Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on sleep in brain health

LIVE: Thursday 2nd May 2024, 18:00-19:30 (CEST)

Quality sleep is essential for health. But what happens to our brains when sleep patterns are disturbed? Join our experts to explore the interplay between sleep disruption and neurological diseases, and the questions that you need to be asking your patients to help you prevent the harmful effects of sleep deprivation.
ADVANCED SEARCH
Log in
Top
Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2017

Open Access 01-12-2017 | Review

Measuring quality of life among people living with HIV: a systematic review of reviews

Authors: Vanessa Cooper, Jane Clatworthy, Richard Harding, Jennifer Whetham, Emerge Consortium

Published in: Health and Quality of Life Outcomes | Issue 1/2017

Login to get access

Abstract

Aim

A systematic review of reviews was conducted to identify and appraise brief measures of health-related quality of life (HRQoL) that have been used in peer-reviewed research with people living with HIV.

Methods

The review was conducted in two stages: 1) search of electronic databases to identify systematic reviews of tools used to measure HRQoL in adults living with HIV, published since the year 2000; 2) selection of HRQol scales from those identified in the reviews. Inclusion criteria included scales that could be self-administered in 10 min or less, covering at least 3 domains of quality of life (physical function, social/role function and mental/emotional function). For generic scales, inclusion criteria included the availability of normative data while for HIV-specific scales, patient input into the development of the scale was required.

Results

Ten reviews met the inclusion criteria. Nine generic scales met the inclusion criteria: the EuroQol five dimensions questionnaire (EQ-5D); Health Utilities Index; McGill Quality of Life questionnaire; Medical Outcomes Study (MOS) Short Form (SF)-12; SF-36; World Health Organisation Quality of Life (WHOQOL- BREF), Questions of Life Satisfaction (FLZM) and SF-20. Available psychometric data supported the EQ-5D and SF-36. Seven HIV-specific scales met the inclusion criteria: the AIDS Clinical Trials Group (ACTG)-21; HIV-QL-31; MOS-HIV; Multidimensional Quality of Life Questionnaire for Persons with HIV/AIDS (MQOL-HIV), PROQOL-HIV, Symptom Quality of Life Adherence (HIV-SQUAD) and the WHOQOL-HIV BREF. Of the HIV -specific measures, the MOS-HIV was considered to have the most well-established psychometric properties, however limitations identified in the reviews included insufficient input from people living with HIV in the development of the scale, cross-cultural relevance and continued applicability. Two relatively new measures, the WHOQOL-HIV BREF and PROQOL-HIV, were considered to have promising psychometric properties and may have more relevance to people living with HIV.

