receive fewer transition planning services. The aim of this needs assessment was to identify current trends, potential gaps, and areas for targeted intervention within the current transition landscape for individuals with DS. We utilized DS-Connect, a National Institutes of Health (NIH) funded family/self-advocate survey repository, as a platform to recruit respondents to the "Transition to Adulthood" survey. Sixty-five respondents (64 parents and 1 caregiver) completed the survey. Responses indicated that 42% of respondents reported comfort in the transition process, but 5% or less reported completing one of the core transition outcomes: transition readiness assessment, portable medical summary, or written transition plan. These findings translated across other domains of respondents' lives. While many individuals with DS and their caregivers are aware of the transition process, there appears to be a disconnect between the introduction of transition concepts and an actualization of transition outcomes necessary for success.
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Affiliation(s)
- Jordan Seth VanZant
- Department of Pediatrics, UPMC Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania, USA
| | - Andrew A McCormick
- Down Syndrome Center of Western Pennsylvania, Pittsburgh, Pennsylvania, USA
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Shaw KL, Baldwin L, Heath G. 'A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care. J Child Health Care 2021; 25:305-319. [PMID: 32602355 DOI: 10.1177/1367493520936422] [Citation(s) in RCA: 14] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains suboptimal for many families. This study aimed to examine how parents understand and experience their caregiving role during their child's transition to adult services, to identify parents' needs, and to inform service improvements. Focus groups were undertaken with parents of young people with brittle asthma, osteogenesis imperfecta, or epilepsy. Data were analysed using interpretative phenomenological analysis. Participants (n = 13) described how their parenting roles extended beyond what they consider usual in adolescence. These roles were presented as time consuming, stressful, and unrelenting but necessary to protect children from harm in the face of multiple risks and uncertainties. Such protective strategies were also perceived to hinder adolescent development, family functioning, and their own development as midlife adults. Finding a balance between protecting immediate health and long-term well-being was a major theme. Participants called for improved support, including improved service organization. Recommendations are provided for working with parents and young people to manage the risks and uncertainties associated with their condition, as part of routine transitional care.
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Affiliation(s)
- Karen L Shaw
- Institute of Applied Health Research, 1724University of Birmingham, UK
| | - Lydia Baldwin
- College of Medical and Dental Sciences, 1724University of Birmingham, UK
| | - Gemma Heath
- Institute of Human Sciences, 8695University of Wolverhampton, UK
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Nadarajah A, Dimitropoulos G, Grant C, Webb C, Couturier J. Impending Transition From Pediatric to Adult Health Services: A Qualitative Study of the Experiences of Adolescents With Eating Disorders and Their Caregivers. Front Psychiatry 2021; 12:624942. [PMID: 34122164 PMCID: PMC8187588 DOI: 10.3389/fpsyt.2021.624942] [Citation(s) in RCA: 9] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/01/2020] [Accepted: 04/22/2021] [Indexed: 02/04/2023] Open
Abstract
Background: There is a dearth of research that identifies pediatric to adult health care transition practices that yield positive outcomes for young people with eating disorders (EDs). Further, adolescent and caregiver perspectives are poorly understood and underrepresented in the literature. The purpose of this study, focused on the impending transition from pediatric to adult health services, was twofold: (a) to identify adolescent and caregiver perspectives of barriers and facilitators of a successful transition for adolescents with EDs; and (b) to understand adolescent and caregiver suggestions of interventions for a successful transition. Design/Method: We recruited five adolescents with EDs who were about to be transferred out of pediatric care as well as their caregivers. We conducted a qualitative study in accordance with the principles of interpretive description. Through conducting semi-structured, in-depth interviews with adolescents and caregivers, we investigated their knowledge about health system transitions and anticipated experiences. We identified participants' perceptions of barriers and facilitators regarding a successful transition, as well as their recommendations to improve the transfer of care. Results: Participants possessed a limited understanding of transition processes despite the fact that they were about to be transferred to adult care. From our analyses, the following themes were identified as barriers during the transition process: re-explaining information to adult healthcare providers, lack of professional support while waiting for uptake into the adult health system, and late timing of transition of care discussions. Both adolescents and caregivers expressed that involvement of parents and the pediatric healthcare team helped to facilitate a successful transfer of care. In addition, participants expressed that the implementation of a Transition Coordinator and Transition Passport would be helpful in facilitating a seamless transfer between systems of care. Discussion: These findings demonstrate a significant gap in the system and highlight the importance of developing interventions that facilitate a successful transition. The themes that emerged from this study can inform the development of interventions to facilitate a coordinated transition from pediatric to adult health services for adolescents with EDs.
