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The development of PROQOL-HIV: An international instrument to assess the health-related quality of life of persons living with HIV/AIDS
Journal article   Peer reviewed

The development of PROQOL-HIV: An international instrument to assess the health-related quality of life of persons living with HIV/AIDS

M. Duracinsky, S. Herrmann, B. Berzins, A.R. Armstrong, R. Kohli, S. Le Coeur, A. Diouf, I. Fournier, M. Schechter and O. Chassany
JAIDS Journal of Acquired Immune Deficiency Syndromes, Vol.59(5), pp.498-505
2012
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Abstract

Objectives: Health-related quality of life (HRQL) is an important outcome in HIV/AIDS infection and treatment. However, most existing HIV-HRQL instruments miss important issues (eg, sleeping problems, lipodystrophy). They were developed before highly active antiretroviral therapy (pre-HAART), and in a single language. We sought to develop a contemporary HIV-HRQL instrument (PROQOL-HIV) in multiple languages that accounts for HAART treatment and side effects. This article details the 3-stage content validation phase of PROQOL-HIV. Methods: In stage 1, we developed a conceptual model of HIV-HRQL and questionnaire item bank from thematic analysis of 152 patient interviews conducted simultaneously across 9 countries. In stage 2, pilot items were selected by an expert panel to form the pilot instrument. Stage 3 involved linguistic validation and harmonization of selected items to form an equivalent instrument in 9 target languages. Results: Analysis of 3375 pages of interview text revealed 11 underlying themes: general health perception, social relationships, emotions, energy/fatigue, sleep, cognitive functioning, physical and daily activity, coping, future, symptoms, and treatment. Seven issues new to HIV-HRQL measurement were subsumed by these themes: infection fears, future concerns, satisfaction with care, self-esteem problems, sleep problems, work disruption, and treatment issues. Of the 442 theme-related items banked, 70 items met the retention criteria and formed the pilot PROQOL-HIV instrument. Conclusions: HIV patients across 11 countries attributed a wide range of physical, mental, and social issues to their condition, many of which were not measured by existing HIV-HRQL instruments. The pilot PROQOL-HIV instrument captures these issues, is sensitive to sociocultural context, disease stage, and HAART.

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Collaboration types
Domestic collaboration
International collaboration
Citation topics
1 Clinical & Life Sciences
1.66 HIV
1.66.11 HIV/AIDS Prevention
Web Of Science research areas
Immunology
Infectious Diseases
ESI research areas
Immunology
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