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5.5 – What is the difference between generic and HIV-specific outcome measures?

Table 5.5: Advantages and Disadvantages of Generic versus Disease-specific Measures

Type of Outcome Measure Advantages and Disadvantages
  • Generic Measures These measures can be used with all individuals in the general population.

If a generic measure is used with people living with HIV, their scores can be compared with people living with other types of illness who completed that same measure, or even to the general 'healthy' population.

Examples of generic measures commonly used in HIV practice and research include:

  • Medical Outcomes Study Short Form (SF-36) questionnaire, which measures health-related quality of life (HRQL)19,20
  • Assessment of Motor and Process Skills (AMPS), which is used to measure safety, independence, efficiency and effort when performing daily life tasks within and around the home23,24
  • Centre for Epidemiological Studies for Depression Scale (CES-D), which measures depression25

One drawback with generic measures is that there may be unique aspects related to HIV that are not captured in a generic type of measure (e.g. lipodystrophy, HIV stigma and discrimination, and fear of disclosure).

  • Disease-Specific Measures These can measure a health-related concept within a specific disease group (e.g., people living with HIV).

To capture disease-specific issues, researchers developed disease or HIV-specific measures to measure the extent of certain health constructs of interest for people living with HIV.

Examples of HIV-specific measures are:

  • HIV Symptom Index, a 21-item self-reported questionnaire that measures symptom presence and severity18
  • Medical Outcomes Study-HIV Health Survey which was adapted from the Short Form 36 (SF-36) to measure HRQL specifically for people living with HIV26,27,28

19Ware JE Jr. SF-36 health survey update. Spine (Phila Pa 1976). 2000 Dec 15;25(24):3130-9. Review. PubMed PMID: 11124729. http://www.ncbi.nlm.nih.gov/pubmed/11124729.

20Ware JE Jr, Gandek B. Overview of the SF-36 Health Survey and the International Quality of Life Assessment (IQOLA) Project. J Clin Epidemiol. 1998  Nov;51(11):903-12. PubMed PMID: 9817107. http://www.ncbi.nlm.nih.gov/pubmed/9817107.

21Beaton DE, Boers M, Wells GA. Many faces of the minimal clinically important difference (MCID): a literature review and directions for future research. Curr Opin Rheumatol. 2002 Mar;14(2):109-14. Review. PubMed PMID: 11845014. http://www.ncbi.nlm.nih.gov/pubmed/11845014.

22Holland AE, Hill CJ, Rasekaba T, Lee A, Naughton MT, McDonald CF. Updating the minimal important difference for six-minute walk distance in patients with chronic obstructive pulmonary disease. Arch Phys Med Rehabil. 2010 Feb;91(2):221-5. doi: 10.1016/j.apmr.2009.10.017. PubMed PMID: 20159125. http://www.ncbi.nlm.nih.gov/pubmed/20159125.

23Fisher A.G., Bray Jones K: Assessment of Motor and Process Skills. Vol. 1: Development, Standardization, and Administration Manual (7th ed.) Fort Collins, CO: Three Star Press; 2010a.

24Fisher A.G., Bray Jones K. Assessment of Motor and Process Skills. Vol. 2: User Manual (7th ed.) Fort Collins, CO: Three Star Press; 2010b.

25Radloff LS. The CES-D scale: a self-report depression scale for research in the general population. Appl. Psychol. Measure. 1977;1(3):385-401. http://apm.sagepub.com/content/1/3/385.full.pdf+html.

26Wu 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. 1997a Aug;6(6):531-54. Review. PubMed PMID: 9330553. http://www.ncbi.nlm.nih.gov/pubmed/9330553.

27Wu 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. 1997b Aug;6(6):481-93. Review. PubMed PMID: 9330549. http://www.ncbi.nlm.nih.gov/pubmed/9330549.

28Wu AW, Rubin HR, Mathews WC, Ware JE Jr, Brysk LT, Hardy WD, Bozzette SA, Spector SA, Richman DD. A health status questionnaire using 30 items from the Medical Outcomes Study. Preliminary validation in persons with early HIV infection. Med Care. 1991 Aug;29(8):786-98. PubMed PMID: 1875745. http://www.ncbi.nlm.nih.gov/pubmed/1875745.