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Affiliation(s)
| | | | - Christina Grant
- Department of Pediatrics, McMaster Children's Hospital, Hamilton, ON, Canada
| | - Cheryl Webb
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada
| | - Jennifer Couturier
- Department of Pediatrics, McMaster Children's Hospital, Hamilton, ON, Canada
- Department of Psychiatry and Behavioural Neurosciences, McMaster University, Hamilton, ON, Canada
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Does Parenting Style Affect Adolescent IBD Transition Readiness and Self-Efficacy Scores? CHILDREN-BASEL 2021; 8:children8050367. [PMID: 34064470 PMCID: PMC8147961 DOI: 10.3390/children8050367] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 03/28/2021] [Revised: 04/21/2021] [Accepted: 04/27/2021] [Indexed: 11/22/2022]
Abstract
Background: Transition to adult-centered care requires adolescents with inflammatory bowel disease (IBD) to acquire a set of independent self-management skills. Transition success can be affected by maturity, cognitive development, and many other factors. Our hypothesis was that parenting style would be associated with increased self-efficacy and therefore transitions readiness. Methods: A prospective cohort survey study of adolescents with IBD and their parents from October 2018 to October 2019 was performed. Participants completed the IBD-Self-Efficacy Scale- Adolescent questionnaire (IBD-SES-A) and the Transition Readiness Assessment Questionnaire (TRAQ). Parents completed the Parent Styles and Dimensions Questionnaire (PSDQ-short form). Demographic and disease information were also collected. Results: Sixty-nine participants were included for full analysis (36 males and 33 females); mean age was 18.2 years, and average age of IBD diagnosis 13 years. Overall, 83% of participants were non-Hispanic Caucasian, and 84% reported parental annual income over USD 100,000. All 69 parents reported an authoritative parenting style. Females have significantly higher TRAQ scores than males (p = 0.0004). TRAQ scores differed significantly between age groups, with 20 to 22 years old having higher scores (p ≤ 0.0001). TRAQ and IBD-SES-A scores did not differ by parental education or parenting style. Conclusion: Given the inability to delineate different parenting, this study was unable to demonstrate a protective parenting style associated with better transitions readiness and self-efficacy scores in adolescents with IBD. Within the context of authoritative parenting, we did find that females and older adolescents had higher transition readiness scores. Additional research into psychosocial determinants of transition readiness, and the importance of multidisciplinary management with an integrated team including psychologist and social workers, can help improve IBD transition outcomes.
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Roberts JE, Halyabar O, Petty CR, Son MB. Assessing preparation for care transition among adolescents with rheumatologic disease: a single-center assessment with patient survey. Pediatr Rheumatol Online J 2021; 19:61. [PMID: 33933123 PMCID: PMC8088202 DOI: 10.1186/s12969-021-00544-y] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/23/2020] [Accepted: 04/14/2021] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Despite the risk for poor outcomes and gaps in care in the transfer from pediatric to adult care, most pediatric rheumatology centers lack formal transition pathways. As a first step in designing a pathway, we evaluated preparation for transition in a single-center cohort of adolescents and young adults (AYA) with rheumatologic conditions using the ADolescent Assessment of Preparation for Transition (ADAPT) survey. FINDINGS AYA most frequently endorsed receiving counseling on taking charge of their health and remembering to take medications. Less than half reported receiving specific counseling about transferring to an adult provider. AYA with lower education attainment compared with those who had attended some college or higher had lower scores in self-management (1.51 vs 2.52, p = 0.0002), prescription medication counseling (1.96 vs 2.41, p = 0.029), and transfer planning (0.27 vs 1.62, p < 0.001). AYA with a diagnosis of MCTD, Sjögren's or SLE had higher self-management scores than those with other diagnoses (2.6 vs 1.9; p = 0.048). Non-white youth indicated receiving more thorough medication counseling than white youth (2.71 vs 2.07, p = 0.027). When adjusting for age, educational attainment remained an independent predictor of transfer planning (p = 0.037). AYA with longer duration of seeing their physician had higher transition preparation scores (p = 0.021). CONCLUSION Few AYA endorsed receiving comprehensive transition counseling, including discussion of transfer planning. Those who were younger and with lower levels of education had lower preparation scores. A long-term relationship with providers was associated with higher scores. Further research, including longitudinal assessment of transition preparation, is needed to evaluate effective processes to assist vulnerable populations.
