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Health Related Quality of Life-HIV (HRQOL-HIV)
Please note that this section is an archive (last updated in June 2006). [disclaimer]
Sections:
Overview |
Instrument Reviews |
Construct Overviews |
Book Compendium Reviews |
Internet Site Reviews
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Practical Information
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Instrument Name:
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Health Related Quality of Life-HIV (HRQOL-HIV)
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Instrument Description:
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The scale measures physical and mental health (quality of life) of persons with HIV. All were items extracted from the data pool of the Medical Outcomes Study (MOS), therefore, exact instrument name and items may vary by research purpose and design. There may be 12 to 56 items, covering 2 to 11 domains, depending on measure. (Ref: 6) An example of the breakdown of dimensions is: 1) overall quality of life, 2) current health, 3) energy/fatigue, 4) freedom from pain, 5) physical function, 6) role function, 7) emotional well-being, 8) cognitive function, 9) absence of loneliness, 10) hopefulness, 11) social function. (Ref: 1) For more information about the MOS and to obtain the original survey items, see: http://www.rand.org/health/surveys/core/
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Price:
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Unknown; original items from RAND
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Administration Time:
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2-14 minutes, depending on measure
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Publication Year:
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Varies
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Item Readability:
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Items are drawn from the MOS pool and vary by instrument. As an example of readability, HIV-PARSE items feature common vocabulary that most could comprehend. Most words that are technical (e.g. "endoscopy") are explained.
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Scale Format:
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Likert (point scale depends on measure)
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Administration Technique:
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Self-administered or interview
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Scoring and Interpretation:
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Scoring varies. Total scores consist of simple summation, transformed linearly to a 0-100 range; physical and mental health domains may be subscored separately depending on scale. (Ref: 1, 2) One may also obtain a scale domain’s score by averaging the items from each domain, and transforming to a 0-100 linear range. (Ref: 3) Higher score indicates better health.
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Forms:
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There are various HIV measures adapted from the Medical Outcomes Study (MOS) pool of items: SF-20, MOS-HIV, SF-36, SF-12, SF-56, SF-38, PARSE, and HIV Cost and Service Utilization Study (HCSUS) questionnaires, MQOL-HIV, HRQOL-HIV, various language translations. (Ref: 6)
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Research Contacts
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Instrument Developers:
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Varies; see individual references.
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Instrument Development Location:
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Varies; see individual references.
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Instrument Developer Email:
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Instrument Developer Website:
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Annotated Bibliography
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1. Cunningham WE, Hays RD, Williams KW, Beck KC, Dixon WJ, Shapiro MF. Access to medical care and health-related quality of life for low-income persons with symptomatic human immunodeficiency virus. Med Care. 1995 Jul;33(7):739-54. [PMID: 7596212]
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Purpose: The authors' aim was to examine access to care and its relations with health-related quality of life (HRQOL) among persons with HIV and low income. |
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Sample: 205 patients at one public and one VA hospital were included in the study. |
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Methods: A 9-item measure of perceived access and a 55-item HRQOL measure, with 11 domains and a 5-point Likert scale (adapted from the Medical Outcomes Study) were given. |
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Implications: Problems with access were abundant. HRQOL scores were lower than patients in a large clinical trial. |
2. 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 Apr;33(4 Suppl):AS15-25. [PMID: 7723442]
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Purpose: The study compared health-related quality of life (HRQOL) in two groups infected with HIV. |
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Sample: There were two groups in the study: Group 1 was comprised of 1,907 subjects who were primarily white, privately insured and had a high income; Group 2 were comprised of 205 subjects of various ethnicities, recruited from one public and one VA hospital,.who had low income. |
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Methods: Subjects were given a HRQOL measure (30 items from the Medical Outcomes Study), and measures on symptoms, medications and demographics. |
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Implications: HRQOL scores were lower in the low income, ethnically diverse group. |
3. 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. Quality of Life Research 1997 Aug;6(6):531-54. [PMID: 9330553]
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Purpose: This article was a review of the history of the MOS instruments in HIV/AIDS, focusing on comparing and contrasting the measures. |
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Methods: An appendix is provided which compares items on each instrument, published studies are reviewed, and there is a brief discussion at the end. |
4. Cunningham WE, Shapiro MF, Hays RD, Dixon WJ, Visscher BR, George WL, Ettl MK, Beck CK. Constitutional symptoms and health-related quality of life in patients with symptomatic HIV disease. Am J Med. 1998 Feb;104(2):129-36. [PMID: 9528730]
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Purpose: The severity of constitutional symptoms in people with HIV infection and their relationship to HRQOL was determined. |
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Sample: The study population was comprised of 205 HIV patients at a county hospital and a VA hospital. They were mostly non-white and were of low income. |
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Methods: The researchers administered a battery including 11 scales to measure HRQOL and constitutional symptoms or symptom complexes. The HRQOL measure included 55 items. |
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Implications: All except one constitutional symptom (weight loss) studied was related to all measures of HRQOL. |
5. Globe DR, Hays RD, Cunningham WE. Associations of clinical parameters with health-related quality of life in hospitalized persons with HIV disease. AIDS Care. 1999 Feb;11(1):71-86. [PMID: 10434984]
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Purpose: The authors assessed the relationship of clinical parameters with HRQOL in HIV hospitalized patients. |
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Sample: 217 hospitalized HIV patients, including patients from 2 VA hospitals participated in the study. |
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Methods: Medical records were reviewed and face-to-face interviews were administered using a 42-item HRQOL scale (adapted from the HIV-PARSE, a 56-item scale used in the HIV Outcomes Study (HOS), and the 30-item MOS-HIV). |
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Implications: HRQOL scores were significantly lower in this group when compared to an ambulatory clinical trial group. Those reporting more days spent in bed had lower HRQOL, and those with greater severity of illness had lower HRQOL. |
6. 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 Jul 7;14(10):1439-47. [PMID: 10930160]
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Purpose: The authors aim was to compare the sensitivity to change of the two measures—MOS-HIV and MQOL-HIV for use in clinical research. |
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Sample: 296 HIV patients starting or switching treatments at 23 Spanish hospitals participated in the study. |
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Methods: Subjects were randomly assigned one of the two questionnaires at baseline and 3 month follow-up. |
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Implications: Both questionnaires showed sensitivity to change, but the MOS-HIV was more sensitive. |
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Factors and Norms
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Factor Analysis Work:
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For example: 1) overall quality of life, 2) current health, 3) energy/fatigue, 4)freedom from pain, 5) physical function, 6) role function, 7) emotional well being, 8) cognitive function, 9) absence of loneliness, 10) hopefulness, 11) social function (Ref: 1).
