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Health-Related Quality-of-Life Evaluation in HIV-Infected Patients

A Review of the Literature

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Summary

This article presents a review of the literature on health-related quality-of-life (HRQOL) measurement in HIV-infected patients by means of multidimensional self-report questionnaires. Since 1989, 11 HRQOL instruments have been used, the most frequently employed scales and items being derived from the Medical Outcomes Study. The 9 instruments that were evaluated for their internal consistency reliability and validity generally met the conventional levels of psychometric performance. Descriptive longitudinal and psychometric studies that examined the ability of HRQOL instruments to distinguish between diagnostic groups consistently showed that, over time, patients developed more symptoms and reported poorer physical, role and sexual functioning. Patients’ psychological functioning improved or remained at approximately the same level. Despite some methodological limitations, the 4 HRQOL studies performed as part of clinical trials provided valuable information for both patients and doctors about the impact of treatment with zidovudine, interferon-α or epoetin (recombinant human erythropoietin) on patients’ HRQOL. Future studies are needed that provide more information on the feasibility, stability and responsiveness of existing HRQOL instruments. In addition, future studies should focus on the natural history of HRQOL in HIV-infected patients, and on the impact of commonly prescribed prophylactic and antiretroviral drugs on patients’ HRQOL. There is an urgent need for translations and cultural adaptations of HRQOL instruments for use in differend HIV-infected populations, including women, children, intravenous drug users and patients from African and other developing countries.

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References

  1. Hessol NA, Koblin BA, van Griensven GJP, et al. Progression of human immuno-deficiency virus type 1 (HIV-l) infection among homosexual men in hepatitis B vaccine trial cohorts in Amsterdam, New York City, and San Francisco, 1978–1991. Am J Epidemiol 1994; 139: 1077–87

    PubMed  CAS  Google Scholar 

  2. Doyle D, Hanks G, MacDonald N. Introduction. In: Doyle D, Hanks G, MacDonald N, editors. Oxford textbook of palliative medicine. Oxford: Oxford University Press, 1993

    Google Scholar 

  3. Aaronson NK, Beckmann J, editors. The quality of life of cancer patients. New York: Raven Press, 1987

    Google Scholar 

  4. Ganz PA. Quality of life measures in cancer chemotherapy: methodology and implications. PharmacoEconomics 1994; 5: 376–88

    Article  PubMed  CAS  Google Scholar 

  5. Sullivan M, Ahlmen M, Bjelle A. Health status assessment in rheumatoid arthritis: I. Further work on the validity of the Sickness Impact Profile. J Rheumatol 1990; 17: 439–47

    PubMed  CAS  Google Scholar 

  6. Bendtsen P, Åkerlind I, Hörnquist JO. Assessment of quality of life in rheumatoid arthritis: methods and implications. PharmacoEconomics 1994; 5 (4): 286–98

    Article  PubMed  CAS  Google Scholar 

  7. Wenger NK, Mattson ME, Furberg CD, et al., editors. Assessment of quality of life in clinical trials of cardiovascular therapies. Atlanta (GA): Le Jacq Press, 1984

    Google Scholar 

  8. Croog SH, Levine S, Testa MA, et al. The effects of antihypertensive therapy on the quality oflife. N Engl J Med 1986; 314: 1657–64

    Article  PubMed  CAS  Google Scholar 

  9. Nerenz DR, Repasky DP, Whitehouse FW, et al. Ongoing assessment of health status in patients with diabetes mellitus. Med Care 1992; 30: 112–23

    Article  Google Scholar 

  10. Eiser C, Tooke JE. Quality of life evaluations in diabetes. PharmacoEconomics 1993; 4: 85–91

    Article  PubMed  CAS  Google Scholar 

  11. Cella DF, Tulsky DS. Measuring quality of life today: methodological aspects. Oncology 1990; 4: 29–38

    PubMed  CAS  Google Scholar 

  12. Aaronson NK, Meyerowitz BE, Bard M, et al. Quality of life research in oncology. Cancer 1991; 67: 839–43

    Article  PubMed  CAS  Google Scholar 

  13. Moinpour CM, Feigl P, Metch B, et al. Quality of life end points in cancer clinical trials: review and recommendations. J Natl Cancer Inst 1989; 81: 485–95

