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Transition of care from pediatric to adult services for young adults with type 1 diabetes

Young adults between 15-25 years with diabetes type-1 frequently have poor glucose control, which leads to higher risk of long-term complications. A structured transition of care from pediatric to adults services for young adults with diabetes type 1 would potentially enable better blood glucose control.

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SBU Enquiry Service

Consists of structured literature searches to highlight studies that can address questions received by the SBU Enquiry Service from Swedish healthcare or social service providers. We assess the risk of bias in systematic reviews and when needed also quality and transferability of results in health economic studies. Relevant references are compiled by an SBU staff member, in consultation with an external expert when needed.

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Published: Report no: ut201905 Registration no: SBU 2018/47

Question

What is the effect of structured transition of care from pediatric to adult services for young adults with type 1 diabetes?

Table with identified studies

Table 1 Systematic reviews on adolescents with diabetes type 1
Included studies Population/intervention Outcome
Schulz et al. 2017 [1]
18 studies, including: 
1 RCT [1]
1 prospective cohort
10 retrospective cohort
6 quasi-experimental
4 studies in meta-analysis		 Youth with Type 1 diabetes, (ages 11-26);
Transition program from pediatric to adult care		 Glycemic control
Severe hypoglycemi
Diabetic ketoacidosis
Authors' conclusion:
“This review suggests that transition interventions may be effective in maintaining glycemic control and/or prevent its worsening during transition. While there is a trend that programs that included both a transition coordinator and dedicated transition clinic demonstrating better glycemic improvements than those with a single component, it remains unclear which elements of transition programs are most effective at improving diabetes outcomes. Other outcomes, including number of severe hypoglycemic and DKA events, appear to improve post-transition when a transition program is in place. There may also be benefits to a later transition in care rather than an earlier one. 
Currently, recommendations from professional organizations on transition interventions lack evidence and are primarily based on consensus of professional opinion. Additional research is needed to generate evidenced-based guidelines and to determine which transition elements are most effective during the transition period from pediatric to adult care. Future studies should compare transition components to assess which have greatest efficacy.”
Hynes et al 2016 [2]
12 studies, including: 
8 quantitative
4 qualitative		 Young adults with Type 1 Diabetes mellitus (15-30 y);
Setting: Transition (8 studies)
Young adult diabetic clinic (4 studies)		 Attendance
Transition delay (delay in attending adult clinic)
Authors' conclusion:
“Young adult’s experiences transitioning from paediatric to adult diabetes care can influence attendance at the adult clinic positively if there is a comprehensive transition programme in place, or negatively if the two clinics do not communicate and provide adequate support. Post-transition, relationship development and perceptions of the value of attending the clinic are important for regular attendance. Controlled research is required to better understand decisions to attend or not attend outpatient services among people with chronic conditions. Service delivery must be sensitive to the developmental characteristics of young adults and tailored support may be required by young adults at greatest risk of non-attendance.”
Findley et al 2015 [3]
31 studies,
including:
18 quantitative studies
1 RCT [2]
13 qualitative studies		 Adolescents with type 1 diabetes (ages 14-29);
Data-based investigations that addressed health care transition, including structured transition programmes		 Glycemic control,
Type of post transfer practitioner (general or endocrinologist),
Hospitalisations,
Experiences,
Elements of successful transition
Authors' conclusion:
“Key components of transitional care practices that are associated with positive outcomes are structured transitional care programs, individual support (in person or technology based), and strong relationships with providers (physicians, nurses, dieticians). In order to develop a consensus model for implementing transitional care into routine practice quality research incorporating all perspectives must be conducted and evaluated systematically. This research is essential in creating a seamless system of care for emerging adults with diabetes, to enhance individual quality of life and help to prevent long term diabetes complications and comorbidities.”
Sheehan et al 2015 [4]
46 articles (43 studies),
including:
24 studies on transition 
[6 controlled studies, 
18 before-after studies],
24 studies on experiences		 Young people with type 1 diabetes;
Transition from child to adult healthcare, incl. specific transition programmes		 HbA1c
Attendance
Diabetes-related admissions (diabetic ketoacidosis) 
Self-care;
Experiences:
Discontinuity of care
Renegotiation of condition management
Psychological and practical needs
Authors' conclusion:
”Although the various transition processes were not well described, thus making comparability across studies difficult, there appears to be some preliminary evidence of a positive impact of structured transition programmes on glycaemic control, clinic attendance and diabetes-related hospitalizations for young people with Type 1 diabetes during healthcare transition. Studies assessing the outcomes of participants who attended transition programmes or interventions, compared with those who did not, found no change in or improved glycaemic control, better attendance rates and fewer diabetes-related hospitalizations post-transition. Well designed randomized controlled trials are now needed to assess this. It is also important that future studies provide in-depth descriptions of transition processes and protocols so that cross-study comparisons can be made. Studies examining the experiences of transition suggest many processes that should be considered in transition programmes as they are likely to improve outcomes and experiences for young people with Type 1 diabetes. These include better continuity of care, greater continuity of medical staff in adult care, more preparation for enhanced responsibility, and more communication and collaboration between child and adult services.”
Farrell et al 2014 [5]
13 studies
descriptive/comparative		 Young adults with type 1 diabetes (15–19 years) 
transitioned from pediatric to adult health care services.
Any intervention which identified factors that influenced the transition (structured or unstructured)		 Factors that determine diabetes care outcomes:
Primary outcomes: 
Diabetes control as measured by HbA1c at follow-up, loss to follow-up, adherence to insulin therapy, incidence of hospital admission for acute complications, and frequency and regularity of clinic attendance.
Secondary outcomes: 
Uptake of screening for long term diabetes complications, cost effectiveness of intervention, health-related quality of life and patient satisfaction.
Authors' conclusion:
”The evidence identified from this review is suggestive that a structured transition intervention employing a dedicated health professional to support and coordinate the process is more likely to prevent loss to follow-up, maintain clinic attendance, have a positive impact on diabetes control, reduce hospital admissions, and be a more cost effective and positive experience for patients than an unstructured or usual care model.”

