Skip to main content


Commentary on using the SF-36 or MOS-HIV in studies of persons with HIV disease


The purpose was to compare and comment on use of the SF-36 and MOS-HIV instruments in studies of persons with HIV disease. Three medical information databases were searched to identify examples of HIV studies that included the MOS-HIV or SF-36. Thirty-nine and 14 published articles were identified for illustration in comparing the use of the MOS-HIV and SF-36 in HIV disease, respectively. Support for the reliability and construct validity of the MOS-HIV and SF-36 was found. Ceiling and floor effects were reported for both the MOS-HIV and SF-36; however, ceiling effects were more common for the MOS-HIV, in part due to fewer items in the physical, social, and role functioning domains. The MOS-HIV measures three domains hypothesized to be associated with the health deterioration of HIV disease not measured by the SF-36; however, these domains may not assess aspects of HIV disease that typify the majority of the persons with HIV disease today. National norms for the U.S. adult population (and other nations) are available for the SF-36. In addition, the SF-36 has been used in a wide variety of patient populations, enabling comparisons of HIV-infected persons with persons with other health conditions. No national norms for the MOS-HIV are available. We conclude that there is currently insufficient evidence in the literature to recommend the use of the MOS-HIV over the SF-36 in HIV-infected persons. Although the SF-36 is not targeted at HIV, it may be preferable to use the SF-36 over the MOS-HIV due to fewer ceiling effects, availability of national norms, and the vast amount of data for other populations in the U.S. and around the world. Head-to-head comparisons demonstrating the unique value of the MOS-HIV over the SF-36 are clearly needed. More importantly, additional work needs to be directed at comparing the MOS-HIV and other putatively HIV-targeted instruments to one another to help demarcate aspects of HRQOL that are truly generic versus specific to HIV disease. Using both a generic and targeted HRQOL measure is a good general strategy, but this has not been a typical practice in studies of HIV because the MOS-HIV is so similar in content to the SF-36.


Human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) entered the public consciousness over two decades ago. In the ensuing years, interest in the measurement of self-reported functioning and well being, or health-related quality of life (HRQOL), in HIV-infected individuals has been extensive [14]. While the treatment for HIV-infection remains non-curative, the improvements in mortality and AIDS-free survival for HIV-infected individuals have been substantial [5, 6]. The modification of the natural history of the disease with multi-pharmaceutical regimens that have diverse beneficial as well as toxic effects [7] makes the measurement of HRQOL in this patient population more important than ever. However, there is no consensus regarding the best measurement approach.

When a particular disease is being considered, there is a tendency to assume that disease-targeted measures are superior to general or generic measures. HIV/AIDS is no exception. Numerous HIV/AIDS-targeted HRQOL measures have been developed. A recent review [8] evaluated the psychometric properties of HIV disease-targeted HRQOL instruments. Based on their review, the authors could not recommend the use of any of the instruments reviewed; however, the MOS-HIV was found to have the most available evidence for the evaluation criteria applied. Regardless of the lack of compelling arguments for its use, the MOS-HIV appears to be the most popular HRQOL instrument currently reported in the HIV literature. The purpose of this investigation is to examine the use of the MOS-HIV, a measure targeted at HIV disease, with the leading generic HRQOL instrument, the SF-36, in studies of persons with HIV.

The Medical Outcomes Study

The Medical Outcomes Study (MOS) was a four-year observational study that investigated the changes in physician practice styles and patient outcomes under different healthcare settings such as health maintenance organizations, large physician groups, or individual physician fee-for-service practices [9]. One of the goals of this longitudinal study was to construct reliable and valid tools for measuring and monitoring patient-reported functioning and well-being [10]. To complement the conventional clinical outcomes in the study, a spectrum of patient-reported outcome measures was created [11].

The MOS Short Form 20-Item Health Survey (SF-20), a brief, generic health status instrument that provides six scale scores (general health perceptions, physical function, role function, social function, pain, and mental health), was the first short form developed from the MOS and was used for the screening of patients for chronic disease status during the cross sectional phase of the study [11]. The SF-36, a second generation of the short form, includes an additional health concept (energy/fatigue), increases the precision of previous single-item measures (pain, social functioning) and multi-item measures (physical functioning) by adding additional items, measures the extent of physical limitations rather than the duration of the limitation, and focuses on a wider array of role limitations. The SF-36 was developed for the longitudinal phase of the MOS. At least nine short form instruments developed from the MOS scales have been used in studies of HIV-infected persons [11]. Among those instruments, the MOS-HIV has been reported to be the most widely used by researchers in patients with HIV infection [2, 12, 13].

