1150 - Health Care Transition for Children with Disability: The Patient’s Perspective

Objectives: Transitioning health care for children with disabilities to an adult system requires careful planning and specialized support. Numerous knowledge gaps on this topic exist. The objective of this study was to explore ‘patients’ and families’ personal experiences during this transition to identify areas of improvement.

Design: In this cross-sectional study, we phone-surveyed a cohort of patients who transitioned from a pediatric physiatry clinic to adult care. Questions were designed to assess patients/families’ overall satisfaction with the transition process, barriers to transition, and areas of potential improvement.

Results: The majority of surveyed patients had a diagnosis of cerebral palsy (n=19, 76%). Transition discussions typically started after 18 years of age (N=18, 72%), and most patients completed the transition between 21-25 years (N=19, 76%). The median satisfaction score was 4 (Interquartile range: 3-5). Five patients/families (20%) were not satisfied with the process. Patients found assistance from their pediatric physiatrist in finding an adult physiatrist (n=21, 84%) most helpful, followed by finding an adult subspecialist (n=8, 32%), and assistance with guardianship process (n=7, 28%). The biggest barriers were lack of education regarding the process (n=6, 24%), insurance barriers (n=5, 20%), time constraints (n=4, 16%) and finding suitable adult providers (n=4, 16%). Suggestions for improvement included more adult providers options (n=8, 32%), more time for transition (n=4, 16%) and better information on the transition process (n=4, 16%).

Conclusions: Overall, patients expressed satisfaction with the transition process at our local institution, but also identified areas for improvement, including insurance coverage, adequate education, and time for transitioning. Prompt referral to a dedicated transition clinic with early access to ancillary support (social workers, community resources) may improve the process.