Age-related macular degeneration and quality of life: How to interpret a research paper in health-related quality of life

Current Opinion in Ophthalmology

Volumn 15, Issue 3, 2004, Pages 227-231

  Sharma, Sanjay ^a   Oliver Fernandez, Alejandro ^a  

^a QUEEN S UNIVERSITY   (Canada)

Author keywords

Macular degeneration; NEI 25; NEI VFQ; Outcomes research; Patient reported outcomes; Quality of life

Indexed keywords

CLINICAL PRACTICE; HUMAN; INSTRUMENT; INTERVIEW; MEASUREMENT; MEDICAL DECISION MAKING; MEDICAL RESEARCH; PATIENT CARE; PRACTICE GUIDELINE; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; RETINA MACULA AGE RELATED DEGENERATION; REVIEW; SCORING SYSTEM; STATISTICAL SIGNIFICANCE; VALIDATION PROCESS;

CLINICAL TRIALS; HUMANS; MACULAR DEGENERATION; OUTCOME ASSESSMENT (HEALTH CARE); QUALITY OF LIFE; REPRODUCIBILITY OF RESULTS; SICKNESS IMPACT PROFILE;

EID: 2442438990     PISSN: 10408738     EISSN: None     Source Type: Journal    
DOI: 10.1097/01.icu.0000124082.88389.cf     Document Type: Review

References (31)

1. Age-Related Eye Disease Study Research Group: A randomized, placebo-controlled, clinical trial of high-dose supplementation with vitamins C and E, beta carotene, and zinc for age-related macular degeneration and vision loss. AREDS Report No. 8. Arch Ophthalmol 2001, 119:1417-1436.
2. Brody BL, Roch-Levecq A-C, Gamst AC, et al.: Self-management of age-related macular degeneration and quality of life. Arch Ophthalmol 2002, 120:1477-1463. In this article, the authors demonstrate the efficacy of a self-management program that results in a significant improvement in HRQoL and patient-reported visual function.
3. Lepege A, Hunt S: The problem of quality of life in medicine. JAMA 1997, 278:47-50.
4. Patrick DL, Bush JW, Chen MM: Toward an operational definition of health. J Health Soc Behav 1973, 14:6-23.
5. Massof RW, Rubin GS: Visual function assessment questionnaires. Surv Ophthalmol 2001, 45:531-548.
6. Hyland ME. Defining and measuring quality of life in medicine. JAMA 1998, 279:430-431; discussion 431.
7. Bergner M: Quality of life, health status, and clinical research. Med Care 1989;27(suppl 3):S148-S156.
8. Wilson IB, Cleary PD: Linking clinical variables with health-related quality of life. JAMA 1995, 1995:59-65.
9. Guyatt GH, Feeny DH, Patrick DL: Measuring health-related quality of life. Ann Intern Med 1993, 118:622-629.
10. Krause NM, Jay GM: What do global self-rated health items measure? Med Care 1994, 32:930-942.
11. Lohr KN, Aaronson NK, Alonso J, et al.: Evaluating quality-of-life and health status instruments: development of scientific review criteria. Clin Ther 1996, 18:979-992.
12. Berzon RA, Donnely MA, Simpson RL Jr, et al.: Quality of life bibliography and indexes: 1994 update. Qual Life Res 1995, 4:547-569.
13. Wright JG, Young NL: The patient-specific index: asking patients what they want. J Bone Joint Surg [Am] 1997, 79:974-983.
14. Hobson P, Holden A, Meara J: Measuring the impact of Parkinson's disease with the Parkinson's Disease Quality of Life questionnaire. Age Ageing 1999, 28:341-346.
15. Gill TM, Feinstein AR: A critical appraisal of the quality of quality-of-life measurements. JAMA 1994, 272:619-626.
16. Garratt A, Schmidt L, Mackintosh A, et al.: Quality of life measurement: bibliographic study of patient assessed health outcome measures. BMJ 2002, 324:1417.
17. Margolis MK, Coyne K, Kennedy-Martin T, et al.: Vision-specific instruments for the assessment of health-related quality of life and visual functioning: a literature review. Pharmacoeconomics 2002, 20:791-812.
18. Thier SO: Forces motivating the use of health status assessment measures in clinical settings and related clinical research. Med Care 1992;30(suppl):MS15-MS22.
19. Testa MA, Simonson DC: Assessment of quality of life outcomes. N Engl J Med 1996, 334:835-840.
20. Testa MA, Lenderking WR: Interpreting pharmacoeconomic and quality-of-life clinical trial data for use in therapeutics. Pharmacoeconomics 1992, 2:107-117.
21. Thorndike RM, Cunningham GK, Thorndike RL, et al.: Measurement and evaluation in psychology and education, edn 5. New York: Macmillan Publishing Co.; 1991.
22. Standards for educational and psychological testing. Washington, DC. American Educational Research Association, American Psychological Association, National Council on Measurement in Education, 1999.
23. Mangione CM, Berry S, Spritzer K, et al.: Identifying the content area for the 51-item National Eye Institute Visual Function Questionnaire. Arch Ophthalmol 1998, 116:227-233.
24. Guyatt GH, Kirshner B, Jaeschke R: Measuring health status: what are the necessary measurement properties? J Clin Epidemiol 1992, 45:1341-1345.
25. Juniper EF, Guyatt GH, Jaeschke R: How to develop and validate a new health-related quality of life instrument. In Quality of Life and Pharmacoeconomics in Clinical Trials, edn 2. Edited by Spilker B. Philadelphia: Lippincott-Raven Publishers; 1996:49-56.
26. Deyo RA, Diehr P, Patrick DL: Reproducibility and responsiveness of health status measures. Statistics and strategies for evaluation. Control Clin Trials 1991, 12(suppl):142S-158S.
27. Juniper EF, Guyatt GH, Ferrie PJ, et al.: Measuring quality of life in asthma. Am Rev Respir Dis 1993, 147:832-838.
28. Clemons TE, Chew EY, Bressler SB, et al.: Age-Related Eye Disease Study Research Group. National Eye Institute Visual Function Questionnaire in the Age-Related Eye Disease Study (AREDS): AREDS Report No. 10. Arch Ophthalmol 2003, 121:211-217. In this report, the AREDS investigators demonstrate that patients with advanced AMD have a lower NEI-VFQ score than those with earlier stages.
29. The Submacular Surgery Trials Research Group: Responsiveness of the National Eye Institute Visual Function Questionnaire to changes in visual acuity. Findings in patients with subfoveal choroidal neovascularization-SST Report No. 1. Arch Ophthalmol 2003, 121:531-539. In this article, the NEI VFQ is demonstrated to be sensitive to change in the better-seeing eye, and a "clinically meaningful" difference is determined.
30. Juniper EF, Guyatt GH, Willan A, et al.: Determining a minimal important change in a disease-specific Quality of Life Questionnaire. J Clin Epidemiol 1994, 47:81-87.
31. Jaeschke R, Singer J, Guyatt GH: Measurement of health status. Ascertaining the minimal clinically important difference. Control Clin Trials 1989, 10:407-415.