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Normative Information Availability:
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Yes (Ref: 2).
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Reliability Evidence
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Test-retest:
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No information found.
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Inter-rater:
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No information found.
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Internal Consistency:
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For example, reliability is as follows for a 55 item HRQOL-HIV measure: alpha>=0.80 for 8 domains, 0.70 for two domains, 0.62 for one domain. (Ref: 1) Reliability for a 30-item measure was alpha=0.79 to 0.90. (Ref: 2) In one review paper, reliability for many of the scales is reported as follows (Ref: 6):
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Alpha
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| MOS-HIV
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>0.75
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| SF-20
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0.73-0.89
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| SF-21
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0.79-0.84
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| SF-36
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>0.70-0.88
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| SF-38
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0.80-0.90
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| SF-56
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>0.70-0.86
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Alternate Forms:
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No information found.
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Validity Evidence
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Construct/ Convergent/ Discriminant:
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Subjects with HIV in a low income, ethnically diverse group report significantly more symptoms (mean=11 symptoms) on HRQOL than a mostly white, higher income group (mean=7 symptoms, p<0.001). (Ref: 2) Scores were lower by 1 standard deviation in a group of low-income persons with HIV than of those in a large national clinical trial. (Ref: 2) Number of disability days due to illness was greater for a hospitalized sample than a nonclinical sample (p<0.001), and scores were lower on HRQOL in this group (p<0.05). (Ref: 3) Physical functioning scores are negatively correlated with increasing age (r=-0.05, p<0.05). (Ref: 3) Emotional well-being was negatively correlated with polysubstance abuse (r=-0.19, p<0.01). (Ref: 3)
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Criterion-related/ Concurrent/ Predictive:
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The Clinical AIDS Prognostic System (CAPS) severity index, which is based on laboratory and clinical findings from medical records, was correlated negatively with the emotional well-being domain on the HRQOL measure (r=-0.14, p<0.05). (Ref: 3) The overall HRQOL scale was also negatively correlated with the CAPS severity index (r=-0.19, p<0.01), the number of AIDS-related diagnoses at admission (r=-0.18, p<0.01), and the number of AIDS-related symptoms at admission (r=-0.14, p<0.05). (Ref: 3) HRQOL scores are lower for those with more constitutional symptoms than those without. (Ref: 4)
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Content:
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No information found.
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Responsiveness Evidence:
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Based on self-report and clinical measures of health, patients who improved (clinically significant pre-post score changes) had mean percentage of dimensions of 86.4% on MOS-HIV and 50% on MQOL-HIV. Mean standardized effect size was 0.33 on MQOL-HIV and 0.45 on MOS-HIV for all dimensions. (Ref: 5)
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Scale Application in VA Populations:
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Yes. (Ref: 1-4)
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Scale Application in non-VA Populations:
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Yes. (Ref: 1-4)
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Comments
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The literature provides an overview of 10 available HRQoL measures for HIV-infected patients. Of these, the MOS-HIV and PARSE (and its derivatives) were most commonly used in research. References are also made to the SF-36, although this scale is regarded as uninformative for the dimension of cognitive function/distress, which is not included but has heavy influence in HIV-infected patients.
Overall Usefulness for a Certain Population: Studies incorporated white, black, and Hispanic racial/ethnic cohorts, but other racial/ethnic groups were underrepresented. Even more underrepresented were women. Therefore, the psychometric properties of these scales for women, Asian and American Indian/Pacific Islander patients are not evidenced.
Advantages: These scales, particularly the ones used in studies, are readily available and adequate comparison data from other studies is available from the literature. The MOS-HIV and PARSE received little criticism for excessive length, and the interpretability of the items was adequate.
Disadvantages: Items in the MOS-HIV and the SF measures contain anachronistic clichés (“full of pep,” “downhearted and blue”) that may distract or even confuse younger respondents. Several studies report ceiling effects, particularly on the Social Functioning and Pain subscales; cursory examination of items suggests untenable response benchmarks as a culprit (e.g., “unable to work” is unrealistic for most respondents, “very severe” likely describes much of the pain being self-reported).
Recommendation: Research using the HIV PARSE reports the most conclusive positive evidence of scale performance. While there was some evidence of respondent burden, this was minimized by the additional richness of information made available. To widen the potential audience, a shorter, 21-item form of the PARSE is also available (no psychometric information available at present).
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