Conclusion

The findings highlight the need for further validation of HRQoL measures in people living with HIV. The choice of one measure over another is likely to be influenced by the purpose of the quality of life assessment and the domains of HRQoL that are most relevant to the specific research or clinical question.
Literature
1.
Nakagawa F, Lodwick RK, Smith CJ, et al. Projected life expectancy of people with HIV according to timing of diagnosis. AIDS. 2012;26(3):335–43.CrossRefPubMed
2.
Miners A, Phillips A, Kreif N, et al. Health-related quality-of-life of people with HIV in the era of combination antiretroviral treatment: a cross-sectional comparison with the general population. Lancet HIV. 2014;1(1):e32–40.CrossRefPubMed
3.
Drewes J, Gusy B, Von U. More than 20 years of research into the quality of life of people with HIV and AIDS - a descriptive review of study characteristics and methodological approaches of published empirical studies. Journal of the International Association of Providers of AIDS Care. 2013;12(1):18–22.CrossRefPubMed
4.
Clayson DJ, Wild DJ, Quarterman P, Duprat-Lomon I, Kubin M, Coons SJA. A comparative review of health-related quality-of-life measures for use in HIV/AIDS clinical trials. PharmacoEconomics. 2006;24(8):751–65.CrossRefPubMed
5.
Bakas T, McLennon SM, Carpenter JS, et al. Systematic review of health-related quality of life models. Health Qual Life Outcomes. 2012;10(1):1–12.CrossRef
6.
7.
Fayers P, Machin D. Quality of life: the assessment, analysis and interpretation of patient reported outcomes. Second edition ed. Chichester: Wiley; 2007.CrossRef
8.
World Health Organisation. The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41(10):1403–9.CrossRef
9.
10.
Wu AW, Hanson KA, Harding G, et al. Responsiveness of the MOS-HIV and EQ-5D in HIV-infected adults receiving antiretroviral therapies. Health Qual Life Outcomes. 2013;11:42.CrossRefPubMedPubMedCentral
11.
Simpson KN, Hanson KA, Harding G, et al. Patient reported outcome instruments used in clinical trials of HIV-infected adults on NNRTI-based therapy: a 10-year review. Health Qual Life Outcomes. 2013;11(1)
12.
Gakhar H, Kamali A, Holodniy M. Health-related quality of life assessment after antiretroviral therapy: a review of the literature. Drugs. 2013;73(7):651–72.CrossRefPubMedPubMedCentral
13.
Robberstad B, Olsen JA. The health related quality of life of people living with HIV/AIDS in sub-Saharan Africa - a literature review and focus group study. Cost Effectiveness and Resource Allocation. 2010;8:5.CrossRefPubMedPubMedCentral
14.
Smith V, Devane D, Begley CM, Clarke M. Methodology in conducting a systematic review of systematic reviews of healthcare interventions. BMC Med Res Methodol. 2011;11(1):15.CrossRefPubMedPubMedCentral
15.
Moher D, Liberati A, Tetzlaff J, Altman DG. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. BMJ. 2009;339
16.
17.
Carabin H, Sonleitner NK, Keesee M, Shinault K. Quality of life measurement tools for people living with HIV/AIDS. Journal of HIV/AIDS & Social Services. 2008;7(1):71–83.CrossRef
18.
Colautti M, Palchik V, Botta C, Salamano M, Traverso ML. Review of questionnaires to assess health related quality of life in HIV patients [Spanish] revision de cuestionarios para evaluar calidad de vida relacionada a la salud en pacientes VIH/Sida. Acta Farm Bonaer. 2006;25(1):123–30.
19.
Davis EA, Pathak DS. Psychometric evaluation of four HIV disease-specific quality-of-life instruments. Ann Pharmacother. 2001;35(5):546–52.CrossRefPubMed
20.
Skevington SM, O'Connell KA. Measuring quality of life in HIV and AIDS: a review of the recent literature. Psychol Health. 2003;18(3):331–51.CrossRef
21.
Nelson E, Wasson J, Kirk J, et al. Assessment of function in routine clinical practice: description of the COOP chart method and preliminary findings. J Chronic Dis. 1987;40(Suppl 1):55S–69S.CrossRefPubMed
22.
23.
EuroQol Group. EuroQol -a new facility for the measurement of health-related quality of life. Health Policy. 1990;16(3):199–208.CrossRef
24.
Henrich G, Herschbach P. Questions on life satisfaction (FLZM) – a short questionnaire for assessing subjective quality of life. Eur J Psychol Assess. 2000;16(3):150–9.CrossRef
25.
Horsman J, Furlong W, Feeny D, Torrance G. The health utilities index (HUI): concepts, measurement properties and applications. Health Qual Life Outcomes. 2003;1:54.CrossRefPubMedPubMedCentral
26.
Cohen SR, Hassan SA, Lapointe BJ, Mount BM. Quality of life in HIV disease as measured by the McGill quality of life questionnaire. AIDS. 1996;10(12):1421–7.CrossRefPubMed
27.
Ware JE Jr, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–33.CrossRefPubMed
28.
Ware JE Jr, Sherbourne CD, Davies AR. Developing and testing the MOS 20-item short-form health survey: a general population application. In: Stewart AL, Ware JE, editors. Measuring functioning and well-being: the medical outcomes study approach. Durham, NC: Duke University Press; 1992. p. 277–90.
29.
Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473–83.CrossRefPubMed
30.
McHorney CA, Ware JE Jr, Raczek AE. The MOS 36-item short-form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care. 1993;31(3):247–63.CrossRefPubMed
31.
McHorney CA, Ware JE Jr, JF L, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med Care. 1994;32(1):40–66.CrossRefPubMed
32.
Skevington SM, Lotfy M, O'Connell KA, Group W. The World Health Organization’s WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res. 2004;13(2):299–310.CrossRefPubMed
33.
WHOQOL Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL group. Psychol Med. 1998;28(3):551–8.CrossRef
34.
35.