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Affiliation(s)
- Jordan E. Roberts
- grid.2515.30000 0004 0378 8438Division of Immunology, Boston Children’s Hospital, Harvard Medical School, Boston, Massachusetts USA
| | - Olha Halyabar
- grid.2515.30000 0004 0378 8438Division of Immunology, Boston Children’s Hospital, Harvard Medical School, Boston, Massachusetts USA
| | - Carter R. Petty
- grid.2515.30000 0004 0378 8438Institutional Centers for Clinical and Translational Research, Boston Children’s Hospital, Boston, Massachusetts USA
| | - Mary Beth Son
- grid.2515.30000 0004 0378 8438Division of Immunology, Boston Children’s Hospital, Harvard Medical School, Boston, Massachusetts USA
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Garney W, Wilson K, Ajayi KV, Panjwani S, Love SM, Flores S, Garcia K, Esquivel C. Social-Ecological Barriers to Access to Healthcare for Adolescents: A Scoping Review. INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH 2021; 18:4138. [PMID: 33919813 PMCID: PMC8070789 DOI: 10.3390/ijerph18084138] [Citation(s) in RCA: 40] [Impact Index Per Article: 10.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 03/23/2021] [Revised: 04/11/2021] [Accepted: 04/12/2021] [Indexed: 11/17/2022]
Abstract
Access to healthcare for adolescents is often overlooked in the United States due to federal and state-sponsored insurance programs such as Medicaid and the Children's Health Insurance Program. While these types of programs provide some relief, the issue of healthcare access goes beyond insurance coverage and includes an array of ecological factors that hinder youths from receiving services. The purpose of this scoping review was to identify social-ecological barriers to adolescents' healthcare access and utilization in the United States. We followed the PRISMA and scoping review methodological framework to conduct a comprehensive literature search in eight electronic databases for peer-reviewed articles published between 2010 and 2020. An inductive content analysis was performed to thematize the categories identified in the data extraction based on the Social-Ecological Model (SEM). Fifty studies were identified. Barriers across the five SEM levels emerged as primary themes within the literature, including intrapersonal-limited knowledge of and poor previous experiences with healthcare services, interpersonal-cultural and linguistic barriers, organizational-structural barriers in healthcare systems, community-social stigma, and policy-inadequate insurance coverage. Healthcare access for adolescents is a systems-level problem requiring a multifaceted approach that considers complex and adaptive behaviors.
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Affiliation(s)
- Whitney Garney
- Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA; (K.W.); (K.V.A.); (S.P.); (S.M.L.); (S.F.); (K.G.); (C.E.)
- Laboratory for Community Health Evaluation and Systems Science (CHESS), Texas A&M University, College Station, TX 77843, USA
| | - Kelly Wilson
- Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA; (K.W.); (K.V.A.); (S.P.); (S.M.L.); (S.F.); (K.G.); (C.E.)
| | - Kobi V. Ajayi
- Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA; (K.W.); (K.V.A.); (S.P.); (S.M.L.); (S.F.); (K.G.); (C.E.)
- Laboratory for Community Health Evaluation and Systems Science (CHESS), Texas A&M University, College Station, TX 77843, USA
- Education, Direction, Empowerment, & Nurturing (EDEN) Foundation, Abuja 900211, Nigeria
| | - Sonya Panjwani
- Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA; (K.W.); (K.V.A.); (S.P.); (S.M.L.); (S.F.); (K.G.); (C.E.)
- Laboratory for Community Health Evaluation and Systems Science (CHESS), Texas A&M University, College Station, TX 77843, USA
| | - Skylar M. Love
- Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA; (K.W.); (K.V.A.); (S.P.); (S.M.L.); (S.F.); (K.G.); (C.E.)
- Laboratory for Community Health Evaluation and Systems Science (CHESS), Texas A&M University, College Station, TX 77843, USA
| | - Sara Flores
- Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA; (K.W.); (K.V.A.); (S.P.); (S.M.L.); (S.F.); (K.G.); (C.E.)
- Laboratory for Community Health Evaluation and Systems Science (CHESS), Texas A&M University, College Station, TX 77843, USA
| | - Kristen Garcia
- Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA; (K.W.); (K.V.A.); (S.P.); (S.M.L.); (S.F.); (K.G.); (C.E.)
- Laboratory for Community Health Evaluation and Systems Science (CHESS), Texas A&M University, College Station, TX 77843, USA
| | - Christi Esquivel
- Department of Health and Kinesiology, Texas A&M University, College Station, TX 77843, USA; (K.W.); (K.V.A.); (S.P.); (S.M.L.); (S.F.); (K.G.); (C.E.)
