Initial steps to developing the World Health Organization's Quality of Life Instrument (WHOQOL) module for international assessment in HIV/AIDS

This paper reports on the three initial steps taken to develop the World Health Organization's Quality of Life instrument (WHOQOL) module for assessment of persons living with HIV/AIDS (PLWHA). First, a consultation of international experts was convened to review the suitability of the generic WHOQOL-100 for assessment of PLWHA. The experts proposed additional facets that are specific to the lives of PLWHA. Second, 42 focus groups (N = 235) were conducted by six culturally diverse centres-comprising of PLWHA, informal carers and health professionals- to (1) review the adequacy of the WHOQOL for PLWHA, (2) review the additional facets proposed by the experts, and (3) write additional facets and items for a pilot instrument. Third, results of steps 1 and 2 were consolidated, and a total of 115 items, covering 25 new facets and sub-facets for assessment of QoL specific to PLWHA, were prepared for pilot testing. The new facets included symptoms of HIV, body image, sexual activities, work, social inclusion, disclosure, death and dying, and forgiveness. The implications of cross-cultural QoL assessment for PLWHA are discussed.