 

Table 2 Systematic reviews over adolescents with several conditions
Included studies Population/Intervention Outcome
Gabriel et al 2017 [6]
43 studies, including:
15 on diabetes type 1		 Youths transferring from pediatric to adult outpatient healthcare;

Transition interventions
Transition interventions were analyzed in terms of:
transition preparation,
transfer of care,
and integration into adult care		 Population health outcomes: -adherence to care (incl. disease-specific outcomes)
– patient-reported health
– quality of life
– self-care skills

Experience of care:
– satisfaction with care
– barriers to care

Utilization/ cost measures:
– service utilization (incl. clinic, hospital, surgery, procedures)
– process of care (incl. communications among providers, documentation of transition, clinical processes)
– costs of care.
Authors' conclusion:
“Structured transition interventions often resulted in positive outcomes. Future evaluations should consider aligning with professional transition guidance; incorporating detailed intervention descriptions about transition planning, transfer, and integration into adult care; and measuring the triple aims of population health, experience, and costs of care.”
Campbell et al 2016 Cochrane Review [7]
4 RCT, including:
2 RCT diabetes type 1
[1,2]		 Adolescents with conditions requiring ongoing clinical care (incl. diabetes mellitus, cystic fibrosis, muscular dystrophy, congenital heart disease, cerebral palsy, autism, juvenile idiopathic arthritis, solid organ transplantation, and epilepsy).
Transitional-care models:
Any care model (or clinical pathway) aimed at improving the transition of care for adolescents from paediatric to adult health services
(dedicated adolescent units, joint clinics, the use of specialised key workers).		 Disease-specific patient outcomes or status:
– HbA1c,
– lung function,
– disease-specific patient-reported outcomes (PROMs);

