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ISSQoL: A New Questionnaire for Evaluating the Quality of Life of People Living with HIV in the HAART Era*

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Abstract

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 α) 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.

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Authors and Affiliations

  1. Department of Drug Research and Evaluation, Istituto Superiore di Sanità, Rome, Italy

    R. Bucciardini, V. Fragola, R. Arcieri, M. Massella & S. Vella

  2. Università Cattolica del Sacro Cuore, Rome, Italy

    R. Murri & M. Fantoni

  3. I-CAB, Bologne, Italy

    M. Guarinieri

  4. Ospedale D. Cotugno, Naples, Italy

    F. Starace & L. Cafaro

  5. International Organization for Migration, Rome, Italy

    M. Martini

  6. LILA, Rome, Italy

    A. Vatrella

  7. Ospedale L. Sacco, Milan, Italy

    R. Grisetti & A. d’Arminio Monforte

  8. IRCCS L. Spallanzani, Rome, Italy

    C. Del Borgo

  9. Ospedale S. Bortolo, Vicenza, Italy

    A. Tramarin

  10. U.O. AIDS ASL, Rome, Italy

    D. Lorenzetti

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  1. R. Bucciardini
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  2. R. Murri
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  3. M. Guarinieri
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  7. L. Cafaro
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  9. R. Grisetti
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  17. S. Vella
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Correspondence to R. Bucciardini.

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All the authors of this paper belong to ISSQoL Group.

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Bucciardini, R., Murri, R., Guarinieri, M. et al. ISSQoL: A New Questionnaire for Evaluating the Quality of Life of People Living with HIV in the HAART Era*. Qual Life Res 15, 377–390 (2006). https://doi.org/10.1007/s11136-005-3212-1

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  • DOI: https://doi.org/10.1007/s11136-005-3212-1

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