Improving the transition between paediatric and adult healthcare: a systematic review
Abstract
Introduction The transition between paediatric and adult care for young people with chronic illness or disability is often poorly managed, with adverse consequences for health. Although many agree that adolescent services need to be improved, there is little empirical data on which policies can be based. Objectives To systematically review the evidence of effectiveness of transitional care programmes in young people aged 11-25 with chronic illness (physical or mental) or disability, and identify their successful components. Design A systematic literature review in July 2010 of studies which consistently evaluated health outcomes following transition programmes, either by comparison with a control group or by measurement pre-intervention and post-intervention. Results 10 studies met the inclusion criteria, six of which showed statistically significant improvements in outcomes. Descriptive analysis identified three broad categories of intervention, directed at: the patient (educational programmes, skills training); staffing (named transition co-ordinators, joint clinics run by paediatric and adult physicians); and service delivery (separate young adult clinics, out of hours phone support, enhanced follow-up). The conditions involved varied (eg, cystic fibrosis, diabetes mellitus), and outcome measures varied accordingly. All six interventions that resulted in significant improvements were in studies of patients with diabetes mellitus, with glycosylated haemoglobin level, acute…
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A systematic review of the literature on the transfer of care among different chronic diseases suggested that the most commonly used strategies in successful programmes were patient education and specific transition clinics jointly staffed by paediatric and adult physicians or dedicated young adult clinics within adult services.
“A systematic review of the literature on the transfer of care among different chronic diseases suggested that the most commonly used strategies in successful programmes were patient education and specific transition clinics jointly staffed by paediatric and adult physicians or dedicated young adult clinics within adult services (156).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [156]
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“…on the transfer of care among different chronic diseases suggested that the most commonly used strategies in successful programs were patient education and specific transition clinics jointly staffed by pediatric and adult physicians or dedicated young adult clinics within adult services (156).”
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“These were chosen on the basis of being recommended in recent guidance [4], identified as beneficial in a systematic review [11, 14], and following our own analysis of individual studies (Table two in Colver et al.”
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“Despite the wide number of transition programs that have been recently developed, there is a paucity of research on their effectiveness (2, 13, 14).”
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“A systematic review of several transition studies concluded that the most commonly used strategies in successful transition processes were patient education and specific transition clinics.(14) With improvement in CF care almost half the patient population is reaching adulthood.”
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MethodHealth system strategies supporting transition to adult care
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BackgroundThe Role of Grit in College Student Health Care Management Skills and Health-Related Quality of Life
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“This shift is critical when youth enter adult healthcare services where they are expected to take on responsibility for their medical needs (Crowley et al. 2011; Kraus de Camargo 2011; Modi et al. 2011; McDoungall et al. 2015).”
BackgroundTRANSITION IN ENDOCRINOLOGY: Hypogonadism in adolescence
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“Patient-centered care has been shown to result in improved patient satisfaction with some evidence for improved health outcomes [14,15].”
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“Crowley et al’s systematic review [25] found most interventions use strategies of either patient education, staffing (joint clinics, named transition co-ordinator) or service delivery (separate young adult clinics).”
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“Data from several studies suggests that patient education interventions for CSHCN can be effective in improving health outcomes and decreasing loss to follow-up in the transition period [19].”
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“Type 1 diabetes mellitus (T1DM) is a demanding disease for young people, who struggle to learn to self-manage their condition during the transition from childhood to adulthood [1,2].”
BackgroundSystematic review: Health care transition practice service models
BETZ, C. L., O'Kane, L. S., Nehring, W. M., & Lobo, M. L. (2016) · Nursing Outlook · doi:10.1016/j.outlook.2015.12.011 · Cited by 74 · see citing works
“The intervention effectiveness is suspect if the rigor of the intervention implementation (i.e., fidelity, lack of service description) was lacking, which has been cited in previous reviews as well (Crowley et al., 2011).”
BackgroundSchmidt, S., Herrmann-Garitz, C., Bomba, F., & Thyen, U. (2016) · Patient Education and Counseling · doi:10.1016/j.pec.2015.10.024 · Cited by 66 · see citing works
Transition of the Patient with IBD from Pediatric toAdult Care—An Assessment of Current Evidence
de Silva, P., & Fishman, L. (2014) · Inflammatory Bowel Diseases · doi:10.1097/mib.0000000000000045 · Cited by 65 · see citing works
“Joint medical visits have been demonstrated to enable successful, well-coordinated transition to adult medical-care follow-up.(34,35) Infrastructure for this is variable however and greatly depends on patient circumstance.”
