An International Quality of Life Instrument to Assess Wellbeing in Adults Who are HIV-Positive: A Short Form of the WHOQOL-HIV (31 items) (original) (raw)
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Global View of HIV Infection, 2011
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
Dr Samuel Kalibala was a key member of the technical team that developed the instrument—THE WHOQOL HIV GROUP World Health Organization, Geneva, Switzerland. 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 (N0/235) 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.
Archives of public health = Archives belges de santé publique, 2014
As infection with the Human Immunodeficiency Virus (HIV) has evolved to a chronic disease, perceived health-related quality of life (HRQoL) is becoming a prominent and important patient-reported outcome measure in HIV care. Literature discusses different factors influencing HRQoL in this population, however, currently no consensus exists about the main determinants. In this review a clear, up-to-date overview of the determinants influencing HRQOL among people living with HIV is provided. All studies published before July 2013 that identified determinants of HRQoL among people living with HIV in high-income countries, were considered in this narrative review. PubMed, Web of Science and The Cochrane Library were consulted using the keywords 'determinants', 'quality of life', 'HIV' and 'AIDS'. To be included, studies should have reported overall health and/or physical/mental health scores on a validated instrument and performed multivariable regression a...
Aids Care-psychological and Socio-medical Aspects of Aids/hiv, 2011
The aim of the current study was to examine the factor structure and the psychometric properties of the European Portuguese version of the World Health Organization's Quality of Life Instrument in HIV Infection (WHOQOL-HIV-Bref). Exploratory factor analysis (EFA) and confirmatory factors analysis (CFA) were conducted on self-reported WHOQOL-HIV-Bref data from 1196 HIV-positive patients, frequenting the main departments of infectious diseases in Portugal. An EFA with a randomly chosen subsample suggested a five-domain structure for the WHOQOL-HIV-Bref. CFA validated this five-domain structure in a separate subsample, but also revealed that the original six-domain model fit the data. Accordingly, it was decided to use the original factor structure. Based on the original six domain structure, the European Portuguese version of WHOQOL-HIV-Bref showed acceptable internal consistency (alpha range: 0.61–0.80 across domains). All domains (with exception of Spirituality) clearly discriminated subjects considering the CD4+ T cell count subgroups. These findings revealed additional insights about the factor structure of the WHOQOL-HIV-Bref and provided evidence in support of the original six-domain structure. This instrument showed to be a cross-culturally valid measure of quality of life, particularly useful when addressing the impact of HIV not only on physical and psychological well-being but also on several domains beyond health.
International Journal of Environmental Research and Public Health, 2020
Quality of life (QOL) has been considered as an important outcome indicator in holistic care for HIV-infected people, especially as HIV/AIDS transforms from a fatal illness to a chronic condition. This study aimed to identify trends and emerging topics among research concerning the QOL of people living with HIV/AIDS (PLWHA). The analyzed data were English papers published from 1996 to 2017, searched and extracted from the Web of Science Core Collection. Collaborations between countries and the correlation between the keywords were visualized by VOSviewer while the abstracts’ content was analyzed using exploratory factor analysis and Jaccard’s’ similarity index. There has been an increase in both the number of publications and citations. The United Nations of America leads in terms of paper volume. The cross-nation collaborations are mainly regional. Despite a rather comprehensive coverage of topics relating to QOL in PLWHA, there has evidently been a lack of studies focusing on soci...
Validation of the quality of life scale: living with HIV
Journal of Advanced Nursing, 1998
Validation of the quality of life scale: living with HIV A grounded theory of Salvaging Quality of Life provided the conceptual framework for the development of the Living with HIV scale which was validated in this study. The HIV+ convenience sample (n=187) was 66% male, with a mean age of 40·6 years, 69% African-American, and with an average CD4 count of 229 mm3. A principal components factor analysis with varimax rotation was conducted on the final 32-item scale and nine factors with Eigenvalues >1 explained 60% of the variance. A second order factor analysis of these nine factors resulted in a two factor solution (HIV Struggles and HIV Reverence) which explained 49·4% of the variance. Cronbach alpha reliability coefficient for the total scale was 0·84. Differences between gender, ethnicity, education and presence of an AIDS diagnosis, and quality of life, were explored. Females had higher total scores which suggested they had a more positive quality of life than males. The Living with HIV scale can be used as a method of obtaining input from patients for care planning and for evaluating the effectiveness of nursing care intervention using quality of life as an outcome of care.
Objective: To design a Health-related Quality of Life (HRQoL) instrument for HIV-infected people in the era of highly active antiretroviral therapy (HAART). Methods: The self-administered questionnaire was developed by an Italian network including researchers, physicians, people living with HIV, national institutions and community-based organizations (CBO) through several steps: (1) review of existing HRQoL literature and questionnaires for HIV-infected people; (2) selection of relevant domains measuring HRQoL in HIV-infected people, and identification of new domains related to new aspects of HRQoL concerning HAART-treated individuals; (3) conduction of two pre-test analyses in independent groups of Italian HIV-positive people (n @ 100) distributed throughout the country. The objectives of the first pre-test were to verify the usefulness of the questionnaire, to construct a form easily understandable by everyone, to define the domains and their significance; the second pre-test aimed at evaluating and reshaping the questionnaire based on a statistical analysis of the outcomes of first pre-test; (4) validation analysis. A large cohort of people with HIV infection was recruited for the last step. Results: The internal consistence reliability (Cronbach's a) was ‡0.70 for all domains. Most domains had Cronbach's coefficient >0.80. All domains demonstrated convergent and discriminant validity. The final version of ISSQoL includes two sections: HRQoL Core Evaluation Form (9 domains) and Additional Important Areas for HRQoL (6 domains). The ISSQoL was administered together with two additional forms: a Daily Impact of Symptoms Form and a Demographic Information Form. The Additional Important Areas for HRQoL include social support, interaction with medical staff, treatment impact, body changes, life planning, and motherhood/fatherhood. Conclusion: The data reported in the present paper provide preliminary evidence of the reliability and validity of the ISSQoL questionnaire for the measurement of HRQoL in HIV-infected people. The direct involvement of HIV-positive people in all the phases of the project was a key aspect of our work.