Descriptive Analysis and Profile of Health Care Transition Services Provided to Adolescents and Emerging Adults in the Movin' On Up Health Care Transition Program

Betz, Cecily Lynn; Smith, Kathryn A.; Speybroeck, Alex Van; Jacobs, Robert A.; Rivera, Natalie; Lee, Jeannie; Saghhafi, Saba; Nguyen, Benjamin; Tu, Hao

doi:10.1016/j.pedhc.2017.11.006

Cited by 18 publications

(13 citation statements)

References 36 publications

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“…The majority of CPGs recommend a systematic formal transition process and good communication, while relatively few guidelines mentioned follow up and evaluation. However, research indicates that transfer to adult care is not always effective, hence follow up and evaluation post completed transition are particularly important [18,20,[69][70][71]. These processes are resource intensive, and to date the data on effectiveness of published programs remain limited.…”

Section: Discussionmentioning

confidence: 99%

Chronic illness and transition from paediatric to adult care: a systematic review of illness specific clinical guidelines for transition in chronic illnesses that require specialist to specialist transfer

Samarasinghe

Medlow

et al. 2020

Journal of Transition Medicine

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IntroductionA quarter of a century has passed since the importance of transition from paediatric to adult care for chronically ill adolescents was highlighted by the American Society of Adolescent Health and Medicine. Despite discussions, the development of generic guidelines and some cohorting of age groups in paediatric speciality care, adolescents continue, unacceptably, to fall through the care gaps with negative clinical outcomes. Government bodies and international organisations have developed clinical practice guidelines (CPGs) for specific chronic physical illness although it remains unclear as to what extent these discuss transition from paediatric to adult care. This study systematically reviewed scientific and grey literature to determine how effectively transition has been incorporated into chronic illness specific CPGs.MethodsFive bibliographical databases; Medline, Embase, PsycINFO, CINAHL and Web of Science plus an extensive grey literature search from the internet were used to identify published guidelines between 2008 and 2018 using key words adolescents, transition, guidelines, together with the names of over 20 chronic physical illnesses which require specialist to specialist care after transitioning from paediatric care. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed. In addition a measure of trustworthiness for CPGs was included. Guidelines were benchmarked against a published set of Australian transition principles embodying the comprehensive recommendations from National Institute for health and Care Excellence (NICE) transition guidelines discussing key transition aspects on: a systematic and formal transition process; early preparation; transition coordinators, good communication and collaboration between health professionals; individualised transition plan, enhancing self-management and active follow up after transition.ResultsInitially, 1055 articles were identified from the literature searches. Eight hundred and sixty eight articles were selected for title and abstract review. One hundred and seventy eight articles were included for full text review. Ultimately, 25 trustworthy CPGs were identified and included across 14 chronic physical illnesses. Five articles exclusively discussed illness specific transition recommendations and two included all the seven key transition principles. Three provided a minimal discussion of transition to adult care due to lack of high level evidence. Follow up and evaluation was the least addressed principle with recommendations in only seven CPGs.ConclusionsA limited number of chronic physical illnesses have illness specific CPGs that address transition from paediatric to adult care. The CPGs’ content emphasises the need for empirical data in order to develop quality transition recommendations for adolescents with chronic physical illness to ensure long term engagement and retention within health services.

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Section: Discussionmentioning

confidence: 99%

Chronic illness and transition from paediatric to adult care: a systematic review of illness specific clinical guidelines for transition in chronic illnesses that require specialist to specialist transfer

Samarasinghe

Medlow

et al. 2020

Journal of Transition Medicine

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“…In this study, we found that joint consultations between professionals from PC and AC are generally preferred over direct hand‐over transfer, and that having a dedicated transition coordinator is important in transitional care. This is confirmed in several other studies . A coordinator at both sites of transition helps to secure organizational and health care related issues, given the array of new services that were to be accessed .…”

Section: Discussionmentioning

confidence: 99%

“…This is confirmed in several other studies. [20][21][22] A coordinator at both sites of transition helps to secure organizational and health care related issues, given the array of new services that were to be accessed. 21 For successful transitional care, it also appears essential to address transition and self-management skills from an early age on.…”

Section: Discussionmentioning

confidence: 99%

Controlled evaluation of a transition clinic for Dutch young people with cystic fibrosis

Peeters

Sattoe

Staa

et al. 2019

Pediatric Pulmonology

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Background Transition clinics (TCs) are advocated as best practice to support young people with cystic fibrosis (CF) during transition to adulthood and adult care. We aimed to research the functioning of a TC for young people with CF compared with direct hand‐over care and to evaluate whether those treated at the TC have better transfer experiences and outcomes compared with the control group. Methods Mixed‐methods retrospective controlled design, including interviews with professionals, observations of clinics, chart reviews (at four measurement moments), and patient surveys. Qualitative data analysis focused on organization and daily routines, and barriers and facilitators experienced. Young people's transfer experiences, self‐management, health care use, and clinical outcomes were assessed quantitatively. Results The most notable feature distinguishing the TC and direct hand‐over care comprised joint consultations between pediatric and adult care professionals in the former. A transition coordinator was considered essential for the success of the TC. The main barriers were lack of time, planning, and reimbursement issues. Young people treated at the TC tended to have better transfer experiences and were more satisfied. They reported significantly more trust in their adult care professionals. Their self‐management‐related outcomes were less favorable. Conclusions The TC had several perceived benefits and showed positive trends in transfer experiences and satisfaction, but no differences in health‐related outcomes. Structured preparation of young people, joint consultations with pediatric and adult care professionals, and better coordination were perceived as facilitating elements. Further improvement demands solutions for organizational and financial barriers, and better embedding of self‐management interventions in CF care.

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“…Thus, transition interventions focused on developmental characteristics and tasks are crucial; additionally, a comprehensive care model is needed to support AYAs to realize their goals and dreams for the future (Betz et al, 2018). However, so far, extensive recommendations for the transition of AYAs with special healthcare needs have been based mainly on expert opinion (Squiers, 2017).…”

Section: Lindsay Et Al (2016)mentioning

confidence: 99%

Transition programs for adolescents and young adults with spina bifida: A mixed‐methods systematic review

Choi

Bae

Jang

2020

Journal of Advanced Nursing

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Spina bifida (SB) is one of the most common congenital malformations. It is caused by a failed closure of one or more vertebrae during the early weeks of gestation and results in significant neurological impairment at or below the lesion site (Copp et al., 2015). SB is the most complex of the congenital disorders that infants are expected to survive (Phillips et al., 2017); approximately 85% of individuals with SB are expected to survive to adulthood owing to medical advances (Spina Bifida Association, 2018). However, despite the advances in medical care and treatment, patients with SB continue to experience a range of functional impairments in areas such as walking and voluntary bowel and bladder control (Şahiṅ et al., 2014).

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Descriptive Analysis and Profile of Health Care Transition Services Provided to Adolescents and Emerging Adults in the Movin' On Up Health Care Transition Program

Cited by 18 publications

References 36 publications

Chronic illness and transition from paediatric to adult care: a systematic review of illness specific clinical guidelines for transition in chronic illnesses that require specialist to specialist transfer

Chronic illness and transition from paediatric to adult care: a systematic review of illness specific clinical guidelines for transition in chronic illnesses that require specialist to specialist transfer

Controlled evaluation of a transition clinic for Dutch young people with cystic fibrosis

Transition programs for adolescents and young adults with spina bifida: A mixed‐methods systematic review

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