Exploring the ICF-CY as a framework to inform transition programs from pediatric to adult healthcare.

Objective: To explore the utility of the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) for informing transition-related programs for youth with chronic conditions moving into adult healthcare settings, using an exemplar spina bifida program.

Methods: Semi-structured in-depth interviews were conducted with 53 participants (9 youth and 11 parents who participated in a spina bifida transition program, 12 young adults who did not, 12 clinicians, and 9 key informants involved in development/implementation). Interview transcripts were thematically analyzed, and then further coded using ICF-CY domain codes.

Results: ICF-CY domains captured many key areas regarding individuals" transitions to adult care and adult functioning, but did not fully capture concepts of transition program experience, independence, and parents" role.

Conclusions: The ICF-CY framework captures some experiences of transitions to adult care, but should be considered in conjunction with other models that address issues outside of the domains covered by the ICF-CY.