Evaluating Continuity During Transfer to Adult Care: A Systematic Review

Abstract

CONTEXT: Appropriate outcomes are required to evaluate transition programs' ability to maintain care continuity during the transfer to adult care of youths with a chronic condition. OBJECTIVE:To identify the outcomes used to measure care continuity during transfer, and to analyze current evidence regarding the efficacy of transition programs.DATA SOURCES: PubMed (1948PubMed ( -2014, Web of Science (1945, Embase (1947Embase ( -2014, and the reference lists of the studies identified. STUDY SELECTION:Screening on titles and abstracts; full-text assessment by 2 reviewers independently.DATA EXTRACTION: By 2 reviewers independently, by using a Cochrane form adapted to observational studies, including bias assessment. RESULTS:Among the 23 studies retrieved, all but 5 were monocentric, 16 were cohorts (15 retrospective), 6 cross-sectional studies, and 1 randomized trial. The principal disease studied was diabetes (n = 11). We identified 24 indicators relating to 2 main aspects of continuity of care: engagement and retention in adult care. As designed, most studies probably overestimated engagement. A lack of adjustment for confounding factors was the main limitation of the few studies evaluating the efficacy of transition programs. LIMITATIONS:The assessment of bias was challenging, due to the heterogeneity and observational nature of the studies. CONCLUSIONS: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.

Transition of care for patients with type 1 diabetes mellitus from pediatric to adult health care systems

“…This population of emerging adults then faces the challenge of transitioning from the pediatric to adult diabetes care setting, often at the same time as other major life changes including independent living, starting undergraduate studies or joining the workforce for the first time, changes in health insurance, and potentially starting a family of his or her own. Several recent publications have noted the lack of evidence-based strategies for transition of emerging adults with a variety of chronic medical conditions (2)(3)(4). In particular, managing the transition of young adults with T1DM has led to more discussion and research in this important area.…”

Transition of pediatric patients with an Auto-inflammatory Disease: an alternative version of the Daedaulus and Icarus myth

“…Poor compliance to these agents may not just be fear of needles, but reluctance of difficulties with self-administration, that my lead to social isolation. 25,31,33,34 Daedalus promotes self-education The patient's recognition of the triggering episodic crises and any experience of non-drug compliance will experientially help him/her realize the consequences of disobedience. Typical triggers, such as heat and overuse for FMF or cold exposure to cryopyrin syndromes need to be emphasized since diagnosis and may stimulate the patient to avoid or properly manage them.…”

“…In case of unraveled difficulties, individualized interactive training will be performed in the missing targets and the transition plan respectively modified or the final transfer delayed. 25,31,33,37 Moreover, recording questionnaires by the adolescent's response and aiming to evaluate his/her Satisfaction of the applied Health Service may support adherence to the Outpatient Clinic and promote his/her unprovoked preparation. 33,34,44,45 Daedalus and Icarus fly in parallel over the life waves and not too close to the inflammatory beams Upon verification of the patient's (and family's) global Transition readiness and absence of any disease flare or other physical or emotional stress, the final and orchestrated transfer by the Transition team will be conducted.…”

“…Without a tailored Transition plan, a young person may have a poor outcome and an impaired Health-Related Quality of Life, with a raised chance of non-compliance to periodic assessments in the new terra or malpractice of his/her self-care. 7,25,30,31 Regardless of the type of disease, the key preparation is the gradual familiarity with the disease profile and management, escorted by a blooming trusted communication with the stakeholders. 25,26,32 Icarus' wings Icarus' contemporary flight wings are the growing skills for communication, decision making, and self-health management, aiming towards a healthy life-style and realization of the life-long co-existence with the AID.…”

How can transition to adult care be best orchestrated for adolescents with epilepsy?

“…8 A Cochrane review in 2016 found only four valid studies with a total of 238 participants -too few to draw conclusions. 9 The goals for transition are rarely made explicit but three factors seem critical. 10 First, provide youth with developmentally appropriate education about their epilepsy, clinical course and treatment.…”