    Article  PubMed  CAS  Google Scholar 

  14. Tsevat J. Methods for assessing health-related quality of life in HIV-infected patients. Psychol Health 1994; 9: 19–30

    Article  Google Scholar 

  15. Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life. Med Care 1989; 27 (3 Suppl.): S217–32

    Article  Google Scholar 

  16. Bergner M, Bobbitt RA, Carter WB, et al. The sickness impact profile: development and final revision of a health status measure. Med Care 1981; 19: 787–805

    Article  PubMed  CAS  Google Scholar 

  17. McHorney CA, Ware JE, Raczek AE. The MOS 36-item ShortForm Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care 1993; 31: 247–63

    Article  PubMed  CAS  Google Scholar 

  18. Schag CAC, Ganz PA, Kahn B, et al. Assessing the needs and quality of life of patients with HIV infection: development of the HIV Overview of Problems Evaluation System (HOPES). Qual Life Res 1992; 1: 397–413

    Article  PubMed  CAS  Google Scholar 

  19. Vickrey BG, Hays RD, Graber J, et al. A health-related quality of life instrument for patients evaluated for epilepsy surgery. Med Care 1992; 30: 299–319

    Article  PubMed  CAS  Google Scholar 

  20. Fries JF, Spitz PW, Kraines RG, et al. The dimensions of health outcomes: the Health Assessment Questionnaire, disability and pain scale. J Rheumatol 1980; 9: 789–93

    Google Scholar 

  21. Aaronson NK, Ahmedzai S, Bergman B, et al. The EORTC QLQ-C30: a quality of life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 1993; 85: 365–76

    Article  PubMed  CAS  Google Scholar 

  22. Aaronson NK, Cull A, Kaasa S, et al. The EORTC modular approach to quality of life assessment in oncology. Int J Ment Health 1994; 23: 75–96

    Google Scholar 

  23. Cleary PD, Fowler Jr FJ, Weissman J, et al. Health-related quality of life in persons with acquired immune deficiency syndrome. Med Care 1993; 31: 569–80

    Article  PubMed  CAS  Google Scholar 

  24. Lenderking WR, Gelber RD, Cotton OJ. et al. Evaluation of the quality of life associated with zidovudine treatment in asymptomatic human immunodeficiency virus infection. N Engl J Med 1994; 330: 738–43

    Article  PubMed  CAS  Google Scholar 

  25. Gelber RD, Lenderking WR, Cotton DJ, et al. Quality of life evaluation in a clinical trial of zidovudine therapy in patients with mildly symptomatic HIV infection. Ann Intern Med 1992; 116: 961–6

    PubMed  CAS  Google Scholar 

  26. Lubeck DP, Fries JF. Changes in quality of life among persons with HIV infection. Qual Life Res 1992; 1: 359–66

    Article  PubMed  CAS  Google Scholar 

  27. De Boer JB, Sprangers MAG, Aaronson NK, et al. The feasibility, reliability and validity of the EORTC QLQ-C30 in assessing the quality of life of patients with asymptomatic HIV infection or AIDS (CDC IV). Psychol Health 1994; 9: 65–77

    Article  Google Scholar 

  28. Wu AW, Rubin HR, Mathews WC, et al. A health status questionnaire using 30 items from the Medical Outcomes Study: a preliminary validation in persons with early HIV infection. Med Care 1991; 29: 786–98

    Article  PubMed  CAS  Google Scholar 

  29. Lenderking WR, Worth JL, Beckett A. Quality of life assessment in HIV-infected psychiatric outpatients: perceived health, functional status, symptoms, and preferences for cardiopulmonary resuscitation. Psychol Health 1994; 9: 51–64

