Subjective Perceptions of Digital Phenotyping Measures of Negative Symptoms Among Individuals At Clinical High Risk for Psychosis and Their Relatives.

OBJECTIVE: Negative symptoms are frequently experienced among youth at clinical high-risk (CHR) for psychosis. While clinical interviews are the most well-established and widely used measurements for assessing negative symptoms in individuals at CHR, several limitations exist. Digital phenotyping methods (eg, geolocation, ecological momentary assessment [EMA]) have shown promise in measuring negative symptoms across contexts. However, little is known about how CHR and their relatives (REL) perceive these methods or understand EMA questions. Accounting for subjective viewpoints is important before these tools can be utilized at scale and in clinical trials. METHOD: Groups of CHR (n = 45) and REL (n = 18) participants completed structured surveys and qualitative interviews evaluating perceived importance of and concerns regarding digital phenotyping measures to assess negative symptoms as well as the perceived clarity of EMA survey questions. RESULTS: Both groups showed low levels of concern regarding digital phenotyping methods. Concerns mainly revolved around privacy and data security, and were mitigated after clarifications on protection policies and research procedures were provided. Participants reported that active and passive digital phenotyping measurements were moderately important and could accurately measure their symptoms. They also deemed most EMA questions clear and provided suggestions for revising those they found less clear. CONCLUSIONS: Clinical high-risk and REL participants largely supported the use of digital phenotyping to measure negative symptoms, endorsing its perceived relevance and practical feasibility. These findings contribute to ongoing efforts to align clinical assessments tools with lived experience and to provide support for regulatory standards for patient-centered outcome measures.