Position paper

Transition to adult health care for adolescents and young adults with chronic conditions: Position paper of the society for adolescent medicine

To identify and synthesise the experiences and benefits of addressing vocational issues in the provision of healthcare for young people (YP) with long-term conditions (LTCs).

We searched 10 bibliographic databases. Restrictions were applied on publication date (1996–2020) and language (English). Two reviewers independently screened records against eligibility criteria. Articles reporting relevant qualitative and/or quantitative research were included. Quality appraisal was undertaken following study selection. Qualitative data were synthesised thematically, and quantitative data narratively. A cross-study synthesis integrated qualitative and quantitative findings.

43 articles were included. Thematic synthesis of qualitative studies (n = 23) resulted in seven recommendations for intervention (psychological support; information/signposting; skills training; career advice; healthcare-school/workplace collaboration; social support; flexible/responsive care). The narrative synthesis summarised results of 17 interventions (n = 20 quantitative studies). The cross-study synthesis mapped interventions against recommendations. Transitional care was the intervention type that most comprehensively met our proposed recommendations.

Evidence from YP perspectives highlights that vocational development is an important area to address in healthcare provision. Robust intervention studies in this area are lacking.

Our evidence-based recommendations for intervention can support health professionals to better address vocational issues/outcomes. With minimal adaptations, transitional care interventions would be particularly well suited to deliver this.

Young adults with intellectual/developmental disabilities (YAIDD) are a vulnerable population during HCT due to their complex care coordination and adaptive needs, yet factors associated with transition preparedness are not well defined. We aimed to determine factors associated with health care transition (HCT) preparation satisfaction for YAIDD establishing care with an adult medical home.

408 YAIDD or their families completed the HCT Feedback Survey 2.0 upon establishing adult care. Logistic regression models were used to determine associations between a composite of six HCT Feedback Survey questions that most correlated with the 2019 National Survey of Children's Health transition questions.

YADD who had HCT preparation visits with a designated HCT clinic were 9 times more likely to have met all six composite HCT criteria after controlling for the number of technologies required and race/ethnicity (adj OR 9.04, 95% CI: 4.35, 18.76) compared to those referred from the community. Compared to patients who were referred from the community, the odds of feeling very prepared versus somewhat or not prepared were 3.7 times higher (adj OR 3.73, 95% CI: 1.90, 7.32) among patients referred from a designated HCT program.

YAIDD who participated in a structured HCT program prior to transfer to adult care experienced higher transition preparation satisfaction.

A structured HCT clinic model to prepare adolescents with DD for transition to adult care may improve HCT preparation satisfaction for this population.

Effective interventions are needed to help adolescents with T1D develop independent self-management skills to prevent commonly observed deterioration of disease self-management resulting in poor health outcomes. Using a prospective RCT design, we assessed the impact of a nurse-led education program based on motivational interviewing (MI) in youth with Type 1 diabetes (T1D).

After parental consent and youth assent, we prospectively randomized 66 adolescents 13–18 years old with T1D to either usual care (every 3 months visit with pediatric endocrinologist) or usual care supplemented by 2 in-person and 4 follow-up phone calls with a nurse educator in a pediatric endocrinology clinic of the University Hospital Farhat Hached, Sousse, Tunisia. We used MI sessions to support youth general and disease specific self-management skills. Outcomes were change, between baseline and 6 months, in TRAQ (a validated measure of youth self-management) scores and HbA1c values.

Mean TRAQ scores (based on a 5-point Likert scale) increased by 1.44 points (s.d. = 0.56) in the Intervention Group versus 0.26 points (s.d. = 0.34) in the control group (p < 0.001). The mean HbA1C value decreased in the intervention group by 0.95 units versus a decrease of 0.12 units in the control group (p = 0.047).

We found that a brief, nurse-led MI-based educational intervention, integrated into specialty pediatric care, resulted in a significant improvement in both self-reported self-management skills and in HbA1c values.

Trial registration: Registered in ClinicalTrials.gov Identifier: NCT04798937

La transition de la pédiatrie vers les soins d’adultes concerne un nombre croissant de jeunes vivant avec une condition de santé chronique. Devenue un champ d’études et de pratiques, la “transition” s’est construite par étapes successives dont la nature nous informe sur son évolution et les enjeux actuels.

Transition from pediatrics to adult care involves a growing number of young people living with chronic health conditions. Now a field of study and practice, transition has been built up in successive stages, the nature of which informs us about its evolution and current issues.