    Article  Google Scholar 

  30. Lamping DL. Methods for measuring outcomes to evaluate interventions to improve health-related quality of life in HIV infection. Psychol Health 1994; 9: 31–49

    Article  Google Scholar 

  31. Wachtel T, Piette J, Mor V, et al. Quality of life in persons with human immuno-deficiency virus infection: measurement by the Medical Outcomes Study instrument. Ann Intern Med 1992; 116: 129–37

    PubMed  CAS  Google Scholar 

  32. Burgess A, Dayer M, Catalan J, et al. The reliability and validity of two HIV-specific health-related quality of life measures: a preliminary analysis. AIDS 1993; 7: 1001–8

    Article  PubMed  CAS  Google Scholar 

  33. Ragsdale D, Morrow JR. Quality of life as a function of HIV classification. Nurs Res 1990; 30: 355–9

    Google Scholar 

  34. Lubeck DP, Fries JF. Health status among persons infected with human immunodeficiency virus: a community-based study. Med Care 1993; 31: 269–76

    Article  PubMed  CAS  Google Scholar 

  35. De Boer JB, van Dam FSAM, Sprangers MAG, et al. Longitudinal study on the quality oflife of symptomatic HIV-infected patients in a trial of zidovudine versus zidovudine and interferon- alpha. AIDS 1993; 7: 947–53

    Article  PubMed  Google Scholar 

  36. Wu A W, Mathews WC, Brysk LT, et al. Quality of life in a placebo-controlled trial of zidovudine in patients with AIDS and AIDS-related complex. J Acquir Immune Defic Syndr 1990; 3: 683–90

    PubMed  CAS  Google Scholar 

  37. Revicki DA, Brown RE, Henry DH, et al. Recombinant human erythropoietin and health-related quality of life of AIDS patients with anemia. J Acquir Immune Defic Syndr 1994; 7: 474–84

    PubMed  CAS  Google Scholar 

  38. Wu AW, Rubin HR, Mathews WC, et al. Functional status and well-being in a placebo-controlled trial of zidovudine in early symptomatic HIV infection. J Acquir Immune Defic Syndr 1993; 6: 452–8

    Article  PubMed  CAS  Google Scholar 

  39. Ganz PA, Schag CAC, Kahn B, et al. Describing the health-related quality of life impact of HIV infection: findings from a study using the HIV Overview of Problems Evaluation System (HOPES). Qual Life Res 1993; 2: 109–19

    Article  PubMed  CAS  Google Scholar 

  40. Kaplan RM, Anderson JP. The quality of well-being scale: rationale for a single quality of life index. In: Walker CS, editor. Quality of life: assessment and application. London: MTP Press, 1988: 51–78

    Google Scholar 

  41. Stewart AL, Hays RD, Ware Jr JE. The MOS short-form general health survey: reliability and validity in a patient population. Med Care 1988; 26: 724–35

    Article  PubMed  CAS  Google Scholar 

  42. Stewart AL, Ware Jr JE, editors. Measuring functioning and well-being: the medical outcomes study approach. Durham (NC): Duke University Press, 1992

    Google Scholar 

  43. Jette AM, Davies AR, Cleary PD, et al. The functional status questionnaire: its reliability and validity when used in primary care. J Gen Intern Med 1986; 1: 143–9

    Article  PubMed  CAS  Google Scholar 

  44. Winterking D, Crook T, Salama M, et al. A self-rating scale for assessing memory loss. Bethesda (MD): Memory Assessment Clinics Inc., 1986

    Google Scholar 

  45. Campbell A, Converse PE, Rogers WL. The quality of American life. New York: Russell Sage Foundation, 1976

    Google Scholar 

  46. Radloff LS. The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Meas 1977; 1: 385–401

    Article  Google Scholar 

  47. Schag CAC, Heinrich RL. Developing a comprehensive tool: the Cancer Rehabilitation Evaluation System. Oncology 1990; 4: 135–8

