The Living Lab at Home: Feasibility and Acceptability of Multimodal In-Home Data Collection Among Youth Across the Developmental Spectrum.
Katelynn E Boerner, Veronica Dudarev, Leora Pearl-Dowler and 4 others
PMID 39446061WHAT IT FOUND
Youth with complex conditions found text-message surveys and wrist monitors manageable, but saliva sampling was too hard to fit into daily life.
Families rated the study acceptable but noted that repeated prompts could trigger emotional distress.
Key findings
01Saliva collection adherence dropped to 34.9% when excluding protocol violations, making it the least feasible data type.
02Four participants reported emotional distress from the study procedures, specifically from tracking their own symptoms and experiences.
03Families reported moderate burden and interference despite generally high satisfaction and acceptability ratings.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study had only 16 participants, so it cannot determine if these methods work for broader populations. Families who declined participation cited being too stressed or busy, meaning the results may not reflect the experience of the most overwhelmed families. The study measured feasibility and acceptability, not whether these data methods actually improve clinical care or diagnosis.
Declared interests
None declared.
The easy way to misread this
Do not interpret the high acceptability ratings as evidence that these methods are easy for patients. Saliva collection failed frequently due to daily life constraints, and the act of self-monitoring caused emotional distress in some participants.