- Laboratory for Community Health Evaluation and Systems Science (CHESS), Texas A&M University, College Station, TX 77843, USA
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Butalia S, Crawford SG, McGuire KA, Dyjur DK, Mercer JR, Pacaud D. Improved transition to adult care in youth with type 1 diabetes: a pragmatic clinical trial. Diabetologia 2021; 64:758-766. [PMID: 33439284 DOI: 10.1007/s00125-020-05368-1] [Citation(s) in RCA: 24] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/11/2020] [Accepted: 11/04/2020] [Indexed: 10/22/2022]
Abstract
AIMS/HYPOTHESIS Youth with type 1 diabetes are at high risk for loss to follow-up during the transition from paediatric to adult diabetes care. Our aim was to assess the effect of a communication technology enhanced transition coordinator intervention compared with usual care on clinic attendance among transitioning youth with type 1 diabetes. METHODS In this open label, pragmatic clinical trial of youth with type 1 diabetes, aged 17-18 years, transitioning from paediatric to adult diabetes care, the intervention group received support from a transition coordinator who used communication technology and the control group received usual care. The primary outcome was the proportion of individuals that did not attend at least one routine clinic visit in adult diabetes care within 1 year after transfer. Secondary outcomes included diabetes-related clinical outcomes and quality of life measures. RESULTS There were no baseline differences in age, sex, HbA1c and number of follow-up visits, emergency department visits and diabetic ketoacidosis admissions in the 1 year prior to transition between the usual care (n = 101) and intervention (n = 102) groups. In the year following transfer, 47.1% in the usual care group vs 11.9% in the intervention group did not attend any outpatient diabetes appointments (p < 0.01). There were no differences in glycaemic control or diabetic ketoacidosis post transfer. CONCLUSIONS/INTERPRETATION Our intervention was successful in improving clinic attendance among transitioning youth with type 1 diabetes. Importantly, this programme used simple, readily accessible communication technologies, which increases the sustainability and transferability of this strategy. TRIAL REGISTRATION isrctn.org ISRCTN13459962.
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Affiliation(s)
- Sonia Butalia
- Division of Endocrinology and Metabolism, Department of Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
- Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
- O'Brien Institute for Public Health, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
- Libin Cardiovascular Institute, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada.
| | | | - K Ashlee McGuire
- Provincial Primary Health Care, Alberta Health Services, Calgary, AB, Canada
- Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
| | - David K Dyjur
- Diabetes Centre Calgary, Alberta Health Services, Calgary, AB, Canada
| | - Julia R Mercer
- Alberta Children's Hospital, Diabetes Clinic, Alberta Health Services, Calgary, AB, Canada
| | - Danièle Pacaud
- Division of Pediatric Endocrinology and Diabetes, Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
- Alberta Children's Hospital Research Institute, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
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41
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Williams S, Shulman R, Allwood Newhook LA, Power H, Guttmann A, Smith S, Knight J, Chafe R. A province wide review of transition practices for young adult patients with type 1 diabetes. J Eval Clin Pract 2021; 27:111-118. [PMID: 32307818 DOI: 10.1111/jep.13399] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/02/2020] [Revised: 03/17/2020] [Accepted: 03/22/2020] [Indexed: 11/29/2022]
Abstract
RATIONALE, AIMS, AND OBJECTIVES Many studies on the transition from paediatric to adult care focus on practices within a single institution or program. We examine the transition for young adults with type 1 diabetes across an entire Canadian province with a small, mostly rural population and high rates of type 1 diabetes: Newfoundland and Labrador (NL). Our aim is to determine how transition is occurring across the jurisdiction and identify methods for improving clinical services for paediatric patients with a chronic condition during their move into adult care. METHODS A provincial diabetes database and hospital admission data were reviewed for a cohort of young adults with type 1 diabetes who transitioned into adult care. Semi-structured interviews were conducted with paediatric and adult diabetes providers. RESULTS Between 2008 and 2013, 93 patients with type 1 diabetes transitioned into adult care. Rates of diabetes-related hospitalizations increased from 15.6/100 person-years in the 3 years before their 18th birthday to 16.7/100 person-years in the three-year period after. Between 2017 and 2019, 15 interviews were conducted across the province's four regional health authorities. Various models of transition care are being employed, reflecting staff and resource availability in different centres. While no formal transition program was identified in either region, some providers, particularly in rural areas, reported being comfortable with their current transition practices. Suggested improvements included more structured processes, shared educational resources, expanding the role played by primary care physicians, and a dedicated transfer clinic. CONCLUSIONS We found different approaches for transitioning patients with diabetes into adult care across NL. Yet this variation may not negatively impact patient outcomes, particularly in rural areas. The approach we employed of combining reviews of administration data with a detailed analysis of current processes could be employed in other jurisdictions to identify appropriate quality improvement initiatives.
