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

Bruno Pedroso, Gustavo Luis Gutierrez, Edison Duarte, Luiz Alberto Pilatti and Claudia Tania Picinin *Universidade Estadual de Campinas – UNICAMP Brazil* 

#### **1. Introduction**

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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).

Quality of Life Assessment in People

**2.1 WHOQOL-100 scores calculation** 

have at least three valid items;

instrument items).


be an inversion of that facet to proceed the calculation;

**2.2 Questions and facets response scale conversion** 

remain the same in both normal and inverted scales.


same scale of facets. The results are also expressed on a scale from 0 to 100.

areas where such facets are found, the score of the latter is converted.

Living with HIV/AIDS: Clarifying the WHOQOL-HIV and WHOQOL-HIV-Bref Instruments 165

The results of the WHOQOL-100 implementation are expressed through the scores of each facet and domain. The WHOQOL-100 scoring procedure presents the following logic: - Verification of all those 100 questions completed with values between 1 and 5;




The WHOQOL-100 results are expressed in two scales, a variant scale between 4 and 20 points, due to the fact that the facets scores calculation is achieved by multiplying the average of questions that constitute each facet by four. Once each domain is calculated by the simple arithmetic average of facets that composes it. The results are expressed on the

The conversion of questions is used in order to standardize all the answers of the instrument, so that the most positive response is 5. Therefore, the most negative response must be 1. Thus, all questions of each facet are converted to the same scale, where the gradual increase in

In cases where all four questions that constitute a facet are arranged in inverted scale, that same logic is used, but only in the domain calculation. That is, the result of these facets is expressed in the original scale: without inversion (the closer to 1, the more positive the result; the closer to 5, the more negative the result). However, when calculating the scores of

For the conversion of the response scale of questions, the minimum value of the inverted scale question should be replaced by the maximum value of the normal scale question, and the maximum value of the inverted scale question should be replaced by a minimum value of the normal scale question. The same should occur with intermediate values, following this same logic. Thus, the only value that remains unchanged is the central value, which will

It is necessary to be attentive to this fact, because when comparing the results between the facets, the score of a facet with inverted scale cannot be directly compared to the score of a

response is equivalent in the same proportion to the increase in the result of the facet.

Notwithstanding the significant diffusion of the WHOQOL, questions concerning the calculation and analysis of the results of those instruments constitute a limitation for its use. In this context, we aimed here at clarifying the mechanism predetermined by the WHOQOL-HIV Group to calculate the WHOQOL-HIV and WHOQOL-HIV-bref instrument scores. Additionally, we proposed an alternative way to perform such calculations.
