How do existing HIV-specific instruments measure up? Evaluating the ability of instruments to describe disability experienced by adults living with HIV

Health and Quality of Life Outcomes

Volumn 8, Issue , 2010, Pages

  O'Brien, Kelly K ^a,b,c   Bayoumi, Ahmed M ^a,b,d   Strike, Carol ^a,e   Young, Nancy L ^a,f   King, Kenneth ^g   Davis, Aileen M ^a,h  

^a UNIVERSITY OF TORONTO   (Canada)

^b ST MICHAEL'S HOSPITAL   (Canada)

^c MCMASTER UNIVERSITY   (Canada)

^d UNIVERSITY OF TORONTO   (Canada)

^e CENTRE FOR ADDICTION AND MENTAL HEALTH   (Canada)

^f LAURENTIAN UNIVERSITY   (Canada)

^g Canadian Working Group on HIV and Rehabilitation   (Canada)

^h UNIVERSITY HEALTH NETWORK   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CONTENT ANALYSIS; DAILY LIFE ACTIVITY; DATA ANALYSIS; DATA BASE; DISABILITY; HEALTH STATUS; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; INSTRUMENT VALIDATION; MEASUREMENT; QUESTIONNAIRE; RELIABILITY; SELF REPORT; SYMPTOMATOLOGY; ADULT; DISABLED PERSON; EVALUATION; FEMALE; MALE;

ADULT; DISABILITY EVALUATION; DISABLED PERSONS; FEMALE; HIV INFECTIONS; HUMANS; MALE; QUESTIONNAIRES;

EID: 77955701146     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-8-88     Document Type: Article

References (67)