Leplege A, Rude N, Ecosse E, Ceinos R, Dohin E, Pouchot J. Measuring quality of life from the point of view of HIV-positive subjects: the HIV-QL31. Qual Life Res. 1997;6(6):585–94.CrossRefPubMed
36.
Wu AW. MOS-HIV health survey users manual. 1999. File:///C:/users/Jane/downloads/MOS_HIV_Health_Survey.Pdf. (Accessed March 2016).
37.
Smith KW, Avis NE, Mayer KH, Swislow L. Use of the MQoL-HIV with asymptomatic HIV-positive patients. Qual Life Res. 1997;6(6):555–60.CrossRefPubMed
38.
Duracinsky M, Herrmann S, Berzins B, et al. The development of PROQOL-HIV: an international instrument to assess the health-related quality of life of persons living with HIV/AIDS. Journal of acquired immune deficiency syndromes (1999). 2012;59(5):498–505.CrossRef
39.
O'Connell KA, Skevington SM. An international quality of life instrument to assess wellbeing in adults who are HIV-positive: a short form of the WHOQOL-HIV (31 items). AIDS Behav. 2012;16(2):452–60.CrossRefPubMed
40.
Spire B, Arnould B, Barbier F, et al. Simplification and first validation of a short battery of patient questionnaires for clinical management of HIV-infected patients: the HIV-SQUAD (symptom quality of life adherence) questionnaire. HIV clinical trials. 2009;10(4):215–32.CrossRefPubMed
41.
Jenkinson C, Stewart-Brown S, Petersen S, Paice C. Assessment of the SF-36 version 2 in the United Kingdom. J Epidemiol Community Health. 1999;53(1):46–50.CrossRefPubMedPubMedCentral
42.
Duracinsky M, Lalanne C, Le Coeur S, et al. Psychometric validation of the PROQOL-HIV questionnaire, a new health-related quality of life instrument-specific to HIV disease. Journal of acquired immune deficiency syndromes (1999). 2012;59(5):506–15.CrossRef
43.
Huang IC, Frangakis C, Atkinson MJ, et al. Addressing ceiling effects in health status measures: a comparison of techniques applied to measures for people with HIV disease. Health Serv Res. 2008;43(1 Pt 1):327–39.PubMedPubMedCentral
44.
Tran BX, Ohinmaa A, Nguyen LT. Quality of life profile and psychometric properties of the EQ-5D-5L in HIV/AIDS patients. Health Qual Life Outcomes. 2012;10:132.CrossRefPubMedPubMedCentral
45.
Canavarro MC, Pereira M. Factor structure and psychometric properties of the European Portuguese version of a questionnaire to assess quality of life in HIV-infected adults: the WHOQOL-HIV-Bref. AIDS Care. 2012;24(6):799–807.CrossRefPubMed
46.
Pereira M, Martins A, Alves S, Canavarro MC. Assessing quality of life in middle-aged and older adults with HIV: psychometric testing of the WHOQOL-HIV-Bref. Qual Life Res. 2014;23(9):2473–9.CrossRefPubMed
47.
Hsiung PC, Fang CT, CH W, et al. Validation of the WHOQOL-HIV BREF among HIV-infected patients in Taiwan. AIDS Care. 2011;23(8):1035–42.CrossRefPubMed
48.
Saddki N, Noor M, Norbanee T, et al. Validity and reliability of the Malay version of WHOQOL-HIV BREF in patients with HIV infection. AIDS Care. 2009;21(10):1271–8.CrossRefPubMed
49.
50.
Nikooseresht Z, Rimaz S, Asadi-Lari M, Nedjat S, Merghati-Khoee E, Saiepour N. Reliability and validity of the Iranian version of the human immunodeficiency virus specific World Health Organization quality of life BREF questionnaire. Journal of Biostatistics and Epidemiology. 2015;1(1):8.
51.
Ming Z, Prybylski D, Cheng F, et al. Two-year prospective cohort study on quality of life outcomes among people living with HIV after initiation of antiretroviral therapy in Guangxi, China. J Assoc Nurses AIDS Care. 2014;25(6):603–13.CrossRefPubMed
52.
Duracinsky M, Lalanne C, Goujard C, et al. Electronic versus paper-based assessment of health-related quality of life specific to HIV disease: reliability study of the PROQOL-HIV questionnaire. J Med Internet Res. 2014;16(4):e115.CrossRefPubMedPubMedCentral
53.
Millard T, Agius PA, McDonald K, Slavin S, Girdler S, Elliott JH. The positive outlook study: a randomised controlled trial evaluating online self-management for HIV positive gay men. AIDS Behav. 2016;
54.
Pereira M, Canavarro MC. Reliability and validity of the European Portuguese version of the quality of life index EUROHIS-QOL-8 in HIV-infected patients. Revista Portuguesa de Saúde Pública. 2015;33(2):183–7.CrossRef
55.
Peterman AH, Cella D, Mo F, McCain N. Psychometric validation of the revised functional assessment of human immunodeficiency virus infection (FAHI) quality of life instrument. Qual Life Res. 1997;6(6):572–84.CrossRefPubMed
56.
Beal MW, Nield-Anderson L. Acupuncture for symptom relief in HIV-positive adults: lessons learned from a pilot study. Altern Ther Health Med. 2000;6(5):33–42.PubMed
57.
Webb A, Norton M. Clinical assessment of symptom-focused health-related quality of life in HIV/AIDS. J Assoc Nurses AIDS Care. 2004;15(2):67–81.CrossRefPubMed
58.
Metadata
Title
Measuring quality of life among people living with HIV: a systematic review of reviews
Authors
Vanessa Cooper
Jane Clatworthy
Richard Harding
Jennifer Whetham
Emerge Consortium
Publication date
01-12-2017
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2017
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-017-0778-6

Other articles of this Issue 1/2017

Health and Quality of Life Outcomes 1/2017 Go to the issue

Research

Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources

Research

Quality of life profile of general Vietnamese population using EQ-5D-5L

Research

Reliability and validity of the Chinese version of the autoimmune bullous disease quality of life (ABQOL) questionnaire

Research

Health utilities using SF-6D scores in Japanese patients with chronic hepatitis C treated with sofosbuvir-based regimens in clinical trials

Research

Developing a dementia-specific health state classification system for a new preference-based instrument AD-5D

Research

Psychometric properties of the Press Ganey® Outpatient Medical Practice Survey