Abstract #403  -  An international scale of Quality of Life specific to People living with HIV/AIDS
Authors:   Presenting Author:   Mrs Veronica Noseda - Sidaction
Additional Authors:  Dr Martin Duracinsky, Dr Cindy Kelemi, Dr Nthabiseng Phaladze, Dr Bruno Spire, Dr Tonya Taylor,
Aim: Purpose – Aim Quality of life – QoL – is not a recent issue: it has been an important issue for many years for doctors and it has been defined as the impact of the disease and the treatment on a patient. Since the 90’s, the development of instruments aimed at measuring QoL based on patient reported outcomes has enabled the identification of standards for evaluating therapeutics.
Method / Issue: Based on the example of the PROQOL – HIV study, we will discuss: - Why is it important to measure QoL and how can it be done? - What are the different instruments to measure QoL in HIV? - Why is there a QoL scale specific to HIV? - The methodology of instrument validation - What are the possible uses of this scale? Who will use it? Will it benefit PLWHIV/AIDS, doctors, Pharmaceutical firms? - Why a transnational scale? Is it possible to compare the QoL of people living in countries where the access to care and HAART is not the same? - What is the scope of this kind of scales? Is it possible to isolate factors that have an impact on QoL? Are they different depending on contexts? - What are the perspectives depending on countries and settings? Presentation The PROQOL-HIV questionnaire was developed to measure the health-related quality-of-life (HRQL) of People living with HIV/AIDS (PLWHA) in different cultures in the highly-active antiretroviral therapy era. This study presents the psychometric validation and, the conceptual model: the psychosocial and clinical factors impacting on HRQL. Methods: 830 patients were included in a cross-sectional survey in 8 countries: Australia, Brazil, Cambodia, China, France, Senegal, Thailand and USA. Item reduction was based on content, distribution of responses and factorial analysis. Reliability, construct and clinical validity with reference to biological markers and socio-demographic data. Results: The 39-item questionnaire (and 4 individual items including Care Satisfaction and Financial Impact) demonstrates consistent psychometric properties (60% variance explained, Cronbach alpha above 0.8, intrascale correlations above 0.5). Concurrent validity was demonstrated (MOS- HIV, EQ-5D). From 9 dimensions, 4 subscores were derived: Physical Health and Symptoms, Treatment Impact, Social and Intimate Relationships, Emotional Distress. Significant differences in HRQL scores according to symptoms, comorbidities, CD4 and CDC stage support our endpoint model. PROQOL-HIV dimensionality across countries is consistent with previous qualitative research. Western countries (early diagnosis and treatment, higher income) and emerging countries like Thailand and Brazil had better HRQL than China and Cambodia. Chinese and Khmer had lower HRQL scores (p< .001), particularly on physical health and symptoms, health concerns, and stigma dimension, which was highest in Senegal. Between-country differences are also reflected by significant correlations between PROQOL scores and external factors: frequency of symptoms (higher in Cambodia, China and Thailand), comorbidities (higher frequency of psychiatric disorders in Cambodia), and CD4 count (low in Chinese and Khmer patients).
Results / Comments: Speaker Martin Duracinsky, MD, PhD, Hôpital de Bicêtre, Internal Medicine and Infectious Diseases (Pr Delfraissy), France Discussants Cindy Kelemi, national coordinator at BONELA, Botswana Network on Ethics, Law and HIV/Aids, Gaborone, Botswana Nthabiseng A. Phaladze, RN, PhD, Rho and Tau Lambda-at-Large, Lecturer, University of Botswana, Department of Nursing Education, Gaborone, Botswana Bruno Spire, président of AIDES, French NGO, researcher in public health, INSERM – Institut National de la Santé et de la Recherche Médicale – ORS – Observatoire Régional de Santé, Marseille, France Tonya Taylor, medical anthropologist, Columbia University, New York, USA
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