BackgroundBETZ, C. L., Nehring, W. M., & Lobo, M. L. (2015) · Journal of Family Nursing · doi:10.1177/1074840715595024 · Cited by 64 · see citing works
“Similar parental recommendations were detailed in other reviews as well (Binks et al., 2007; Bloom et al., 2012; Bryant & Walsh, 2009; Crowley et al., 2011; Kralik et al., 2006; Rapley & Davidson, 2010; Stewart, Stavness, King, Antle, & Law, 2006).”
BackgroundMethodResultInfluentialEvaluation of a Rheumatology Transition Clinic
Stringer, E., Scott, R., Mosher, D. P., MacNeil, I., Huber, A. M., RAMSEY, S. E., & Lang, B. A. (2015) · Pediatric Rheumatology · doi:10.1186/s12969-015-0016-x · Cited by 63 · see citing works
“While acknowledging the need for more evidence, a number of position statements have been published outlining the fundamental principles of transition with one key message being that it should be a purposeful, organized, and coordinated process involving the youth, family and the health care team, with the goal of opt…”
BackgroundJudd, A., Sohn, A. H., & Collins, I. J. (2016) · Current Opinion in HIV and AIDS · doi:10.1097/coh.0000000000000302 · Cited by 60 · see citing works
“[34 ] The same review showed that three of eight studies involving joint clinics across the transition period (attendance of staff from both services at one or more clinics, within either paediatric or adult services) had improved outcomes.”
InfluentialSo hard to say goodbye: transition from paediatric to adult cardiology care
Kovacs, A. H., & McCrindle, B. W. (2013) · Nature Reviews Cardiology · doi:10.1038/nrcardio.2013.172 · Cited by 70 · see citing works
Ryan, K., Filipp, S., Gurka, M., Zirulnik, A. W., & Thompson, L. (2019) · Heliyon · doi:10.1016/j.heliyon.2019.e02604 · Cited by 62
“Most data come from studies of adolescents with chronic diseases and their transition to adult care [21, 22, 23].”
BackgroundTuomainen, H., Schulze, U., Warwick, J., Paul, M., Dieleman, G. C., Franić, T., Madan, J. J., Maras, A., McNicholas, F., Purper‐Ouakil, D., et al. (2018) · BMC Psychiatry · doi:10.1186/s12888-018-1758-z · Cited by 71 · see citing works
“In the 2000s, transitions research in paediatric services increased [35], professional consensus statements were developed [36, 37] and national policy recognising the importance of transition started to emerge [38].”
BackgroundAlBuhairan, F. S., Nasim, M., Otaibi, A. A., Shaheen, N. A., Jaser, S. A., & Alwan, I. A. A. (2016) · Diabetes Research and Clinical Practice · doi:10.1016/j.diabres.2016.01.001 · Cited by 65 · see citing works
Rutishauser, C., Sawyer, S., & Ambresin, A. (2014) · European Journal of Pediatrics · doi:10.1007/s00431-014-2291-9 · Cited by 61 · see citing works
“Similarly, in a qualitative study of 22 adolescents with chronic illness, of whom one third transferred to AHC during the study period, participants suggested that earlier discussions about transition, opportunities to meet the adult care team, and visits to the adult-oriented services prior to transition might have a…”
Disorders of sex development: Summaries of long-term outcome studies
Schober, J. M., Nordenström, A., Hoebeke, P. B., Lee, P. A., Houk, C. P., Looijenga, L. H. J., Manzoni, G., Reiner, W. G., & Woodhouse, C. R. J. (2012) · Journal of Pediatric Urology · doi:10.1016/j.jpurol.2012.08.005 · Cited by 64 · see citing works
“Patients feel particularly vulnerable as they approach adulthood [1].”
BackgroundLaitinen, E., Hero, M., Vaaralahti, K., Tommiska, J., & Raivio, T. (2012) · International Journal of Andrology · doi:10.1111/j.1365-2605.2011.01237.x · Cited by 61 · see citing works
“Probably the best way to avoid this would be to refer young adults with congenital HH to specialized transition clinics, as is suggested for adolescents with other chronic conditions (Crowley et al., 2011).”
