ArticleOrphanet journal of rare diseases2026
Exploring the use of smartphone monitoring for young adults with Tuberous Sclerosis Complex (TSC): a qualitative analysis.
Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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6 authors.
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Abstract
backgroundSmartphone ecological momentary assessment (Smart EMA) has the potential to address limitations in standardised cross-sectional self-report assessments. Young adults with rare genetic conditions, including Tuberous Sclerosis Complex (TSC), may further benefit from Smart EMA as it may help overcome associated cognitive difficulties in self-report and mental health stigma. Framework analysis was used to explore the hypothetical acceptability of the use of Smart EMA in monitoring the daily experiences of young adults with TSC.
results14 young adults with TSC (Female = 9, age range 17:28) participated in online focus groups and interviews. Four main themes were generated. The first two themes describe the daily experiences of the participants (Understanding a New Young Adult Identity and Communicating Mental Health). The third theme explains how Smart EMA could be integrated into their everyday lives to support them (How Smart EMA Could Help). The final theme describes what would help or stop them from using the app (Hypothetical Barriers and Facilitators). This includes a need for personalisation, ease of use and unwanted unpredictability.
conclusionsThere are multiple ways in which Smart EMA could be integrated into supporting young adults with TSC, both clinically and in research. However, consideration must be taken into the design and protocol of Smart EMA to ensure its appropriateness for the varied abilities of the young adult TSC population. Further testing of hypothesised moderators is required to conclude Smart EMA is feasible and acceptable for young adults with TSC and other rare genetic conditions.
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