Quality of Life Assessment in People Living with HIV/AIDS: Clarifying the WHOQOL-HIV and WHOQOL-HIV-Bref Instruments

Abstract

Assessing the quality of life (QoL) of people living with HIV/AIDS has become increasing. From 1995 to 2003, more than 300 papers on the subject were published. This fact encourages researchers to question the existence of suitable assessment instruments. Virtually all existing instruments until 2003 had been developed in the USA (Skevington & O'Connell, 2003). To apply these instruments in countries in which English is not the vernacular language, the instruments were subjected to literal translations, without the worry of a cultural adaptation. In this wise, came the proposal to develop an instrument from sundry centers, located in different countries (Skevington & O'Connell, 2003). The fact that there is no consensus on the QoL concept is a major problem in developing instruments to assess the QoL, while it is not possible to state clearly what elements these instruments are assessing (Fleck, 2008). From this premise, the starting point to build the instrument for QoL assessment of the World Health Organization (WHO) was to conceptualize QoL. In the concept adopted, QoL is understood as “individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (The WHOQOL Group, 1998a, p. 25). In face of this concept, WHO embarked on building the World Health Organization Quality of Life (WHOQOL) instruments, which assess QoL globally, e.g. WHOQOL-100 and WHOQOL-bref, and due to specific aspects, e.g. WHOQOL-HIV, WHOQOL-OLD, and WHOQOL-SRPB. One of these instruments, the WHOQOL-HIV, used to assess the QoL of HIV carriers, is the object of this study. Starting from the fact that 95% of people infected with HIV did not live in the USA but in developing countries of Asia, Latin America, and sub-Saharan Africa, WHO has developed a tool to assess the QoL directed to such audience. The instrument was designed based on the premise that a multidisciplinary approach, involving centers in several countries, would allow for greater dissemination of the developed instrument (O'Connell, 2003). The WHOQOL-HIV is a complementary module for WHOQOL-100 instrument, and was also translated into other languages and validated in sundry studies, among which are a part of Starace et al. (2002), Zimpel & Fleck (2007), Saddki et al. (2009), Canavarro et al. (2011) and Mweemba et al. (2011).