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

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).


Introduction
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).
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. I n t h i s c o n t e x t , w e a i m e d h e r e a t c l a r ifying 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.

WHOQOL-100
The development of an instrument for evaluation of quality of life purposed by WHO was conducted in 15 centers simultaneously, based in 14 countries. After developing the project WHOQOL, new centers were built. Currently WHOQOL instruments are available in over 50 languages (WHO Field Center for Quality of Life of Bath, 2008). The development methodology of WHOQOL was sectioned into four major stages: clarifying the concept of quality of life, qualitative pilot study, development of a pilot and finally, field implementation. For the integrated centers, after the completion of the instrument, a protocol was established which consisted in its translation, preparation of the test pilot, development of the response scales and administration of the pilot (The WHOQOL Group, 1998a). All questions of WHOQOL-100 are closed. It was used a five-point Likert scale, ranging from 1 to 5. These extremes represent 0% and 100%, respectively. There are four different types of response scales, as can be seen in

WHOQOL-100 scores calculation
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; -Reversal of the 18 questions whose answer scale is inverted; -Scores of facets calculation from the simple arithmetic average of questions that compose each facet, followed by a multiplication by four. The multiplication by four is used so that, in case of a question has not been answered, the score of a facet compensates the invalidation of the question through the product by the number of valid questions that the facet should have. It will be computed only those aspects that have at least three valid items; -Scores of each domain are calculated through the simple arithmetic average of the facets scores that compose each area. In domains composed of up to five facets, this will be calculated only if the number of facets not calculated is not equal to or greater than two. In domains consisting of more than five facets, the domain will be calculated only if the number of facets not calculated is not equal to or greater than three. In the case of facets in reversed scale (all questions within the facet have reversed response scale), there will be an inversion of that facet to proceed the calculation; -Scores of domains and facets are converted to a scale from 0 to 100; -Total number of items answered by each respondent is counted. In the calculation are computed only those respondents who completed at least 80 items correctly (80% of the instrument items). 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 same scale of facets. The results are also expressed on a scale from 0 to 100.

Questions and facets response scale conversion
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 response is equivalent in the same proportion to the increase in the result of the facet. 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 areas where such facets are found, the score of the latter is converted. 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 remain the same in both normal and inverted scales. 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 www.intechopen.com facet with normal scale. The answers 1, 2, 3, 4 and 5 are to take the values 5, 4, 3, 2 and 1, respectively. The same procedure is used in the conversion of inverted facets, where the scores 4, 8, 12, 16 and 20 are to take the values 20, 16, 12, 8 and 4, respectively.

WHOQOL-100 questions, domains and facets
Composed by 100 questions, the WHOQOL-100 is sectioned into 24 groups of four questions each, receiving the name of "facets". The group of facets constitutes a "domain". Unlike the composition of facets, the six WHOQOL-100 domains are not constituted by the same number of facets, and may vary from one to eight. The questions that compose WHOQOL-100 are not arranged in the questionnaire in a logical sequence by domain or facet. They are grouped by type of answer scale. The distribution of WHOQOL-100 facets and areas are listed in Table 2:

DOMAINS FACETS
Domain I -Physical WHOQOL-100 has a facet that is not included in any domain, the facet Overall Quality of Life and General Health Perceptions (The WHOQOL Group, 1998b). This aspect deals with a self-assessment of quality of life, where the respondents express their point of view concerning their satisfaction with their lives, health and quality of life.

Short version of WHOQOL-100 (WHOQOL-bref)
Aiming at providing a tool that demand less time to its filling out, and with satisfactory psychometric characteristics, the WHOQOL Group developed the short version of WHOQOL-100, the WHOQOL-bref (The WHOQOL Group, 1996). The WHOQOL-bref is composed of 26 questions -two questions on self-assessment of quality of life and 24 issues representing each facet of WHOQOL-100. To compound the questions of WHOQOL-bref, it was selected the question of each facet that present the highest correlation with the average score of all facets (The WHOQOL Group, 1998c). After the selection of issues, an analysis was conducted to see if they, factually, represented the corresponding facets. In six facets, the question selected was replaced by another question of the corresponding facet, for, under the bias of experts, there was another question that could best define these six facets (The WHOQOL Group, 1998c  The calculation of scores of WHOQOL-bref follows the same logic of WHOQOL-100, except for the calculation of scores of facets. In WHOQOL-bref each facet is represented by a single question, and therefore the scores of facets are not calculated (The WHOQOL Group, 1996).

How much are you bothered by any unpleasant physical problems related to your HIV infection?
To what extent do you fear possible future (physical) pain?
To what extent do you feel any unpleasant physical problems prevent you from doing things that are important to you?
To what extent are you bothered by fears of developing any physical problem?

Social Inclusion
To what extent do you feel accepted by the people you know?

How often do you feel you are discriminated against because of your health condition?
To what extent do you feel accepted by your community?
How much do you feel alienated from those around you?

