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)

Kedar K V Mate; Bertrand Lebouché; Marie-Josée Brouillette; Lesley K Fellows; Nancy E Mayo

doi:10.3390/jpm12122080

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)

J Pers Med. 2022 Dec 16;12(12):2080. doi: 10.3390/jpm12122080.

Authors

Kedar K V Mate^{1

2}, Bertrand Lebouché^{1

2}, Marie-Josée Brouillette^{2

3}, Lesley K Fellows⁴, Nancy E Mayo^{2

5

6}

Affiliations

¹ Department of Family Medicine, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC H3S 1Z1, Canada.
² Centre for Health Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC H4A 3S5, Canada.
³ Department of Psychiatry, McGill University Health Centre, Montreal, QC H4A 3J1, Canada.
⁴ Department of Neurology and Neurosurgery, Montreal Neurological Institute, McGill University, Montreal, QC H3A 2B4, Canada.
⁵ School of Physical and Occupational Therapy, McGill University, Montreal, QC H3G 1Y5, Canada.
⁶ Divisions of Clinical Epidemiology, Geriatrics, Experimental Medicine, Department of Medicine and Health Sciences, McGill University, Montreal, QC H4A 3J1, Canada.

Abstract

(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.

Keywords: HIV; health-related quality of life; patient-generated index; patient-reported outcome measure; preference-based measure.

Grants and funding

Bertrand Lebouché reports grants for investigator-initiated studies from ViiV Healthcare, Merck, and Gilead; consulting fees from ViiV Healthcare, Merck, and Gilead. He is the holder of a Canadian Institutes for Health Research, Strategy for Patient-Oriented Research Mentorship Chair in Innovative Clinical Trials for HIV Care and is also supported by a career award, LE 250, from the Quebec’s Ministry of Health for researchers in Family Medicine. The other authors have nothing to disclose. The data for this project were collected with funding from a Team Grant from the Canadian Institutes of Health Research (CIHR) (TCO-125272), awarded to Fellows, Brouillette, and Mayo and by the CIHR HIV Clinical Trials Network (CTN 273). This project was supported by the Canadian Institutes for Health Research (CIHR), Strategy for Patient-Oriented Research (SPOR) Mentorship Chair in Innovative Clinical Trials in HIV; by the Partnerships to Improve HIV Outcomes and Treatments (PIHVOT) from ViiV Healthcare Canada. Dr. Bertrand Lebouché’s research is supported by a grant from the Canadian Institutes of Health Research (Quebec SPOR Support Unit -M006), Canadian HIV Trials Network, Canadian Institutes of Health Research (CTN 283).