Background to MOS-HIV and SF-36 Instruments

Owing to the perceived need for a succinct instrument to evaluate HRQOL in HIV-infected patients in multi-center AIDS clinical trials, the development of the MOS-HIV was begun in 1987 [14]. Sixteen items selected from the six scales of the SF-20 were the foundation for the construction of MOS-HIV. Four additional scales that were hypothesized to be related to the health status of HIV-infected persons (i.e., cognitive functioning [4 items], energy/fatigue [4 items], health distress [4 items] and quality of life [1 item]) as well as a single item assessing health transition were added to the original scales in the SF-20, resulting in a 30-item questionnaire [14]. The original MOS-HIV included only one general health perception item. Subsequently, the 4 other SF-20 current health items were added, leading to the 34-item MOS-HIV. With the addition of a second pain item, the current version of the MOS-HIV (distributed by the Medical Outcomes Trust) contains 35 items. It covers 11 dimensions of health including physical functioning, role functioning, pain, social functioning, emotional well-being, energy/fatigue, cognitive functioning, general health, health distress, overall QOL, and health transition. Mental (MHS) and physical health summary (PHS) scores can be calculated from the MOS-HIV scales [15]. The MOS-HIV scales range from 0 to 100, with higher scores representing better functioning and well-being. The MHS and PHS are scored using a method that transforms the scores to a standardized scale (T score) with a mean of 50 and a standard deviation of 10 in the sample in which the summary scores were developed [15]. Mean PHS and MHS scores above or below 50 can be interpreted as having better or worse HRQOL than the HIV-infected patient sample from which the summary measures were developed.

The SF-36 is one of the most widely used HRQOL instruments [16] and has demonstrated high levels of reliability and validity in diverse patient populations [17, 18]. It has 36 items that measure eight multi-item health concepts (i.e., physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role emotional, and mental health). This instrument was developed to address the health-related concepts that are most influenced by disease states and their related treatments [11]. The SF-36 can be scored to yield two orthogonal factor-based component summary scores for mental and physical health. The mental (MCS-36) and physical component summary (PCS-36) scores were derived from the eight scales of the SF-36 using principal components analysis of the total patient sample from the MOS and a sample of the general US population [19]. These physical and mental components account for 82% of the reliable variance in the SF-36's scales in the general US population. The SF-36 scales are scored on a 0 to 100 possible range, with higher scores representing better functioning and well-being. The MCS-36 and PCS-36 are scored using a method that transforms the scores to a standardized scale (T-scores) with a norm of 50 and a standard deviation of 10 in the general US population. Sample mean MCS-36 and PCS-36 scores above or below 50 can be interpreted as having better or worse HRQOL than the general US population. With norms established in subgroups based on gender and age and thirty medical conditions, including "healthy" with no chronic conditions, this standardized scoring provides a means of comparing results across patients with diverse medical conditions [20].

Examples of Studies of Persons with HIV using MOS-HIV or SF-36

A series of literature searches was performed to identify studies that measured health status in persons with HIV with the SF-36 or MOS-HIV. The literature in three databases, Medline, HealthStar, and PsychInfo, was searched from 1975 through 2002. The terms "quality of life," "HIV," and the name of the MOS instrument (i.e., SF-36 or MOS-HIV) were cross-referenced in each search of the databases. Only articles written in English were included.


Although other MOS-derived instruments have been used, studies incorporating either the MOS-HIV or SF-36 were found to be the most prevalent in studies of HIV disease. Thirty-nine citations for the MOS-HIV were found which presented empirical data [12, 15, 2157]. Fourteen empirical articles were found for the SF-36 [20, 5870]. At the time of this review, more than 40 cross-cultural translations were available for the SF-36 and 14 translations for the MOS-HIV [14, 71]. Only the SF-36 and the SF-12 (a subset of items from the SF-36 that reproduces > 90% of the variance of the SF-36's summary scores) [19] have norms available for their summary/composite measures that have been calculated from nationally representative samples.

Table 1 compares the numbers of items for each of the scales of the MOS-HIV and SF-36. The SF-36 has four additional items for the measurement of the physical functioning domain (10 vs. 6), five more items for the role functioning domains (7 vs. 2), and one more item for the social functioning domain (2 vs. 1) than the MOS-HIV. However, the MOS-HIV measures three domains (two with multi-item scales [cognitive functioning and health distress] and one with a single item [overall quality of life]) that are not measured by the SF-36.

Table 1 Number of items in the scales of the MOS-HIV and SF-36.

