Perceptions of the family physician from adolescents and their caregivers preparing to transition to adult care

BACKGROUND: Adolescents with chronic health conditions and/or disabilities (CHC/D’s) often face challenges when transitioning to adult care, which leads to a higher risk of morbidity and mortality. Although it is recommended that establishing the medical home and family physician (FP) attachment prior to transfer will improve health outcomes, there is little evidence or policy surrounding the role of the FP during this transition. This study explores the described use of health services by adolescents with CHC/D’s, as well as the adolescent’s and caregiver’s perceptions of their FP. METHODS: Participants were recruited from the British Columbia Children’s Hospital, Canada and a multi-method phased approach was used. In Phase 1, 84 adolescent and caregiver pairs completed questionnaires asking what medical services they accessed for specific health needs. In Phase 2, another cohort of 21 adolescent and caregiver pairs completed the same questionnaires and were interviewed regarding their perception of their FP. RESULTS: 96% (n = 81) of adolescents with CHC/D’s in phase 1 had a FP. Thirty four percent (n = 34) of adolescents had not seen their FP in the last 6 months. While adolescents with CHC/D mostly accessed their FP for primary health issues, they frequently also accessed specialists for prescription refills (50%, n = 51), mental health (29%, n = 30) and sexual health (16%, n = 16). While most adolescent/caregiver participants reported positive communication and trust in their FP, some had a poor understanding of the FP’s role in coordinating care. CONCLUSION: As many adolescents with CHC/D may see their FP infrequently and may not clearly understand their role, opportunities exist for strengthening primary care home attachment as well as adolescent and caregiver literacy around the potential contribution of the FP during and after transfer to adult services. Responsibility for improving care coordination for this population should be ideally shared between FPs and pediatric specialists. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12875-018-0830-6) contains supplementary material, which is available to authorized users.