BackgroundHealth, wellbeing and lived experiences of adults with SMA: a scoping systematic review
Wan, H. W. Y., Carey, K. A., D’Silva, A., Vucic, S., Kiernan, M. C., Kasparian, N. A., & Farrar, M. A. (2020) · Orphanet Journal of Rare Diseases · doi:10.1186/s13023-020-1339-3 · Cited by 64 · see citing works
Belling, R., Mclaren, S., Paul, M., Ford, T., Kramer, T., Weaver, T., Hovish, K., Islam, Z., White, S., & Singh, S. (2014) · Journal of Health Services Research and Policy · doi:10.1177/1355819614527439 · Cited by 60 · see citing works
“In other long-term conditions, appointment of transition co-ordinators who work across both child and adult services can achieve positive outcomes for services and young people.(5)”
BackgroundChild Poverty and the Promise of Human Capacity: Childhood as a Foundation for Healthy Aging
Wise, P. H. (2016) · Academic Pediatrics · doi:10.1016/j.acap.2016.01.014 · Cited by 55 · see citing works
“This conveyance of child health problems into adulthood has become a meaningful contributor to adult health patterns and underscores the importance of the transition of children’s care to adult health systems, particularly for poor children who might lose insurance and other benefits confined to childhood.(124)”
BackgroundDevelopmentally appropriate healthcare for young people: a scoping study
Farré, A., Wood, V. J., Rapley, T., Parr, J. R., Reape, D., & McDonagh, J. E. R. (2014) · Archives of Disease in Childhood · doi:10.1136/archdischild-2014-306749 · Cited by 60 · see citing works
The Chronically Critically Ill Patient: Pediatric Considerations
Peterson‐Carmichael, S. L., & Cheifetz, I. M. (2012) · Respiratory Care · doi:10.4187/respcare.01738 · Cited by 61 · see citing works
Mora, M. A., Sparud‐Lundin, C., Bratt, E., & Moons, P. (2017) · BMJ Open · doi:10.1136/bmjopen-2016-014593 · Cited by 75 · see citing works
Ames, J., Massolo, M. L., Davignon, M. N., Qian, Y., & Croen, L. (2020) · Autism · doi:10.1177/1362361320931268 · Cited by 67 · see citing works
“The quality and consistency of healthcare interactions during adolescence and early adulthood can have longterm impacts on an individual’s engagement with the health system during adulthood (Cheak-Zamora et al., 2013; Crowley et al., 2011).”
BackgroundBrown, M. J., MacArthur, J., Higgins, A., & Chouliara, Z. (2019) · Journal of Advanced Nursing · doi:10.1111/jan.13985 · Cited by 65 · see citing works
“…practices for people with ID. Joint paediatric and adult transition clinics, involving specialist nurses, could be a way to share skills and information as well as relieve parents’ anxieties regarding the move to an adult-oriented health care (Camfield and Camfield, 2011; Crowley et al., 2011).”
BackgroundYassaee, A., Hale, D., Armitage, A., & Viner, R. (2019) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2018.11.023 · Cited by 53 · see citing works
“(18) Such evidence is useful in guiding transition policies.”
BackgroundAdult care for Duchenne muscular dystrophy in the UK
Rodger, S., Woods, K. L., Bladen, C., Stringer, A., Vry, J., Gramsch, K., Kirschner, J., Thompson, R., Bushby, K., & Lochmüller, H. (2014) · Journal of Neurology · doi:10.1007/s00415-014-7585-3 · Cited by 53
“[21].”
- Authors
- Crowley, R., Wolfe, I., Lock, K., & McKee, M.
- Affiliations
- London School of Hygiene & Tropical Medicine (GB)
- Corresponding author
- Wolfe, I
- Venue
- Archives of Disease in Childhood
- Publisher
- BMJ
- Published
- 2011-03-08
- Volume
- 96
- Issue
- 6
- Pages
- 548-553
- ISSN
- 0003-9888 (ISSN-L)
- 1468-2044
- OpenAlex
- W2121649468
- Cited by
- 649
- References
- 0
- Citations by year
- 2026: 29 · 2025: 27 · 2024: 25 · 2023: 33 · 2022: 45 · 2021: 44 · 2020: 49 · 2019: 54 · 2018: 43 · 2017: 57 · 2016: 53 · 2015: 56 · 2014: 47 · 2013: 44 · 2012: 32
- FWCI
- 7.89
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Archives of Disease in Childhood (publishedVersion)
- PubMed (publishedVersion)
- Research Portal (King's College London) (submittedVersion)
- LSHTM Research Online (London School of Hygiene and Tropical Medicine) (submittedVersion)
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Health Sciences › Health Professions › General Health Professions › Child and Adolescent Health
- Health Sciences › Medicine › Emergency Medicine › Hospital Admissions and Outcomes
- Keywords
- care transitions, chronic disease, disability, youth, diabetes mellitus, patient education, glycosylated haemoglobin, health outcomes
- MeSH terms
- Adolescent, Adult, Child, Chronic Disease, Continuity of Patient Care, Delivery of Health Care, Health Services Research, Humans, Patient Education as Topic, Adolescent Health Services, Outcome Assessment, Health Care, Young Adult
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