How much do you blame yourself for your HIV infection?
To  The syntax for calculation of WHOQOL-HIV domain and facets' score, correcting the error reported by Pedroso et al. (2010), is the following:

STEPS WHOQOL-HIV SYNTAX
Check all 120 items from assessment have a range of 1-5  Reversal of all the questions whose answers scale is inverted. Concerning the facets in inverted scale, all the questions pertaining to these facets are individually inverted; -Scores of facets are calculated from the sum of the four questions of each facet, followed by a division by four, being represented in a scale of 1 to 5; -Scores of domains are calculated by the sum of the scores of "n" facets that compound each area, divided by the number of the domain facets. The result is multiplied by four, being represented in a scale of 4 to 20; Contrarily to WHOQOL-100, the scores of domains and facets represent the mean of these variables only when all the belonging items to these are correctly punctuated. The score of facets is calculated since these presents one or more answered question, while the score of domains is calculated since these owns at least one facet that has been scored. The scores are not converted to a 0-100 scale. The exclusion criterion for individuals who answered incorrectly or doesn't answer more than 20% of total items from instrument does not exist on WHOQOL-HIV syntax.

WHOQOL-HIV-bref
Under the same reason for the development of WHOQOL-bref, the WHOQOL Group developed an abbreviated version of WHOQOL-HIV. The WHOQOL-HIV-bref is based on WHOQOL-bref, in a way each facet is represented by one single question. The 26 questions of WHOQOL-bref are repeated in WHOQOL-HIV-bref, being added to these five questions that represent the additional facets of WHOQOL-HIV (The WHOQOL-HIV Group, 2002). Contrary to what occurs in WHOQOL-bref, the facets belonging to the domains Level of Independence and Spiritual/Religion/Personal Beliefs are not incorporated to the Physical and Psychological domains, having, therefore, the same configuration of the domains of WHOQOL-HIV, presenting the following configuration:

Domain I -Physical
To   The WHOQOL-HIV-bref syntax's textual transcription presents the following configuration: -Verification of all those 31 questions completed with values between 1 and 5; -Reversal of all the questions whose answers scale is inverted; -Scores of domains are calculated by the sum of the scores of "n" questions that compound each area, divided by the number of the domain questions. The result is multiplied by four, being represented in a scale of 4 to 20; As can be realized, just as WHOQOL-HIV, the WHOQOL-HIV-bref's Syntax presents the same present fragility found in WHOQOL-HIV regarding the domains and facets score calculation, because it's not accomplished the arithmetic mean of domain items. There is not also the conversion of domains and facets score for a 0-100 scale. Lastly, and is not existing the criteria of exclusion of individuals who doesn't answer or answered incorrectly a number of questions higher than 20% from the total instrument items.

Tools for the calculation of scores and descriptive statistics of WHOQOL-HIV and WHOQOL-HIV-bref instruments
To obtain the results to apply the WHOQOL instruments, WHOQOL Group recommends the use of SPSS software, a statistical software program that requires specific expertise for its use and is not for free distribution. Looking for the removal of such limitations, tools were built from the software Microsoft Excel, a software program for broad accessibility, to calculate scores and descriptive statistics for WHOQOL-HIV and for WHOQOL-HIV-bref. Such tools were made in the same manner as the tool developed by Pedroso et al. (2009) to calculate scores and descriptive statistics of WHOQOL-100.
The tools proposed on this study automatically perform all calculations in the incipient syntaxes provided by the WHOQOL-HIV Group. The researchers who use it need only to fill in the specified cells the answers given by respondents. After data insertion, to use the results of theirs research, researcher may copy the individual scores for each respondent, results of descriptive statistics, and graphics; however, without changing such results. Is allowed to insert and edit values just in the area to tabulate the answers of respondents. To validate such tools, simulations were performed with real data applications of each of the WHOQOL-HIV and WHOQOL-HIV-bref instrument, comparing the results by using the proposed tools with those from SPSS. The results from both software programs were exactly the same, thus ensuring the reliability of tools, which are object of this study. The tools were tested on different versions of the Microsoft Office: 2000, XP, 2003, 2007and 2010. It was found that they are compatible with all versions tested, without differences in the results. The tools are available for download in the website: http://www.brunopedroso.com.br/whoqol-hiv(en). html.

Conclusions
Although the WHOQOL-HIV and WHOQOL-HIV-bref instruments are respectively additional modules for WHOQOL-100 and WHOQOL-bref instruments, the syntax of these instruments are not entirely derivative from its precursor syntax. Despite the widespread distribution and use of the WHOQOL-HIV and WHOQOL-HIV-bref, the difficulty to interpret the instrument syntax limits in choosing to use such tools. Additionally, the WHOQOL Group interposition in making the syntax to calculate the WHOQOL scores with SPSS (a relatively high cost software program and which requires specific expertise for use) encourages another imbroglio, restricting the use of WHOQOL instruments. Facing this struggle, we here investigate the instruments in question to facilitate their interpretation and use. Looking for the removal of the previously described limitations, the syntaxes are transcribed textually, detailing all the steps used to obtain the results from WHOQOL-HIV and WHOQOL-HIV-bref instrument. Were also built tools from Microsoft Excel 2003 software to calculate the scores and descriptive statistics of such instruments, in which the researcher is responsible only for data tabulation. The calculation is carried out automatically. The developed tools were tested and proved compatible in the versions 2000, XP, 2007 and 2010 of Microsoft Excel. The results returned by the tools were compared by using real application data of WHOQOL-HIV and WHOQOL-HIV-bref instruments, with the results returned by SPSS, following the parameters established by the WHOQOL-HIV Group. The results were identical to both instruments. We conclude that, despite being globally disseminated instruments, developed under a rigorous methodology, the instruments produced by the WHOQOL-HIV Group show limitations. Expecting to facilitate its use, was made an approach with a focus on clarifying these instruments. In this wise, we aimed to enable greater accessibility of the results promoted by the instruments, object of study here, thus expanding the investigation involving QoL empirical reality of people living with HIV/AIDS.