1. O'Dell MW, Hubert HB, Lubeck DP, O'Driscoll P. Pre-AIDS physical disability: data from the AIDS Time-Oriented Health Outcome Study. Arch Phys Med Rehabil 1998, 79(10):1200-1205. 10.1016/S0003-9993(98)90262-3, 9779671.
2. Rusch M, Nixon S, Schilder A, Braitstein P, Chan K, Hogg RS. Impairments, activity limitations and participation restrictions: prevalence and associations among persons living with HIV/AIDS in British Columbia. Health Qual Life Outcomes 2004, 2:46. 10.1186/1477-7525-2-46, 519026, 15350202.
3. Henderson M, Safa F, Easterbrook P, Hotopf M. Fatigue among HIV-infected patients in the era of highly active antiretroviral therapy. HIV Med 2005, 6(5):347-352. 10.1111/j.1468-1293.2005.00319.x, 16156883.
4. Blanch J, Rousaud A, Martinez E, De Lazzari E, Peri JM, Milinkovic A, Perez-Cuevas JB, Blanco JL, Gatell JM. Impact of lipodystrophy on the quality of life of HIV-1-infected patients. J Acquir Immune Defic Syndr 2002, 31(4):404-407.
5. Alonzo AA, Reynolds NR. Stigma, HIV and AIDS: an exploration and elaboration of a stigma trajectory. Soc Sci Med 1995, 41(3):303-315. 10.1016/0277-9536(94)00384-6, 7481925.
6. Palella FJ, Delaney KM, Moorman AC, Loveless MO, Fuhrer J, Satten GA, Aschman DJ, Holmberg SD. Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. HIV Outpatient Study Investigators. N Engl J Med 1998, 338(13):853-860. 10.1056/NEJM199803263381301, 9516219.
7. Rusch M, Nixon S, Schilder A, Braitstein P, Chan K, Hogg RS. Prevalence of activity limitation among persons living with HIV/AIDS in British Columbia. Can J Public Health 2004, 95(6):437-440.
8. Gaidhane AM, Syed Zahiruddin Q, Waghmare L, Zodpey S, Goyal RC, Johrapurkar SR. Assessing self-care component of activities and participation domain of the international classification of functioning, disability and health (ICF) among people living with HIV/AIDS. AIDS Care 2008, 1-7.
9. Willard S, Holzemer WL, Wantland DJ, Cuca YP, Kirksey KM, Portillo CJ, Corless IB, Rivero-Mendez M, Rosa ME, Nicholas PK, et al. Does "asymptomatic" mean without symptoms for those living with HIV infection?. AIDS Care 2009, 21(3):322-328. 10.1080/09540120802183511, 19280409.
10. Kiser AK, Pronovost PJ. Management of Diseases Without Current Treatment Options Something Can Be Done. JAMA 2009, 301(16):1708-1709. 10.1001/jama.2009.506, 19383962.
11. Weiss JJ, Osorio G, Ryan E, Marcus SM, Fishbein DA. Prevalence and patient awareness of medical comorbidities in an urban AIDS clinic. AIDS Patient Care STDS 2010, 24(1):39-48. 10.1089/apc.2009.0152, 20095901.
12. O'Brien KK, Bayoumi AM, Strike C, Young NL, Davis AM. Exploring disability from the perspective of adults living with HIV/AIDS: development of a conceptual framework. Health Qual Life Outcomes 2008, 6:76. 10.1186/1477-7525-6-76, 2572592, 18834538.
13. O'Brien KK, Davis AM, Strike C, Young NL, Bayoumi AM. Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS. J Int AIDS Soc 2009, 12(1):5. 10.1186/1758-2652-2-5, 19900284.
14. 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. 10.1007/BF00439716, 1301123.
15. Tsasis P. Health-related quality-of-life measurements in HIV/AIDS care. AIDS Patient Care STDS 2000, 14(8):427-438. 10.1089/108729100416641, 10977972.
16. Clayson DJ, Wild DJ, Quarterman P, Duprat-Lomon I, Kubin M, Coons SJ. A comparative review of health-related quality-of-life measures for use in HIV/AIDS clinical trials. Pharmacoeconomics 2006, 24(8):751-765. 10.2165/00019053-200624080-00003, 16898846.
17. Berzon RA, Lenderking WR. Evaluating the outcomes of HIV disease: focus on health status measurement. A Publication for Members of Medical Outcomes Trust. 1998, 3.
18. Cleary PD, Fowler FJ, Weissman J, Massagli MP, Wilson I, Seage GR, Gatsonis C, Epstein A. Health-related quality of life in persons with acquired immune deficiency syndrome. Medical Care 1993, 31(7):569-580. 10.1097/00005650-199307000-00001, 8326772.
19. Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. Jama 1995, 273(1):59-65. 10.1001/jama.273.1.59, 7996652.
20. Finch EP, Brooks D, Stratford P, Mayo N. Physical Rehabilitation Outcome Measures: A Guide to Enhanced Clinical Decision Making. 2002, Toronto, Ontario: Canadian Physiotherapy Association.
21. McCormick WC, Inui TS, Deyo RA, Wood RW. Long-term care needs of hospitalized persons with AIDS: a prospective cohort study. J Gen Intern Med 1991, 6(1):27-34. 10.1007/BF02599386, 1900329.
22. O'Dell MW, Crawford A, Bohi ES, Bonner FJ. Disability in persons hospitalized with AIDS. Am J Phys Med Rehabil 1991, 70(2):91-95. 10.1097/00002060-199104000-00008, 2009165.