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Affiliation(s)
- Sarah Williams
- Faculty of Medicine, Memorial University of Newfoundland and Labrador, St. John's, Canada
| | - Rayzel Shulman
- Hospital for Sick Children, Toronto, Canada.,Institute for Clinical and Evaluative Sciences, Toronto, Canada.,University of Toronto, Toronto, Canada
| | - Leigh Anne Allwood Newhook
- Faculty of Medicine, Memorial University of Newfoundland and Labrador, St. John's, Canada.,Children's and Women's Health, Eastern Health, St. John's, Canada
| | - Heather Power
- Children's and Women's Health, Eastern Health, St. John's, Canada
| | - Astrid Guttmann
- Hospital for Sick Children, Toronto, Canada.,Institute for Clinical and Evaluative Sciences, Toronto, Canada.,University of Toronto, Toronto, Canada
| | - Sharon Smith
- Faculty of Medicine, Memorial University of Newfoundland and Labrador, St. John's, Canada
| | - John Knight
- Faculty of Medicine, Memorial University of Newfoundland and Labrador, St. John's, Canada
| | - Roger Chafe
- Faculty of Medicine, Memorial University of Newfoundland and Labrador, St. John's, Canada
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Arvanitis M, Hart LC, DeWalt DA, Díaz-González de Ferris ME, Sawicki GS, Long MD, Martin CF, Kappelman MD. Transition Readiness Not Associated With Measures of Health in Youth With IBD. Inflamm Bowel Dis 2021; 27:49-57. [PMID: 32109284 PMCID: PMC8427709 DOI: 10.1093/ibd/izaa026] [Citation(s) in RCA: 17] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/27/2020] [Indexed: 12/11/2022]
Abstract
BACKGROUND It remains unclear how transition readiness is associated with various domains of health in children and young adults. Our objective was to describe the transition readiness of children and young adults with inflammatory bowel disease (IBD) and examine its associations with demographic factors, IBD activity, and measures of physical, psychological, and social health. METHODS We recruited children ages 12 to 17 and young adults ages 18 to 20 from 2 internet-based cohorts sponsored by the Crohn's & Colitis Foundation. Participants self-reported demographics, IBD activity, transition readiness, health-related quality of life, and Patient-Reported Outcomes Information Systems domains of physical, psychological, and social health. RESULTS Among 361 pediatric and 119 adult participants, age and female sex were associated with transition readiness. The association was greater in the pediatric cohort. Having IBD in remission was associated with worse transition readiness in the pediatric cohort only (beta = 0.3; P = 0.003). Health-related quality of life and Patient-Reported Outcomes Information Systems measures of fatigue, pain interference, and sleep disturbance were not associated with transition readiness in either children or adults. We observed few small associations between psychological or social health and transition readiness. Better transition readiness was associated with greater anxiety in adults (beta = -0.02; P = 0.02) and greater peer relationships among children (beta = 0.01; P = 0.009). CONCLUSIONS In children and young adults with IBD, transition readiness was associated with older age and female sex. Associations between transition readiness and physical, psychological, and social health were either small, inconsistent across age groups, or nonexistent.
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Affiliation(s)
- Marina Arvanitis
- Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
- Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
| | - Laura C Hart
- Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
- Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
| | - Darren A DeWalt
- Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
| | | | - Gregory S Sawicki
- Department of Pediatrics, Boston Children’s Hospital, Boston, Massachusetts, USA
| | - Millie D Long
- Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
| | - Christopher F Martin
- Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
| | - Michael D Kappelman
- Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
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Abstract
Without a structure to address healthcare transition, adolescents and young adults with neurological disorders are likely to have disruptions in their care that result in a higher need for emergency care and hospitalization. There are numerous obstacles to implementing the existing transition guidelines: adequate numbers of skilled and willing adult providers, patient and family anxiety about transfer, changes in health insurance, inadequate reimbursement, and inefficient communication systems to pave the path for a smooth transition. The aim of this article is to provide practical information about developing a transition program, as well as a potential clinical model for transitioning care.
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Affiliation(s)
- Mary L Zupanc
- Department of Neurology and Pediatrics, Pediatric Comprehensive Epilepsy Program, University of California-Irvine, Children's Hospital of Orange County, Orange, CA..
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44
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Seaborg K, Faltersack K, Felton EA. Transition of Care for Adolescent and Young Adult Patients on Dietary Therapy for Epilepsy. JOURNAL OF PEDIATRIC EPILEPSY 2020. [DOI: 10.1055/s-0040-1716550] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/23/2022]
Abstract
AbstractKetogenic diets are high-fat, low-carbohydrate diets designed to alter metabolism, induce nutritional ketosis, and reduce seizures in patients with epilepsy. In the past 15 to 20 years, the diets have been refined, gaining momentum in the treatment of resistant epilepsy. As ketogenic diets have gained popularity for treatment of pediatric epilepsies, an increasing number of adolescents treated with dietary therapy are approaching the age of transitioning their care to adult providers. Transition of care for this vulnerable population brings unique challenges posed by a paucity of adult providers who prescribe ketogenic diets, a lack of adult nutritionists trained in dietary therapy for epilepsy, and reluctance of pediatric patients to transition care. In this article, we will discuss the rationale for establishing transition protocols for young adult patients with epilepsy and present guidelines for transition of care for patients treated with dietary therapy for epilepsy.
