418 - Improving the Transition to Adulthood Process for Children with Neurodevelopmental Disabilities

Poster Number: 418
Publication Number: 418.207

Sara G. Shank, Baylor College of Medicine, Houston, TX, United States; Janki P. Patel, Baylor College of Medicine, Houston, TX, United States; Dinah L. Godwin, Baylor College of Medicine, Houston, TX, United States; Jennifer Cervantes, Baylor College of Medicine, Houston, TX, United States; Jennifer Y. Torres, Baylor College of Medicine, Houston, TX, United States; Leandra N. Berry, Baylor College of Medicine, Houston, TX, United States; Holly K.. Harris, Baylor College of Medicine / Texas Children's Hospital, Houston, TX, United States

Background: Transition into adulthood for children with neurodevelopmental disabilities not only brings added challenges, but also requires early planning in order to be effectively navigated. This transition process is typically not clearly outlined, and at times, may be overlooked by caregivers and/or providers involved in the patient’s care. To our knowledge, no standardized transition process exists within the Developmental Pediatrics clinic at our tertiary academic center.

Objective: This quality improvement project seeks to establish a clear transition process within our Developmental Pediatrics clinic based on the Six Core Elements of Health Care Transition. Aim 1 within this QI project is to better understand current expectations and practices around the transition process.

Design/Methods: A baseline needs assessment was conducted with both caregivers and providers/staff. All providers and staff were sent a survey link via e-mail and responses were de-identified. A survey was also requested from caregivers planning to attend virtual workshops discussing transition into adulthood and from a subset of caregivers of patients seen in the Fragile X Specialty clinic within our program.

Results: A total of 20 providers/staff responded and 89% (N=16) indicated that they were discussing transition of care either weekly or monthly. Providers indicated that transition planning should occur at ages 10 to 16 years. However, of the 33 caregivers who completed the survey, 91% indicated that their provider had never discussed “transition care.” Providers indicated that the most difficult topics to discuss were insurance and benefits (N =11) and guardianship/decision making (N=9). Caregivers most often indicated a desire for providers to discuss puberty/sexual health (N=20). Of note, 48% (N=16) of caregivers indicated that puberty/sexual health were discussed at a visit, 21% (N=7) indicated that insurance/benefits were discussed and 6% (N=2) indicated guardianship/decision making were discussed.

Conclusion(s): In our clinic, an important transition topic for caregivers was puberty/sexual health, and nearly half of caregivers reported that providers did discuss this topic. Providers reported feeling least comfortable discussing insurance/benefits, and caregiver responses indicate that this topic is not routinely discussed. Currently, transition of care topics are perceived to be discussed by providers but not by parents. A standardized transition policy will likely help bridge this communication gap between providers and caregivers regarding transition by clearly defining the process.