23. O'Dell MW, Lubeck DP, O'Driscoll P, Matsuno S. Validity of the Karnofsky Performance Status in an HIV-infected sample. J Acquir Immune Defic Syndr Hum Retrovirol 1995, 10(3):350-357.
24. Manning PK, Cullum-Swan B. Narrative, content, and semiotic analysis. Handbook of Qualitative Research 1994, Thousand Oaks, California: Sage Publications Inc, Denzin NK, Lincoln YS.
25. De Boer JB, Sprangers MAG, Arronson NK, Lange JM, van Dam FS. The feasibility, reliability, and validity of the EORTC QLQ-C30 in assessing the quality of life of patients with symptomatic HIV infection or AIDS. Psychology & Health 1994, 9:65-77.
26. Bucciardini R, Murri R, Guarinieri M, Starace F, Martini M, Vatrella A, Cafaro L, Fantoni M, Grisetti R, Monforte A, et al. ISSQoL: a new questionnaire for evaluating the quality of life of people living with HIV in the HAART era. Qual Life Res 2006, 15(3):377-390. 10.1007/s11136-005-3212-1, 16547775.
27. Nokes KM, Wheeler K, Kendrew J. Development of an HIV assessment tool. Image J Nurs Sch 1994, 26(2):133-138. 10.1111/j.1547-5069.1994.tb00932.x, 8063320.
28. Fanning NM, Emmott S. Evaluation of a quality of life instrument of HIV/AIDS. AIDS Patient Care 1993, 7(3):161-162.
29. Cella DF, McCain NL, Peterman AH, Mo F, Wolen D. Development and validation of the Functional Assessment of Human Immunodeficiency Virus Infection (FAHI) quality of life instrument. Qual Life Res 1996, 5(4):450-463. 10.1007/BF00449920, 8840825.
30. 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. 10.1007/BF00704434, 1299472.
31. Holmes WC, Shea JA. A new HIV/AIDS-targeted quality of life (HAT-QoL) instrument: development, reliability, and validity. Med Care 1998, 36(2):138-154. 10.1097/00005650-199802000-00004, 9475469.
32. 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):585-594. 10.1023/A:1018468301617, 9330557.
33. Avis NE. Development of the MQoL-HIV: the multi-dimensional quality of life questionnaire with HIV/AIDS. Quality of Life Newsletter 1997, 17:3-4.
34. O'Connell K, Skevington S, Saxena S. Preliminary development of the World Health Organsiation's Quality of Life HIV instrument (WHOQOL-HIV): analysis of the pilot version. Soc Sci Med 2003, 57(7):1259-1275. 10.1016/S0277-9536(02)00506-3, 12899909.
35. Pakenham KI, Rinaldis M. Development of the HIV/AIDS Stress Scale. Psychology & Health 2002, 17(2):203-219.
36. Nixon S, Cott C. Shifting perspectives: reconceptualizing HIV disease within a rehabilitation framework. Physiotherapy Canada. Physiotherapy Canada 2000, 52:189-207.
37. Namisango E, Katabira E, Karamagi C, Baguma P. Validation of the Missoula-Vitas Quality-of-Life Index among patients with advanced AIDS in urban Kampala, Uganda. J Pain Symptom Manage 2007, 33(2):189-202. 10.1016/j.jpainsymman.2006.11.001, 17280924.
38. Robertson KR, Parsons TD, Rogers SA, Braaten AJ, Robertson WT, Wilson S, Hall CD. Assessing health-related quality of life in NeuroAIDS: some psychometric properties of the Neurological Quality of Life Questionnaire (NeuroQOL). J Clin Neurosci 2007, 14(5):416-423. 10.1016/j.jocn.2006.03.004, 17289392.
39. Murdaugh C, Moneyham L, Jackson K, Phillips K, Tavakoli A. Predictors of quality of life in HIV-infected rural women: psychometric test of the chronic illness quality of life ladder. Qual Life Res 2006, 15(5):777-789. 10.1007/s11136-005-5002-1, 16721638.
40. Lee D, Patel P, Sachs J, Basinger S, Mathews WC, Barber RE. Psychometric properties of a lipodystrophy scale. AIDS Patient Care STDS 2006, 20(1):30-35. 10.1089/apc.2006.20.30, 16426153.
41. Martinez SM, Kemper CA, Diamond C, Wagner G. Body image in patients with HIV/AIDS: assessment of a new psychometric measure and its medical correlates. AIDS Patient Care STDS 2005, 19(3):150-156. 10.1089/apc.2005.19.150, 15798382.
42. Guaraldi G, Orlando G, Murri R, Vandelli M, De Paola M, Beghetto B, Nardini G, Ciaffi S, Vichi F, Esposito, et al. Quality of life and body image in the assessment of psychological impact of lipodystrophy: validation of the Italian version of assessment of body change and distress questionnaire. Qual Life Res 2006, 15(1):173-178. 10.1007/s11136-005-8342-y, 16411042.
43. Mertz HR, Beck CK, Dixon W, Esquivel MA, Hays RD, Shapiro MF. Validation of a new measure of diarrhea. Dig Dis Sci 1995, 40(9):1873-1882. 10.1007/BF02208649, 7555436.
44. Barroso J, Lynn MR. Psychometric properties of the HIV-Related Fatigue Scale. J Assoc Nurses AIDS Care 2002, 13(1):66-75. 10.1016/S1055-3290(06)60242-2, 11828861.