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Affiliation(s)
- Kristin Seaborg
- Department of Neurology, University of Wisconsin–Madison, Madison, Wisconsin, United States
| | - Kelly Faltersack
- UW Health - Department of Clinical Nutrition Services, University of Wisconsin–Madison, Madison, Wisconsin, United States
| | - Elizabeth A. Felton
- Department of Neurology, University of Wisconsin–Madison, Madison, Wisconsin, United States
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Understanding Barriers to Access and Utilization of Developmental Disability Services Facilitating Transition. J Dev Behav Pediatr 2020; 41:680-689. [PMID: 32833872 DOI: 10.1097/dbp.0000000000000840] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/25/2022]
Abstract
OBJECTIVE To explore the barriers faced by parents of individuals with intellectual and developmental disabilities when obtaining and using Developmental Disability Services (DDS) to support adolescent transition. METHODS The authors conducted a basic interpretive qualitative study using semistructured interviews. Interviews were manually coded by the team of university-based researchers using constant comparative analysis. The codes were grouped into themes. Thematic saturation occurred after 18 interviews with parents (n = 10) and service coordinators for DDS (n = 8). RESULTS Barriers to DDS enrollment included emotional and administrative burden, fear of invasion of privacy, lack of a qualifying diagnosis, difficulties in accessing information about services, and misinformation about services. Barriers to DDS use once enrolled were difficulty in finding/hiring direct support professionals, high turnover of direct support professionals, and lack of training and skill among direct support professionals. Participants also noted high turnover among service coordinators, further administrative burden from hiring direct support professionals, and required home visits by service coordinators as additional barriers to service use. Participants reported benefits of DDS including increased inclusion for clients in the community, the use of person-centered skill building, and access to respite care and system navigation support. CONCLUSION Although all participants reported benefits of acquiring services, there are significant barriers to acquiring and maintaining these services. Recommendations based on these barriers are provided for DDS, federal policy makers, and local support professionals along with a toolkit of potential strategies to support families.
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Seaborg K, Wang X, Olson C, Felton EA. Pediatric to Adult Transitions of Ketogenic Dietary Therapy for Epilepsy. J Child Neurol 2020; 35:896-900. [PMID: 32698640 PMCID: PMC9927826 DOI: 10.1177/0883073820938587] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
Ketogenic therapy is now an accepted treatment for pediatric and adult patients with medically refractory epilepsy.1-3 However, young adults treated with a ketogenic diet face unique challenges when transitioning to adult neurology providers.4 The variable acceptance of dietary therapy, paucity of nutritionists and adult neurology providers educated in dietary therapy, and lack of insurance coverage for dietary education may interfere with transition to adult care. In addition, patients in this life stage may just begin to independently seek medical care, cook meals, and manage medications, making strict dietary limitations difficult.4 In this worldwide study, we surveyed 191 pediatric and adult neurology providers who prescribe ketogenic dietary therapy for epilepsy. Our response rate was 39% with a total of 74 valid surveys received. Our goal was to identify perceived barriers that inhibit effective transition and successful continuation of dietary therapy during transition to adult care. We found that dietary therapy is a more accepted treatment of intractable epilepsy in children (84%) than adults (17%) in all geographic areas. Although half of pediatric neurology providers (50%) transition their young adult patients on dietary therapy to adult providers, only 23% have a documented transition plan or a formal transition protocol. Most (87%) pediatric providers who prescribe the ketogenic diet feel the lack of sufficient adult providers who prescribe dietary therapy as a barrier to transitioning adolescent and young adult patients.
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Affiliation(s)
- Kristin Seaborg
- Department of Neurology, University of Wisconsin–Madison, Madison, WI, USA
| | - Xing Wang
- Department of Biostatistics and Medical Informatics, University of Wisconsin–Madison, Madison, WI, USA
| | - Clara Olson
- University of Wisconsin–Madison, Madison, WI, USA
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Le Roux E, Mellerio H, Jacquin P, Bourmaud A, Guilmin-Crépon S, Faye A, Matheron S, Boulkedid R, Alberti C. Practical generic guidelines for paediatric-to-adult transition for adolescents with chronic disease. Eur J Public Health 2020; 29:442-448. [PMID: 30535247 DOI: 10.1093/eurpub/cky258] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/14/2022] Open
Abstract
BACKGROUND The last 20 years have seen many attempts to improve transition to adult healthcare for adolescents with chronic disease, but there is currently no established consensus on generic practices. Our goal was to identify relevant and pragmatic guidelines for transition practice for each step of this process (before, during and after transfer), applicable to a wide range of chronic illnesses and health services, via a participatory approach involving all the key stakeholders. METHODS We conducted interviews and a literature review to elaborate a questionnaire for use in an online 2-round Delphi survey. The survey panel included 36 French health and social professionals from different care settings, and young adults and parents with an experience of healthcare transition related to all types of chronic disease. RESULTS The survey consensus identified 19 items on feasibility and relevance criteria, which form the guidelines. It is composed of five practices to be adopted during preparation in paediatrics, seven practices in the active phase of transition and seven in adult care. Two guidelines achieved complete consensus: having a longer consultation for the first appointment with the adult doctor, and keeping the same adult doctor throughout follow-up. A further 36 items met the criterion of relevance, but were deemed unfeasible. CONCLUSIONS Taking into account all stakeholder views and the real-world applicability of care practices enabled us to elaborate consensual guidelines whose implementation requires no additional health service resources.