Secondary outcomes:
– Transitional readiness
– Patient satisfaction
– Treatment adherence
– Health-related quality of life
– Disease-related knowledge
– Self-advocacy skills
– Improved documentation of transitional issues
– Unanticipated or adverse outcomes
– Healthcare resource use and cost data
Authors' conclusion:
“The available evidence […] covers a limited range of interventions developed to facilitate transition in a limited number of clinical conditions, with only four to 12 months follow-up. These follow-up periods may not be long enough for any changes to become apparent as transition is a lengthy process. There was evidence of improvement in patients’ knowledge of their condition in one study, and improvements in self-efficacy and confidence in another.”
“While there is a wide range of transition programmes that are being developed in different countries, often within particular clinical specialties, this review only identified four small studies that provided low certainty evidence about educational interventions targeting participating adolescents, and no studies of interventions that targeted the organisation of care (for example, joint clinics or provision of a key worker).”
Rachas et al. 2016 [8]
23 articles, including:
11 on diabetes type 1		 Patients with long term health conditions requiring ongoing health care;

Patient care initiated in pediatric department		 Continuity of care (24 indicators);
2 main aspects:
engagement
retention in adult care
Authors' conclusion:
“This review highlights the paucity of knowledge about the efficacy of transition programs for ensuring care continuity during the transfer from pediatric to adult care. The outcomes identified are relevant and not specific to a disease. However, the prospective follow-up of patients initially recruited in pediatric care should be encouraged to limit an overestimation of care continuity.”
Chu et al. 2015 [9]
5 studies, including:
4 on diabetes;
1 RCT [1]
3 retrospective observational		 Adolescents and young adult with chronic illness;
Transition intervention programs		 Transfer, defined as attending at least one appointment with an adult healthcare provider
Authors' conclusion:
“While the current evidence base to guide healthcare transfer is lacking, this systematic review's findings may provide a foundation for future research that rigorously examines the key components of effective transfer described above. Most notably, establishing clearer definitions and metrics of transfer success, creating infrastructure that facilitates measurement and tracking of patient transfers, and measuring the impact of discrete intervention components on transfer success will be important in extending the evidence base available to guide practice and ensuring that the positive effects of transition interventions are durable into adulthood.”

References

  1. Schultz AT, Smaldone A. Components of Interventions That Improve Transitions to Adult Care for Adolescents With Type 1 Diabetes. Journal of Adolescent Health 2017;60:133-146.
  2. Hynes L, Byrne M, Dinneen SF, McGuire BE, O'Donnell M, Mc Sharry J. Barriers and facilitators associated with attendance at hospital diabetes clinics among young adults (15-30 years) with type 1 diabetes mellitus: a systematic review. Pediatric Diabetes 2016;17:509-518.
  3. Findley MK, Cha E, Wong E, Faulkner MS. A Systematic Review of Transitional Care for Emerging Adults with Diabetes. Journal of Pediatric Nursing 2015;30:e47-62.
  4. Sheehan AM, While AE, Coyne I. The experiences and impact of transition from child to adult healthcare services for young people with Type 1 diabetes: a systematic review. Diabet Med 2015;32:440-58.
  5. Farrell K, Griffiths R, Fernandez R. Factors determining diabetes care outcomes in patients with type 1 diabetes after transition from pediatric to adult health care: a systematic review. JBI Database of Systematic Reviews and Implementation Reports 2014;12:374-412.
  6. Gabriel P, McManus M, Rogers K, White P. Outcome Evidence for Structured Pediatric to Adult Health Care Transition Interventions: A Systematic Review. J Pediatr 2017;188:263-269 e15.
  7. Campbell F, Biggs K, Aldiss SK, O'Neill PM, Clowes M, McDonagh J, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database of Systematic Reviews 2016;4:CD009794.
  8. Rachas A, Lefeuvre D, Meyer L, Faye A, Mahlaoui N, de La Rochebrochard E, et al. Evaluating Continuity During Transfer to Adult Care: A Systematic Review. Pediatrics 2016;138.
  9. Chu PY, Maslow GR, von Isenburg M, Chung RJ. Systematic Review of the Impact of Transition Interventions for Adolescents With Chronic Illness on Transfer From Pediatric to Adult Healthcare. Journal of Pediatric Nursing 2015;30:e19-27.

Literature search

Literature search.pdf

Project group

Malin Höistad, Maja Kärrman, Sara Fundell and Miriam Entesarian Matsson at SBU.

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