Preliminary development of the World Health Organsiation's Quality of Life HIV instrument (WHOQOL-HIV): analysis of the pilot version

The assessment of quality of life (QoL) is central to understanding how people's lives are affected by HIV infection. A reliable and valid measurement tool developed for cross-cultural use will be important in evaluating the global impact of the disease. This paper reports on the development and preliminary assessment of the WHOQOL-HIV pilot instrument that is designed for use with the WHOQOL-100 for persons living with HIV and AIDS (PLWHA). In this study, 900 people with a mean age of 32 from six culturally diverse sites completed the WHOQOL-100 along with 115 HIV specific items. Respondents were HIV asymptomatic (23%), HIV symptomatic (23%), had AIDS (20%) or were well (34%). Analyses to select the best items from the piloted instrument resulted in the inclusion of 33 items covering 12 new facets for a field trial version of the WHOQOL-HIV instrument; e.g. symptoms of HIV, body image, social inclusion, death and dying, and forgiveness. The results indicate excellent internal consistency for the scale (alpha = 0.98) and its domains (alpha = 0.87-0.94). For PLWHA, pain and discomfort, positive feelings, dependence on medication, sexual activity, financial resources and spiritual connection were particularly poor, indicating that the severest impact of HIV extends beyond physical well-being to the psycho-social-spiritual and environmental areas of QoL. Comparisons using ANOVA showed that persons who are at later stages of HIV infection, or are currently ill report poorer QoL than those that were well (p<0.01). Women report poorer QoL than men for almost every facet (p<0.01) and older persons (>30) reported lower negative feelings, and better social inclusion, spiritual connection, forgiveness and spiritual experience than younger persons. Finally, those with no education, or only primary education showed some of the poorest means. It is concluded that these new items and facets add value for measurement of QoL in PLWHA. (C) 2003 Elsevier Science Ltd. All rights reserved.