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Affiliation(s)
- Enora Le Roux
- Unité ECEVE UMR 1123, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France
| | - Hélène Mellerio
- Unité ECEVE UMR 1123, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France
| | - Paul Jacquin
- Service de Médecine de l'Adolescent, Assistance Publique-Hôpitaux de Paris, Hôpital Robert Debré, Paris, France
| | - Aurélie Bourmaud
- Unité ECEVE UMR 1123, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France.,CIC-EC, Unité INSERM CIC 1426, Assistance Publique-Hôpitaux de Paris, Hôpital Robert Debré, Paris, France
| | - Sophie Guilmin-Crépon
- Unité ECEVE UMR 1123, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France.,CIC-EC, Unité INSERM CIC 1426, Assistance Publique-Hôpitaux de Paris, Hôpital Robert Debré, Paris, France
| | - Albert Faye
- Unité ECEVE UMR 1123, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France.,Service de Pédiatrie Générale, Assistance Publique-Hôpitaux de Paris, Hôpital Robert Debré, Paris, France
| | - Sophie Matheron
- Unité IAME UMR 1137, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France.,Service des Maladies Infectieuses et Tropicales, Assistance Publique-Hôpitaux de Paris, Hôpital Bichat, Paris, France
| | - Rym Boulkedid
- Unité ECEVE UMR 1123, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France.,CIC-EC, Unité INSERM CIC 1426, Assistance Publique-Hôpitaux de Paris, Hôpital Robert Debré, Paris, France
| | - Corinne Alberti
- Unité ECEVE UMR 1123, Université Paris Diderot-Sorbonne Paris Cité, INSERM, Paris, France.,CIC-EC, Unité INSERM CIC 1426, Assistance Publique-Hôpitaux de Paris, Hôpital Robert Debré, Paris, France
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Hodnekvam K, Iversen HH, Brunborg C, Skrivarhaug T. Development and validation of a questionnaire to assess young patients' experiences with diabetes care and transition. Acta Paediatr 2020; 109:2057-2066. [PMID: 31998990 DOI: 10.1111/apa.15205] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/18/2019] [Revised: 01/05/2020] [Accepted: 01/28/2020] [Indexed: 11/27/2022]
Abstract
AIM To describe the development and validation of a questionnaire in a national Norwegian population-based cohort study designed to assess the experiences of young people with type 1 diabetes who had made the transition from paediatric to adult diabetes care. METHODS The questionnaire was developed by the authors based on literature searches, focus group interviews, discussions with experts and cognitive interviews. We included 776 individuals with type 1 diabetes who were last registered in the Norwegian Childhood Diabetes Registry between 2009 and 2012 and had been receiving adult health care for at least 2 years. The data quality was analysed, factor analysis was performed, and the internal reliability, test-retest reliability and construct validity were determined. RESULTS The response rate was 321 patients (41.4%); 57.6% were female, and the average age at recruitment was 22.9 ± 1.2 years. Seven factors were identified. Satisfactory evidence was provided for the internal consistency, reliability and construct validity of the questionnaire. All scales met the criterion of Cronbach's alpha above 0.4. The test-retest correlations ranged from 0.64 to 0.92. CONCLUSION The thorough validation of the questionnaire proved satisfactory and indicated that it may be of value for further studies measuring patients' experiences with diabetes care and transition.
