RESUMEN
BACKGROUND: Standardized tools are used to measure health-related quality of life (HRQoL) and they focus on selected physical, emotional, and social functioning. This approach may miss out on the heterogeneity of HRQoL among various sub-populations. The patient-generated index (PGI) is a tool used to measure HRQoL based on patients' expectations. Among patients living with HIV, HRQoL is an important indicator as the world moves beyond the UNAIDS 90-90-90 goals, towards the so-called fourth 90 that aims at good HRQoL. We compared the PGI and the Euroqol 5 Dimension 3-level (EQ-5D-3L) to identify areas of importance to pregnant women living with HIV affecting thier HRQoL. METHODS: Through convenience sampling, we surveyed 100 pregnant women living with HIV attending antenatal and postnatal clinics in Western Kenya, using both the PGI and the EQ-5D-3L questionnaires. A PGI score and EQ-5D-3L index were generated for each participant. Data from the PGI was also summarized into themes. The PGI scores and EQ-5D-3L index scores were correlated using Pearson correlation. RESULTS: From the PGI tool, 64% of the women reported having two to three main priority areas of their lives affected by their HIV status. These areas centered on themes of economic wellbeing (84% of the women), physical health (58%), psychological/emotional health (49%), and relationships (28%). The mean PGI score was 2.01 [SD = 1.10; median 1.10]. The majority of the women reported having no problems in any of the 5 dimensions captured in the EQ-5D-3L. The mean EQ-5D-3L score was 0.94 [SD = 1.10; median 1.00]. Both the EQ-5D-3L and the PGI showed less than perfect HRQoL. There was no correlation between the PGI and the EQ-5D-3L scores. CONCLUSION: The PGI may capture aspects of contextual social and emotional life for Kenyan pregnant women living with HIV that are not identified by generic tools. Highlighting areas of importance to patients' HRQoL is key as focus shifts towards the fourth 90 and may also inform the design of care programs aligned to patient needs.