Preliminary development of the World Health Organisation'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 previous termHIVnext term 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 previous termWHOQOL-HIVnext term pilot instrument that is designed for use with the previous termWHOQOLnext term-100 for persons living with previous termHIVnext term and AIDS (PLWHA). In this study, 900 people with a mean age of 32 from six culturally diverse sites completed the previous termWHOQOLnext term-100 along with 115 previous termHIVnext term specific items. Respondents were previous termHIVnext term asymptomatic (23%), previous termHIVnext term 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 previous termWHOQOL-HIVnext term instrument; e.g. symptoms of previous termHIV,next term body image, social inclusion, death and dying, and forgiveness. The results indicate excellent internal consistency for the scale (α=0.98) and its domains (α=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 previous termHIVnext term 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 previous termHIVnext term infection, or are currently ill report poorer QoL than those that were well (p30) 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.