Transition experiences from childhood to adulthood in individuals with Tuberous Sclerosis Complex (TSC) and the use of smartphone monitoring: A qualitative analysis of parent perspectives.

Background Young adults with rare genetic conditions, such as Tuberous Sclerosis Complex (TSC), and their parents/caregivers can experience challenges in daily life during the transition from childhood to young adulthood. Smartphone ecological momentary assessment (smart EMA) has the potential to address limitations in standardised cross-sectional assessments as it can provide detailed information on daily challenges and fluctuations. Although some young adults with TSC use smartphones, many still require the support of parents/caregivers to communicate their feelings or access technology. Framework analysis was used to explore the hypothetical acceptability of the use of smart EMA from parent/caregiver perspectives in monitoring the daily experiences of young adults with TSC. Results Seven parents of young adults with TSC (Female = 6, age range 54:64) participated in online focus groups. Four main themes were generated. The first two themes describe the experiences of becoming a young adult with TSC for both the young adults and their parents (Impact of Transition and Impact of TSC on Young Adulthood). The third theme explains how a smart EMA app could be integrated into young adults and parents’ everyday lives to support independence (How an EMA App Could Help). The final theme describes what would help or stop the young adults and their parents from using the app (Hypothetical Barriers and Facilitators). This includes familiarity with questions and behaviours, sharing the app between caregivers and the need for personalisation. Conclusions Young adults with TSC continue to present with associated psychiatric difficulties which are associated with continued and new concerns for parents. There are multiple ways in which smart EMA could be integrated into supporting young adults with TSC utilising parent or caregiver support. However, consideration must be taken into the design and protocol of a smart EMA app to ensure its appropriateness for the varied level of support young adults with TSC require. Further testing of hypothesised moderators is required to conclude the feasibility and acceptability of smart EMA for young adults with TSC and other rare genetic diseases who continue to require parent/caregiver support for daily functioning.