45. Lubeck DP, Fries JF. Assessment of quality of life in early stage HIV-infected persons: data from the AIDS Time-oriented Health Outcome Study (ATHOS). Qual Life Res 1997, 6(6):494-506. 10.1023/A:1018404014821, 9330550.
46. 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):572-584. 10.1023/A:1018416317546, 9330556.
47. Ganz PA, Coscarelli Schag CA, Kahn B, Petersen L, Hirji K. 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(2):109-119. 10.1007/BF00435730, 8100162.
48. Holmes WC, Shea JA. Performance of a new, HIV/AIDS-targeted quality of life (HAT-QoL) instrument in asymptomatic seropositive individuals. Qual Life Res 1997, 6(6):561-571. 10.1023/A:1018464200708, 9330555.
49. 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. 10.1097/00005650-199407000-00005, 8028406.
50. 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. 10.1023/A:1018460132567, 9330553.
51. 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. 10.1023/A:1018451930750, 9330549.
52. Fang CT, Hsiung PC, Yu CF, Chen MY, Wang JD. Validation of the World Health Organization quality of life instrument in patients with HIV infection. Qual Life Res 2002, 11(8):753-762. 10.1023/A:1020870402019, 12482159.
53. WHOQOL (World Health Organization's Quality of Life Instrument) HIV Group Initial steps to developing the World Health Organization's Quality of Life Instrument (WHOQOL) module for international assessment in HIV/AIDS. AIDS Care 2003, 15(3):347-357. 10.1080/0954012031000105405, 12745402, WHOQOL (World Health Organization's Quality of Life Instrument) HIV Group.
54. Lenderking WR, Testa MA, Katzenstein D, Hammer S. Measuring quality of life in early HIV disease: the modular approach. Qual Life Res 1997, 6(6):515-530. 10.1023/A:1018408115729, 9330552.
55. Holzemer WL, Gygax Spicer J, Skodol Wilson H, Kemppainen JK, Coleman C. Validation of the quality of life scale: living with HIV. J Adv Nurs 1998, 28(3):622-630. 10.1046/j.1365-2648.1998.00800.x, 9756232.
56. Hays RD, Cunningham WE, Sherbourne CD, Wilson IB, Wu AW, Cleary PD, McCaffrey DF, Fleishman JA, Crystal S, Collins R, 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. 10.1016/S0002-9343(00)00387-9, 10924648.
57. AIDS Clinical Trials Group Outcomes Committee ACTG Quality of Life 601-602 Health Survey Manual. 1999, AIDS Clinical Trials Group Outcomes Committee.
58. Mayers AM, Khoo ST, Svartberg M. The Existential Loneliness Questionnaire: background, development, and preliminary findings. J Clin Psychol 2002, 58(9):1183-1193. 10.1002/jclp.10038, 12209873.
59. Ross MW, Hunter CE, Condon J, Collins P, Begley K. The Mental Adjustment to HIV scale: measurement and dimensions of response to AIDS/HIV disease. AIDS Care 1994, 6(4):407-411. 10.1080/09540129408258655, 7833358.
60. Thompson SC, Nanni C, Levine A. The stressors and stress of being HIV-positive. AIDS Care 1996, 8(1):5-14. 10.1080/09540129650125957, 8664369.
61. Justice AC, Holmes W, Gifford AL, Rabeneck L, Zackin R, Sinclair G, Weissman S, Neidig J, Marcus C, Chesney M, et al. Development and validation of a self-completed HIV symptom index. J Clin Epidemiol 2001, 54(Suppl 1):S77-90. 10.1016/S0895-4356(01)00449-8, 11750213.
62. Holzemer WL, Henry SB, Nokes KM, Corless IB, Brown MA, Powell-Cope GM, Turner JG, Inouye J. Validation of the Sign and Symptom Check-List for Persons with HIV Disease (SSC-HIV). J Adv Nurs 1999, 30(5):1041-1049. 10.1046/j.1365-2648.1999.01204.x, 10564402.
63. Burgess AP, Irving G, Riccio M. The reliability and validity of a symptom checklist for use in HIV infection: a preliminary analysis. Int J STD AIDS 1993, 4(6):333-338.
64. Holzemer WL, Hudson A, Kirksey KM, Hamilton MJ, Bakken S. The revised Sign and Symptom Check-List for HIV (SSC-HIVrev). J Assoc Nurses AIDS Care 2001, 12(5):60-70. 10.1016/S1055-3290(06)60263-X, 11565239.
65. Whalen CC, Antani M, Carey J, Landefeld CS. An index of symptoms for infection with human immunodeficiency virus: reliability and validity. J Clin Epidemiol 1994, 47(5):537-546. 10.1016/0895-4356(94)90300-X, 7730879.
66. Lopez OL, Wess J, Sanchez J, Dew MA, Becker JT. Neurobehavioral correlates of perceived mental and motor slowness in HIV infection and AIDS. J Neuropsychiatry Clin Neurosci 1998, 10(3):343-350.
67. Wagner GJ, Rabkin JG. Development of the Impact of Weight Loss Scale (IWLS): a psychometric study in a sample of men with HIV/AIDS. AIDS Care 1999, 11(4):453-457. 10.1080/09540129947848, 10533539.