Development of a Prototype for a Bilingual Patient-Reported Outcome Measure of the Important Health Aspects of Quality of Life in People Living with HIV: The Preference Based HIV Index (PB-HIV)

(1) Background: The aim of this project was to develop a short, HIV-specific, health-related quality of life measure with a scoring system based on patient preferences for the different dimensions of the Preference-Based HIV Index (PB-HIV). (2) Methods: This study is a cross-sectional analysis of data from the Canadian Positive Brain Health Now cohort (n = 854; mean age 53 years). Items from the standardized measures were mapped to the areas from the Patient-Generated Index and formed the domains. A Rasch analysis was used to identify the best performing item to represent each dimension. Each item was then regressed on self-rated health (scored 0 to 100) and the regression parameters were used as scaling weights to form an index score for the prototype measure. (3) Results: Seven independent dimensions with three declarative statements ordered as response options formed the PB-HIV Index (pain, fatigue, memory/concentration, sleep, physical appearance/body image, depression, motivation). Regression parameters from a multivariable model yielded a measure with a scoring range from 0 (worst health) to 100 (perfect health). (4) Conclusions: Preference-based measures are optimal, as the total score reflects gains in some dimensions balanced against losses in others. The PB-HIV Index is the first HIV-specific preference-based measure.

Automated summary

This study aimed to develop a preference-based health-related quality of life measure for HIV patients. Through an analysis of data from the Canadian Positive Brain Health Now cohort, seven independent dimensions were identified, and a scoring system was developed that takes into account patient's health status across different dimensions.