The two instruments take about five to ten minutes to be self-administered and can be interviewer administered in person or by telephone [48]. Reliability has been supported for the MOS-HIV [14, 15]and the SF-36 [20, 59, 72]. in this patient population. Support for item discrimination of the MOS-HIV has been shown in comparison with other HIV-targeted and generic HRQOL instruments [14]. One study found no differences in health distress and quality of life scale scores of the MOS-HIV in patients with early vs. late stages of HIV disease [12]. Differences have been found between HIV-infected and non-infected persons on all scales of the SF-36 [66] while only the summary scores of MOS-HIV distinguished between these two groups [22, 23]. The physical health summary scores from the SF-12 and the MOS-HIV both have been found to discriminate between HIV-infected patients with <200 vs. ≥ 200 CD4 t-cell counts [32, 73].

The summary scores of the SF-36 have been shown to be responsive to HIV disease progression [20, 74]. The MOS-HIV has been useful in illustrating changes in clinical status between treatment and control groups in intervention and observational studies; however, the role functioning, pain, mental health, health distress, and quality of life scales were shown to be non-responsive to treatment in one anti-retroviral intervention study [29]. Ceiling effects have been found for the physical functioning, role functioning and role emotional scales of the SF-36 [60] and MOS-HIV [37, 55]. Ceiling effects have been found in the cognitive functioning, pain, and health transition scales of the MOS-HIV in HIV-infected patients with more advanced HIV disease [35]. In addition, the role functioning scale of the MOS-HIV has been found to have floor effects in HIV-infected patients with more advanced HIV disease [21, 22, 35, 37].


One of the primary distinctions between the MOS-HIV and the SF-36 is the availability of nationally representative norms for the SF-36. Mental and physical health summary scores can be calculated for the MOS-HIV, but norms for these scores are available from only the subjects in the studies from which they were developed. The availability of nationally representative normative data permits the comparison of summary scores from one individual or a group of study subjects with scores from a sample representative of the general population. In addition, nationally representative norms for the MCS-36 and PCS-36 summary scores are available for males and females in seven age groups and for fourteen chronic conditions [75]. These norms permit healthcare decision makers to utilize the summary scores from the SF-36 to compare the health status of HIV-infected persons with other persons of similar gender and age, or with another chronic condition.

Perceived health of asymptomatic HIV-infected individuals does not appear to vary much from non-infected subjects. Wu and colleagues [76] demonstrated that HRQOL in HIV-infected patients with no symptoms or significant abnormalities was not different from that of healthy non-infected individuals. In a more recent study, Hays and colleagues found that the physical functioning of asymptomatic HIV-infected subjects was similar to that of the general US population [74]. In addition to increased measurement precision, using the SF-36 in patients in the early stages of HIV disease would allow a researcher to compare and contrast the health status of these HIV-infected individuals with the health status of patients with diverse chronic conditions in a range of cultures.

While the MOS-HIV has demonstrated evidence of reliability, construct validity and responsiveness among HIV-infected patient subjects, [12, 15, 42, 43, 77] there are limitations to the instrument. To allow for the addition of "disease-targeted" scales while not increasing respondent burden, the developers of the MOS-HIV sacrificed some measurement precision for the physical functioning, social functioning, and role functioning scales by reducing the number of items [21, 24, 35, 37]. These scales, in particular, appear to be important in assessing HRQOL in this patient population since the majority of the persons infected with HIV are young adults who are still functioning normally in society and may not perceive themselves as having functional impairment [13, 37]. For example, the full-length 10-item physical functioning scale of the SF-36 allows for the sampling of a wider range of severe and minor physical limitations and may provide for a better representation of the levels and types of physical limitations in this population [18]. The decreased measurement precision of the functioning scales in the MOS-HIV may explain why ceiling and floor effects have been found in a number of studies. Ceiling and floor effects become problematic when patients in longitudinal studies score the lowest or highest possible score at the baseline since subjects then can not report any lower or higher score that may occur if their health status deteriorates or improves at follow-up [78].

The MOS-HIV was developed over a decade ago when HIV disease and its treatment were very different from today [79]. At that time, rapid health deterioration from HIV disease and its associated sequelae was prevalent. With rapid progression into the late stages of HIV disease, monitoring the HRQOL of patients who were developing HIV-infection associated sequelae such as cancers (e.g., Kaposi's sarcoma), opportunistic infections (e.g., pneumocystis carinii pneumonia), and AIDS dementia was imperative. The disease-targeted scales (i.e., cognitive functioning, health distress, and quality of life) added to the 16 items from the SF-20 to develop the MOS-HIV were included in the instrument to measure domains hypothesized to be associated with the HIV disease-related health deterioration [12]. Currently, however, with the availability of HAART, HIV disease is, for the majority of patients, a chronic rather than acute condition [79] and, as such, may require an instrument to assess HRQOL that was designed for chronic rather than acute diseases. Indeed, empirical evidence supporting the construct validity of the disease-targeted scales of the MOS-HIV is limited [12].