    PubMed  CAS  Google Scholar 

  48. Nunnally JC. Psychometric theory. 2nd ed. New York: McGraw-Hill,1978

    Google Scholar 

  49. Kerlinger FN. Foundations of behavioral research. 2nd ed. New York: Holt, Rinehart and Winston, 1973

    Google Scholar 

  50. Guyatt G, Walter S, Norman G. Measuring change over time: assessing the usefulness of evaluative instruments. J Chronic Dis 1987;40: 171–8

    Article  PubMed  CAS  Google Scholar 

  51. Guyatt GH, Deyo RA, Charlson M, et al. Responsiveness and validity in health status measurement: a clarification. J Clin Epidemiol 1989; 42: 403–8

    Article  PubMed  CAS  Google Scholar 

  52. Hays RD, Hadorn D. Responsiveness to change: an aspect of validity, not a separate dimension. Qual Life Res 1992; 1: 73–5

    Article  PubMed  CAS  Google Scholar 

  53. Deyo RA, Diehr P, Patrick DL. Reproducibility and responsiveness of health status measures: statistics and strategies for evaluation. Controlled Clin Trials 1991; 12 (4 Suppl.): 142S-58S

    Article  Google Scholar 

  54. Fowler FJ, Massagli MP, Weisman J, et al. Some methodological lessons for surveys of persons with AIDS. Med Care 1992; 30: 1059–66

    Article  PubMed  Google Scholar 

  55. MacNair DM, Lorr M, Droppelman LF. Manual for the profile of mood states. San Diego (CA): Educational and Industrial Testing Service, 1981

    Google Scholar 

  56. Fischl MA, Richman DD, Grieco MH, et al. The efficacy of azidothymidine (AZT) in the treatment of patients with AIDS and AIDS-related complex. N Engl J Med 1987; 317: 185–91

    Article  PubMed  CAS  Google Scholar 

  57. Frissen PH, van der Ende ME, ten Napel CH, et al. Zidovudine and interferon-alpha combination therapy versus zidovudine monotherapy in subjects with symptomatic human immunodeficiency virus type I infection. J Infect Dis 1994; 169: 1351–5

    Article  PubMed  CAS  Google Scholar 

  58. Fischl MA, Richman DD, Hansen N, et al. The safety and efficacy of zidovudine (AZT) in the treatment of subjects with mildly symptomatic human immuno-deficiency virus type I (HIV) infection. Ann Intern Med 1990; 112: 727–37

    PubMed  CAS  Google Scholar 

  59. Barker S, Tindall B, Carballo M. Quality of life and clinical trials in HIV infection [letter]. Lancet 1990; 335: 1045

    Article  PubMed  CAS  Google Scholar 

  60. Tarlov AR. Outcomes assessment and quality of life in patients with human immuno-deficiency virus infection. Ann Intern Med 1992; 116: 166–7

    PubMed  CAS  Google Scholar 

  61. Anderson RT, Aaronson NK, Wilkin D. Critical review of the international assessments of health-related quality of life. Qual Life Res 1993; 2: 369–95

    Article  PubMed  CAS  Google Scholar 

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Authors and Affiliations

  1. The Netherlands Cancer Institute, WHO Collaborating Centre on Quality of, Life Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands

    Josien B. de Boer &  Frits S. A. M. van Dam

  2. The Netherlands Cancer Institute, Amsterdam, The Netherlands

    Josien B. de Boer,  Frits S. A. M. van Dam & Mirjam A. G. Sprangers

  3. Erasmus University Rotterdam, Rotterdam, The Netherlands

    Josien B. de Boer

  4. University of Amsterdam, Amsterdam, The Netherlands

    Frits S. A. M. van Dam

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  1. Josien B. de Boer
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  2. Frits S. A. M. van Dam
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  3. Mirjam A. G. Sprangers
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de Boer, J.B., van Dam, F.S.A.M. & Sprangers, M.A.G. Health-Related Quality-of-Life Evaluation in HIV-Infected Patients. Pharmacoeconomics 8, 291–304 (1995). https://doi.org/10.2165/00019053-199508040-00004

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