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Affiliation(s)
- Kristin Hodnekvam
- Department of Paediatric and Adolescent Medicine Telemark Hospital Skien Norway
- Norwegian Childhood Diabetes Registry Oslo University Hospital Oslo Norway
| | | | - Cathrine Brunborg
- Oslo Centre for Biostatistics and Epidemiology Research Support Services Oslo Norway
| | - Torild Skrivarhaug
- Division of Paediatric and Adolescence Medicine Oslo University Hospital Oslo Norway
- Oslo Diabetes Research Centre Oslo University Hospital Oslo Norway
- Institute of Clinical Medicine University of Oslo Oslo Norway
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49
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Butalia S, McGuire KA, Dyjur D, Mercer J, Pacaud D. Youth with diabetes and their parents' perspectives on transition care from pediatric to adult diabetes care services: A qualitative study. Health Sci Rep 2020; 3:e181. [PMID: 32782975 PMCID: PMC7410016 DOI: 10.1002/hsr2.181] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/30/2020] [Revised: 06/28/2020] [Accepted: 07/09/2020] [Indexed: 12/19/2022] Open
Abstract
BACKGROUND AND AIMS When youth with diabetes transition from pediatric to adult diabetes care, they are at high risk for loss to follow up and worsening glucose control. We aimed to gain insight on how to improve the transition of youth with type 1 diabetes from pediatric to adult diabetes care from the patients' and parents' perspective. METHODS We conducted focus groups in youth with type 1 diabetes in transition from pediatric to adult diabetes care and their parents, in Calgary, Alberta, between June and August 2014. Eligibility criteria included: (a) type 1 diabetes; (b) aged 15 to 25 years; (c) have or had received care at the pediatric hospital; and, (d) either pre or post-transfer; or, (e) parents of recently transferred youth. Purposive sampling was used, and the theoretical framework used was the Integrated Behaviour Model. Participants were asked about positive, negative, or challenging experiences related to diabetes and transition, solutions to challenges, and tools and strategies to improve and better support transition. Thematic analysis was conducted after focus groups were recorded and transcribed. RESULTS Three focus groups were conducted: pre-transfer youth with diabetes (4 females and 3 males; median age 17.5 years, IQR 1.3 years); post-transfer young adults with diabetes (2 females and 2 males; median age 23.5 years, IQR 1.2 years); and parents of recently transferred young adults with diabetes (n = 3). Main themes were: (a) communication technology; (b) the need for more transition and diabetes education and preparation during transition; and, (c) the importance and need for social and peer support. CONCLUSION This study describes specific areas that may improve diabetes transfer and transition from pediatric to adult diabetes care. This information can help inform clinical care delivery for transition and the development of programs, strategies, and interventions to improve transition care.
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Affiliation(s)
- Sonia Butalia
- Division of Endocrinology and Metabolism, Department of Medicine, Cumming School of MedicineUniversity of CalgaryCalgaryAlbertaCanada
- Department of Community Health Sciences, Cumming School of MedicineUniversity of CalgaryCalgaryAlbertaCanada
- O'Brien Institute for Public Health, Cumming School of Medicine, CalgaryUniversity of CalgaryCalgaryAlbertaCanada
- Libin Cardiovascular Institute, Cumming School of MedicineUniversity of CalgaryCalgaryAlbertaCanada
| | - K. Ashlee McGuire
- Provincial Primary Health CareAlberta Health ServicesCalgaryAlbertaCanada
- Department of Family Medicine, Cumming School of MedicineUniversity of CalgaryCalgaryAlbertaCanada
| | - David Dyjur
- Diabetes Centre CalgaryAlberta Health ServicesCalgaryAlbertaCanada
| | - Julia Mercer
- Alberta Children's Hospital, Diabetes ClinicAlberta Health ServicesCalgaryAlbertaCanada
| | - Daniele Pacaud
- Division of Pediatric Endocrinology and Diabetes, Department of Pediatrics, Cumming School of MedicineUniversity of CalgaryCalgaryAlbertaCanada
- Alberta Children's Hospital Research Institute, Cumming School of MedicineUniversity of CalgaryCalgaryAlbertaCanada
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Robbins BW, McLaughlin S, Finn PW, Spencer AL, Coleman DL. Young Adults: Addressing the Health Needs of a Vulnerable Population. Am J Med 2020; 133:999-1002. [PMID: 32387083 DOI: 10.1016/j.amjmed.2020.04.005] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/09/2019] [Accepted: 04/27/2020] [Indexed: 10/24/2022]
Affiliation(s)
- Brett W Robbins
- Professor of Medicine and Pediatrics, Vice Chair for Education, Department of Medicine, Director, Medicine-Pediatrics Residency Program, University of Rochester, Rochester, NY.
| | - Suzanne McLaughlin
- Director, Medicine-Pediatrics Residency Program, Brown Medical School, Providence, RI
| | - Patricia W Finn
- Professor and Chair, Department of Medicine, Associate Dean for Strategic Initiatives, University of Illinois College of Medicine, Chicago
| | - Abby L Spencer
- Associate Professor of Medicine, Director, Internal Medicine Training Program, Vice Chair of Education-Medicine Institute, Cleveland Clinic, Cleveland, Ohio
| | - David L Coleman
- Professor and Chair, Department of Medicine, Boston University School of Medicine, Boston, Mass
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