The current chronic nature of the disease may preclude the necessity to monitor the HIV disease-targeted domains of the MOS-HIV in the general population of HIV-infected patients. Nevertheless, if monitoring of HIV disease-targeted health concepts is important, the MCS-36 summary score of the SF-36 is strongly correlated with the cognitive functioning (r = 0.70) and quality of life (r = 0.68) scales and negatively correlated with the health distress (r = -0.57) scale of the MOS-HIV [75]. This indicates that the MCS-36 represents these health concepts to some degree. Furthermore, in populations of patients in the late stages of HIV disease, augmenting the SF-36 with additional scales or instruments targeting the specific consequences of the disease and its treatment may be an effective approach. Two abstracts presented at the 1996 International Conference on AIDS found that the addition of HIV disease-targeted scales to the SF-36 did not detract from the measurement precision of the SF-36-specific scales or increase response burden appreciably and did provide for the effective monitoring of HIV disease [80, 81].

Our results were based on studies identified through several databases. There are other databases that may have contained studies that were not included in our evaluation. In addition, there were only 14 studies identified that utilized the SF-36 in HIV-infected persons. It is possible that additional studies are needed to more fully document the strengths and shortcomings of this instrument. In sum, this study revealed that although the MOS-HIV has been used widely in the monitoring of HIV-infected persons, it has noteworthy limitations that may constrain its applications in this population. Hence, there is insufficient evidence in the literature to support the use of the MOS-HIV rather than the SF-36 in HIV-infected persons. Although the SF-36 is not targeted at HIV, it may be preferable to use the SF-36 over the MOS-HIV due to fewer ceiling effects, availability of national norms, and the vast amount of data for other populations in the U.S. and around the world. Head-to-head comparisons demonstrating the unique value of the MOS-HIV over the SF-36 are clearly needed. In addition, more work needs to be directed at comparing the MOS-HIV and other putatively HIV-targeted instruments to one another to help demarcate aspects of HRQOL that are truly generic versus specific to HIV disease.


  1. 1.

    Hays RD, Shapiro MF: An overview of generic health-related quality of life measures for HIV research. Qual Life Res 1992,1(2):91–97.

  2. 2.

    de Boer JB, van Dam FS, Sprangers MA: Health-related quality-of-life evaluation in HIV-infected patients. A review of the literature. Pharmacoeconomics 1995,8(4):291–304.

  3. 3.

    Paltiel AD, Stinnett AA: AIDS. Quality of life and pharmacoeconomics in clinical trials (Edited by: Spilker B). Philadelphia: Lippincott-Raven Publishers 1996, 1053–1062.

  4. 4.

    Berzon RA, Lenderking WR: Evaluating the outcomes of HIV disease: focus on health status measurement. Medical Outcomes Trust Monitor 1998, 3: 1–8.

  5. 5.

    Torres RA, Barr M: Impact of combination therapy for HIV infection on inpatient census. N Engl J Med 1997,336(21):1531–1532.

  6. 6.

    Hirschel B, Francioli P: Progress and problems in the fight against AIDS. N Engl J Med 1998,338(13):906–908.

  7. 7.

    Bozzette SA, Hays RD, Berry SH, Kanouse DE: A Perceived Health Index for use in persons with advanced HIV disease: derivation, reliability, and validity. Med Care 1994,32(7):716–731.

  8. 8.

    Davis EA, Pathak DS: Psychometric evaluation of four HIV disease-specific quality-of-life instruments. Ann Pharmacother 2001,35(5):546–552.

  9. 9.

    Stewart AL, Hays RD, Ware JE Jr: The MOS short-form general health survey. Reliability and validity in a patient population. Med Care 1988,26(7):724–735.

  10. 10.

    Tarlov AR, Ware JE Jr, Greenfield S, Nelson EC, Perrin E, Zubkoff M: The Medical Outcomes Study. An application of methods for monitoring the results of medical care. JAMA 1989,262(7):925–930.

  11. 11.

    Wu AW, Hays RD, Kelly S, Malitz F, Bozzette SA: Applications of the Medical Outcomes Study health-related quality of life measures in HIV/AIDS. Qual Life Res 1997,6(6):531–554.

