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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 (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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Doycheva, I., Watt, K. D. S., & Alkhouri, N. (2017) · Hepatology · doi:10.1002/hep.29068 · Cited by 155
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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).”
Heightened graft failure risk during emerging adulthood and transition to adult care
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“, clinic appointments, routine blood monitoring) deteriorate during adolescence and emerging adulthood across a broad range of chronic conditions, including diabetes, rheumatologic disorders and organ transplantation [18–22].”
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Ludvigsson, J. F., Agreus, L., Ciacci, C., Crowe, S. E., Geller, M. G., Green, P. H. R., Hill, I., Hungin, A. P., Koletzko, S., Koltai, T., et al. (2016) · Gut · doi:10.1136/gutjnl-2016-311574 · Cited by 117
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MethodHealth system strategies supporting transition to adult care
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“Furthermore, transition based on age has been described as a bureaucratic barrier [20] which has been highlighted as a potentially insufficient indicator of readiness to transition [16].”
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“4 25 – 27 Although national bodies have recommended more effective primary care provider involvement during transition and integrated primary and specialised care, 24 28 29 the role of primary care in facilitating transition and potentially mitigating adverse events associated with changes in care…”
BackgroundTransitioning HIV-Infected Youth Into Adult Health Care
Chakraborty, R., Dyke, R. V., Flynn, P., Aldrovandi, G. M., Chadwick, E., Cooper, E., Schwarzwald, H., & Martinez, J. (2013) · Pediatrics · doi:10.1542/peds.2013-1073 · Cited by 87
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“This systematic review adds to previous reviews on healthcare transition for multiple chronic conditions as it integrates studies on both outcomes and experiences (Betz et al., 2013; Crowley et al., 2011).”
BackgroundThe Role of Grit in College Student Health Care Management Skills and Health-Related Quality of Life
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“Patients feel particularly vulnerable as they approach adulthood.(1) Beyond childhood, caregivers should provide the same comprehensive care but focused on adult life, while empowering the older patient to take on the responsibility for self-care.”
BackgroundTransition from pediatric to adult follow-up care in childhood cancer survivors—a systematic review
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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
Dwyer, A. A., Phan-Hug, F., Hauschild, M., Elowe-Gruau, É., & Pitteloud, N. (2015) · European Journal of Endocrinology · doi:10.1530/eje-14-0947 · Cited by 75
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A measurement framework for quality health care for adolescents in hospital.
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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).”
Marani, H., Fujioka, J., Tabatabavakili, S., & Bollegala, N. (2020) · Children and Youth Services Review · doi:10.1016/j.childyouth.2020.105415 · Cited by 69
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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].”
BackgroundHusted, G. R., Weis, J., Teilmann, G., & Castensøe-Seidenfaden, P. (2018) · JMIR mHealth and uHealth · doi:10.2196/mhealth.8876 · Cited by 54
“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
“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).”
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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
“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
“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 65
“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
“[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
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
“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
Rutishauser, C., Sawyer, S., & Ambresin, A. (2014) · European Journal of Pediatrics · doi:10.1007/s00431-014-2291-9 · Cited by 61
“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
“Patients feel particularly vulnerable as they approach adulthood [1].”
BackgroundLaitinen, E., Hero, M. T., Vaaralahti, K., Tommiska, J., & Raivio, T. (2012) · International Journal of Andrology · doi:10.1111/j.1365-2605.2011.01237.x · Cited by 68
“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 72
Belling, R., McLaren, S., Paul, M., Ford, T. J., Kramer, T., Weaver, T. D., Hovish, K., Islam, Z., White, S. J., & Singh, S. P. (2014) · Journal of Health Services Research & Policy · doi:10.1177/1355819614527439 · Cited by 66
“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 63
“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
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
Mora, M. A., Sparud‐Lundin, C., Bratt, E., & Moons, P. (2017) · BMJ Open · doi:10.1136/bmjopen-2016-014593 · Cited by 75
Ames, J., Massolo, M. L., Davignon, M. N., Qian, Y., & Croen, L. (2020) · Autism · doi:10.1177/1362361320931268 · Cited by 67
“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
“…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
“(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].”
Metadata
- 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 › Medicine › Pediatrics, Perinatology and Child Health › Adolescent and Pediatric Healthcare
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Child and Adolescent Health
- Health Sciences › Nursing › Leadership and Management › 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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