JMIR Publications

ABSTRACT

Background:

Black Americans, particularly in the South, are disproportionately affected by the United States (US) HIV epidemic. Patient-reported outcomes (PRO) data collection can provide oft-overlooked data on social and behavioral determinants of health.

Objective:

We piloted PRO data collection using an electronic tablet among people with HIV (PWH) in care at an HIV clinic affiliated with a Historically Black Medical College in Nashville, Tennessee.

Methods:

Participants completed PRO questionnaires on a hand-held tablet. We interviewed 20 of these participants to learn more about their questionnaire experience. Interview guide development was grounded in the Cognitive Behavioral Model in which thoughts, feelings, and behaviors are interrelated. Data coding, analysis, and reporting followed the Consolidated Criteria for Reporting Qualitative Research guidelines.

Results:

Among 100 PWH enrolled, the median age was 50 years, 89% were Black, and 60% were male. Five major interview themes emerged: Overall Experience, Question Content, Sensitive Topics, Clinic Visit Impact, and Future Recommendations. Interview participants felt the tablet was easy to use and that question content was meaningful. PRO questions elicited discomfort in some, but most desired to be truthful and would complete PRO questions at future visits.

Conclusions:

The use of an electronic tablet to complete PRO questionnaires was well-received by this cohort of vulnerable PWH in the US South. Despite some discomfort, our cohort believed this was a valuable part of their medical experience. Future research should focus on scaling up the implementation and evaluation of PRO data collection in a contextually appropriate manner.