  12. 12.

    Wu AW, Rubin HR, Mathews WC, Ware JE Jr, Brysk LT, Hardy WD, et al.: A health status questionnaire using 30 items from the Medical Outcomes Study. Preliminary validation in persons with early HIV infection. Med Care 1991,29(8):786–798.

  13. 13.

    Wachtel T, Piette J, Mor V, Stein M, Fleishman J, Carpenter C: Quality of life in persons with human immunodeficiency virus infection: measurement by the Medical Outcomes Study instrument. Ann Intern Med 1992,116(2):129–137.

  14. 14.

    Wu AW, Revicki DA, Jacobson D, Malitz FE: Evidence for reliability, validity and usefulness of the Medical Outcomes Study HIV Health Survey (MOS-HIV). Qual Life Res 1997,6(6):481–493.

  15. 15.

    Revicki DA, Sorensen S, Wu AW: Reliability and validity of physical and mental health summary scores from the Medical Outcomes Study HIV Health Survey. Med Care 1998,36(2):126–137.

  16. 16.

    Ware JE Jr: SF-36 health survey update. Spine 2000,25(24):3130–3139.

  17. 17.

    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):473–483.

  18. 18.

    Ware JE, Snow KK, Kosinski M, Gandek B: SF-36 health survey: Manual and interpretation guide. Boston (MA): The Health Institute, New England Medical Center 1993.

  19. 19.

    Ware J 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):220–233.

  20. 20.

    Bing EG, Hays RD, Jacobson LP, Chen B, Gange SJ, Kass , et al.: Health-related quality of life among people with HIV disease: results from the Multicenter AIDS Cohort Study. Qual Life Res 2000,9(1):55–63.

  21. 21.

    Copfer AE, Ampel NM, Hughes TE, Gregor KJ, Dols CL, Coons SJ, et al.: The use of two measures of health-related quality of life in HIV-infected individuals: a cross-sectional comparison. Qual Life Res 1996,5(2):281–286.

  22. 22.

    Badia X, Podzamczer D, Garcia M, Lopez-Lavid CC, Consiglio E: A randomized study comparing instruments for measuring health-related quality of life in HIV-infected patients. Spanish MOS-HIV and MQOL-HIV Validation Group. Medical Outcomes Study HIV Health Survey. AIDS 1999,13(13):1727–1735.

  23. 23.

    Badia X, Podzamczer D, Lopez-Lavid C, Garcia M: Evidence-based medicine and the validation of quality-of-life questionnaires: the Spanish version of the MOS-HIV questionnaire for the evaluation of the quality of life in patients infected by HIV. Enferm Infecc Microbiol Clin 1999,17(Suppl 2):103–13.

  24. 24.

    Badia X, Podzamczer D, Casado A, Lopez-Lavid C, Garcia M: Evaluating changes in health status in HIV-infected patients: Medical Outcomes Study-HIV and Multidimensional Quality of Life-HIV quality of life questionnaires. Spanish MOS-HIV and MQOL-HIV Validation Group. AIDS 2000,14(10):1439–1447.

  25. 25.

    Bayoumi AM, Redelmeier DA: Economic methods for measuring the quality of life associated with HIV infection. Qual Life Res 1999,8(6):471–480.

  26. 26.

    Burgess AP, Dayer M, Catalan J, Hawkins D: The reliability and validity of two HIV-specific health-related quality-of-life measures: A preliminary analysis. AIDS 1993,7(7):1008.

  27. 27.

    Carretero MD, Burgess AP, Soler P, Soler M, Catalan J: Reliability and validity of an HIV-specific health-related quality-of-life measure for use with injecting drug users. AIDS 1996,10(14):1699–1705.

  28. 28.

    Chan KS, Revicki DA: Changes in surrogate laboratory markers, clinical endpoints, and health-related quality of life in patients infected with the human immunodeficiency virus. Eval Health Prof 1998,21(2):265–281.

  29. 29.

    Chatterton ML, Scott-Lennox J, Wu AW, Scott J: Quality of life and treatment satisfaction after the addition of lamivudine or lamivudine plus loviride to zidovudine-containing regimens in treatment-experienced patients with HIV infection. Pharmacoeconomics 1999,15(Suppl 1):67–74.

  30. 30.

    Cohen C, Revicki DA, Nabulsi A, Sarocco PW, Jiang P: A randomized trial of the effect of ritonavir in maintaining quality of life in advanced HIV disease. Advanced HIV Disease Ritonavir Study Group. AIDS 1998,12(12):1495–1502.

  31. 31.

    Cunningham WE, Bozzette SA, Hays RD, Kanouse DE, Shapiro MF: Comparison of health-related quality of life in clinical trial and nonclinical trial human immunodeficiency virus-infected cohorts. Med Care 1995,33(4 Suppl):AS15-AS25.

  32. 32.

    Delate T, Coons SJ: The discriminative ability of the 12-item short form health survey (SF-12) in a sample of persons infected with HIV. Clin Ther 2000,22(9):1112–1120.

  33. 33.

    Gold J, High HA, Li Y, Michelmore H, Bodsworth NJ, Finlayson R, et al.: Safety and efficacy of nandrolone decanoate for treatment of wasting in patients with HIV infection. AIDS 1996,10(7):745–752.

  34. 34.

    Heald AE, Pieper CF, Schiffman SS: Taste and smell complaints in HIV-infected patients. AIDS 1998,12(13):1667–1674.

  35. 35.

    Holmes WC, Shea JA: Two approaches to measuring quality of life in the HIV/AIDS population: HAT-QoL and MOS-HIV. Qual Life Res 1999,8(6):515–527.

  36. 36.

    Hughes TE, Kaplan RM, Coons SJ, Draugalis JR, Johnson JA, Patterson TL: Construct validities of the Quality of Well-Being Scale and the MOS-HIV-34 Health Survey for HIV-infected patients. Med Decis Making 1997,17(4):439–446.

  37. 37.

    Murri R, Ammassari A, Fantoni M, Scoppettuolo G, Cingolani A, De Luca A, et al.: Disease-related factors associated with health-related quality of life in people with nonadvanced HIV disease assessed using an Italian version of the MOS-HIV Health Survey. J Acquir Immune Defic Syndr Hum Retrovirol 1997,16(5):350–356.

  38. 38.

    Murri R, Fantoni M, Del Borgo C, Izzi I, Visona R, Suter F, et al.: Intravenous drug use, relationship with providers, and stage of HIV disease influence the prescription rates of protease inhibitors. J Acquir Immune Defic Syndr 1999,22(5):461–466.

  39. 39.

    Nieuwkerk PT, Gisolf EH, Colebunders R, Wu AW, Danner SA, Sprangers MA: Quality of life in asymptomatic- and symptomatic HIV infected patients in a trial of ritonavir/saquinavir therapy. The Prometheus Study Group. AIDS 2000,14(2):181–187.

  40. 40.

    O'Leary JF, Ganz PA, Wu AW, Coscarelli A, Petersen L: Toward a better understanding of health-related quality of life: a comparison of the Medical Outcomes Study HIV Health Survey (MOS-HIV) and the HIV Overview of Problems-Evaluation System (HOPES). J Acquir Immune Defic Syndr Hum Retrovirol 1998,17(5):433–441.

  41. 41.

    Raboud JM, Singer J, Thorne A, Schechter MT, Shafran SD: Estimating the effect of treatment on quality of life in the presence of missing data due to drop-out and death. Qual Life Res 1998,7(6):487–494.

  42. 42.

    Revicki DA, Wu AW, Murray MI: Change in clinical status, health status, and health utility outcomes in HIV-infected patients. Med Care 1995,33(4 Suppl):AS173-AS182.

  43. 43.

    Revicki DA, Swartz C, Wu AW, Haubrich R, Collier AC: Quality of life outcomes of saquinavir, zalcitabine and combination saquinavir plus zalcitabine therapy for adults with advanced HIV infection with CD4 counts between 50 and 300 cells/mm3 . Antivir Ther 1999,4(1):35–44.

  44. 44.

    Revicki DA, Moyle G, Stellbrink HJ, Barker C: Quality of life outcomes of combination zalcitabine-zidovudine, saquinavir-zidovudine, and saquinavir-zalcitabine-zidovudine therapy for HIV-infected adults with CD4 cell counts between 50 and 350 per cubic millimeter. PISCES (SV14604) Study Group. AIDS 1999,13(7):851–858.

  45. 45.

    Schag CA, Ganz PA, Kahn B, Petersen L: 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(6):397–413.

  46. 46.

    Scott-Lennox JA, Mills RJ, Burt MS: Impact of zidovudine plus lamivudine or zalcitabine on health-related quality of life. Ann Pharmacother 1998,32(5):525–530.

  47. 47.

    Weinfurt KP, Willke RJ, Glick HA, Freimuth WW, Schulman KA: Relationship between CD4 count, viral burden, and quality of life over time in HIV-1-infected patients. Med Care 2000,38(4):404–410.

  48. 48.

    Wu AW, Jacobson DL, Berzon RA, Revicki DA, van der HC, Fichtenbaum CJ, et al.: The effect of mode of administration on Medical Outcomes Study health ratings and EuroQol scores in AIDS. Qual Life Res 1997,6(1):3–10.

  49. 49.

    Wu AW: Quality of life assessment comes of age in the era of highly active antiretroviral therapy. AIDS 2000,14(10):1451.

  50. 50.

    Marinacci C, Schifano P, Borgia P, Perucci CA: Application of random effect ordinal regression model for outcome evaluation of two randomized controlled trials. Stat Med 2001,20(24):3769–3776.

  51. 51.

    Knippels HM, Goodkin K, Weiss JJ, Wilkie FL, Antoni MH: The importance of cognitive self-report in early HIV-1 infection: validation of a cognitive functional status subscale. AIDS 2002,16(2):259–267. [erratum appears in AIDS 2002 Mar 8;16(4):681].

  52. 52.

    Miners AH, Sabin CA, Mocroft A, Youle M, Fisher M, Johnson M: Health-related quality of life in individuals infected with HIV in the era of HAART. HIV Clin Trials 2001,2(6):484–492.

  53. 53.

    Casado A, Consiglio E, Podzamczer D, Badia X: Highly active antiretroviral treatment (HAART) and health-related quality of life in naive and pretreated HIV-infected patients. HIV Clin Trials 2001,2(6):477–483.

  54. 54.

    Turner J, Page-Shafer K, Chin DP, Osmond D, Mossar M, Markstein L, et al.: Adverse impact of cigarette smoking on dimensions of health-related quality of life in persons with HIV infection. AIDS Patient Care and STDs 2001,15(12):615–624.

  55. 55.

    Piketty C, Jayle D, Leplege A, Castiel P, Ecosse E, Gonzalez-Canali G, et al.: Double-blind placebo-controlled trial of oral dehydroepiandrosterone in patients with advanced HIV disease. Clin Endocrinol 2001,55(3):325–330.

  56. 56.

    Blanch J, Martinez E, Rousaud A, Blanco JL, Garcia-Viejo MA, Peri JM, et al.: Preliminary data of a prospective study on neuropsychiatric side effects after initiation of efavirenz. J Acquir Immune Defic Syndr 2001,27(4):336–343.

  57. 57.

    Scott-Lennox JA, Wu AW, Boyer JG, Ware JE Jr: Reliability and validity of French, German, Italian, Dutch, and UK English translations of the Medical Outcomes Study HIV Health Survey. Med Care 1999,37(9):908–925.

  58. 58.

    Call SA, Klapow JC, Stewart KE, Westfall AO, Mallinger AP, DeMasi RA, et al.: Health-related quality of life and virologic outcomes in an HIV clinic. Qual Life Res 2000,9(9):977–985.

  59. 59.

    Anderson JP, Kaplan RM, Coons SJ, Schneiderman LJ: Comparison of the Quality of Well-being Scale and the SF-36 results among two samples of ill adults: AIDS and other illnesses. J Clin Epidemiol 1998,51(9):755–762.

  60. 60.

    Arpinelli F, Visona G, Bruno R, De Carli G, Apolone G: Health-related quality of life in asymptomatic patients with HIV. Evaluation of the SF-36 health survey in Italian patients. Pharmacoeconomics 2000,18(1):63–72.

  61. 61.

    Bakken S, Holzemer WL, Brown MA, Powell-Cope GM, Turner JG, Inouye J, et al.: Relationships between perception of engagement with health care provider and demographic characteristics, health status, and adherence to therapeutic regimen in persons with HIV/AIDS. AIDS Patient Care and STDS 2000,14(4):189–197.

  62. 62.

    Bastardo YM, Kimberlin CL: Relationship between quality of life, social support and disease-related factors in HIV-infected persons in Venezuela. AIDS Care 2000,12(5):673–684.

  63. 63.

    Bult JR, Hunink MG, Tsevat J, Weinstein MC: Heterogeneity in the relationship between the time tradeoff and Short Form-36 for HIV-infected and primary care patients. Med Care 1998,36(4):523–532.

  64. 64.

    Miners AH, Sabin CA, Tolley KH, Jenkinson C, Ebrahim S, Lee CA: Assessing health-related quality-of-life in patients with severe haemophilia A and B. Psychology, Health & Medicine 1999,4(1):15.

  65. 65.

    Miners AH, Sabin CA, Tolley KH, Jenkinson C, Kind P, Lee CA: Assessing health-related quality-of-life in individuals with haemophilia. Haemophilia 1999,5(6):378–385.

  66. 66.

    O'Keefe EA, Wood R: The impact of human immunodeficiency virus (HIV) infection on quality of life in a multiracial South African population. Qual Life Res 1996,5(2):275–280.

  67. 67.

    Swindells S, Mohr J, Justis JC, Berman S, Squier C, Wagener MM, et al.: Quality of life in patients with human immunodeficiency virus infection: impact of social support, coping style and hopelessness. Int J STD AIDS 1999,10(6):383–391.

  68. 68.

    Tsevat J, Solzan JG, Kuntz KM, Ragland J, Currier JS, Sell RL, et al.: Health values of patients infected with human immunodeficiency virus. Relationship to mental health and physical functioning. Med Care 1996,34(1):44–57.

  69. 69.

    Burgoyne RW, Saunders DS: Quality of life among urban Canadian HIV/AIDS clinic outpatients. Int J of STD AIDS 2001,12(8):505–512.

  70. 70.

    te Vaarwerk MJ, Gaal EA: Psychological distress and quality of life in drug-using and non-drug-using HIV-infected women. Eur J Public Health 2001,11(1):109–115.

  71. 71.

    IQOLA Project SF-36 and SF-12 Translations []

  72. 72.

    Lamping DL: Measuring quality of life in HIV infection: validation of the SF-36 short-form health survey. Int Conf AIDS 1993,9(2):780.

  73. 73.

    Delate T, Coons SJ: The use of 2 health-related quality-of-life measures in a sample of persons infected with human immunodeficiency virus. Clin Infect Dis 2001,32(3):e47-e52.

  74. 74.

    Hays RD, Cunningham WE, Sherbourne CD, Wilson IB, Wu AW, Cleary PD, et al.: Health-related quality of life in patients with human immunodeficiency virus infection in the United States: results from the HIV Cost and Services Utilization Study. Am J Med 2000,108(9):714–722.

  75. 75.

    Ware JE, Kosinski M, Keller SD: SF-36 Physical and Mental Health Summary Scales: A User's Manual. Boston (MA): The Health Institute, New England Medical Center 1994.

  76. 76.

    Wu AW, Rubin HR, Bozzette SA, Mathews WC, Snyder R, Wright B, et al.: A longitudinal study of quality of life in asymptomatic HIV infection. Int Conf AIDS 1991,7(1):348.

  77. 77.

    Singer J, Thorne A, Khorasheh S, Raboud JM, Wu AW, Salit I, et al.: Symptomatic and health status outcomes in the Canadian randomized MAC treatment trial (CTN010). Canadian HIV Trials Network Protocol 010 Study Group. Int J STD AIDS 2000,11(4):212–219.

  78. 78.

    Bindman AB, Keane D, Lurie N: Measuring health changes among severely ill patients. The floor phenomenon. Med Care 1990,28(12):1142–1152.

  79. 79.

    Panel on Clinical Practices for Treatment of HIV Infection, et al.: Guidelines for the use of antiretroviral agents in HIV-infected adults and adolescents. []

  80. 80.

    Gallant S, Ricciardi P, Sudre P, Kruseman M, von Overbeck J, Burnand B, et al.: Health status: use of the French MOS-SF-40 in HIV + patients. Int Conf AIDS 1996,11(1):323.

  81. 81.

    Gerbaud L, Laurichesse H, Biolay S, Gourdon F, Marcombes V, Glanddier PY, et al.: Health related quality of life among HIV patients – preliminary results of a prospective study. Int Conf AIDS 1996,11(2):116.

Download references


Ron D. Hays, Ph.D., was supported in part by the UCLA/DREW Project EXPORT, National Institutes of Health, National Center on Minority Health & Health Disparities, (P20-MD00148-01) and the UCLA Center for Health Improvement in Minority Elders / Resource Centers for Minority Aging Research, National Institutes of Health, National Institute of Aging, (AG-02-004).

Author information

Correspondence to Stephen Joel Coons.

Additional information

Authors' contributions

JS reviewed the literature and drafted the manuscript. TD helped with the literature review and drafting of the manuscript. RDH provided feedback about the initial idea and editorial input to the drafts of the manuscript. SJC oversaw the effort and was involved in drafting and revising the manuscript from start to finish.

Rights and permissions

Reprints and Permissions

About this article


  • Human Immunodeficiency Virus
  • Summary Score
  • Acquire Immune Deficiency Syndrome
  • Medical Outcome Study
  • Human Immunodeficiency Virus Disease