A review of selected patient-generated outcome measures and their application in clinical trials

Value in Health

Volumn 6, Issue 5, 2003, Pages 595-603

  Patel, Kavita K ^a   Veenstra, David L ^a   Patrick, Donald L ^a  

^a UNIVERSITY OF WASHINGTON   (United States)

Author keywords

AQLQ; Health related quality of life; Individualized measure; Patient Generated Index; Patient generated outcome measure; Repertory Grid; SEIQoL

Indexed keywords

ARTICLE; ASTHMA QUALITY OF LIFE QUESTIONNAIRE; CLINICAL TRIAL; DATA BASE; HUMAN; OUTCOMES RESEARCH; PATIENT GENERATED INDEX; PRIORITY JOURNAL; PSYCHOMETRY; QUALITY OF LIFE; RELIABILITY; REPERTORY GRID; SCHEDULE FOR THE EVALUATION OF INDIVIDUAL QUALITY OF LIFE; SCORING SYSTEM; STANDARDIZATION; VALIDATION PROCESS;

EID: 0141841674     PISSN: 10983015     EISSN: None     Source Type: Journal    
DOI: 10.1046/j.1524-4733.2003.65236.x     Document Type: Article

References (32)

1. Lacasse Y, Wong E, Guyatt GH. Individualising questionnaires. In: Joyce CRB, O'Boyle CA, McGee H, eds. Individual Quality of Life Approaches to Conceptualisation and Assessment. Amsterdam: Harwood Academic Publishers, 1999.
2. Carr AJ, Higginson IJ. Are quality of life measures patient centered? BMJ 2001;322:1357-60.
3. Joyce CRB, O'Boyle CA, McGee H, eds. Individual Quality of Life Approaches to Conceptualisation and Assessment. Amsterdam: Harwood Academic Publishers, 1999.
4. Scientific Advisory Committee of the Medical Outcomes Trust. Assessing health status and quality-of-life instruments: attributes review criteria. Qual Life Res 2002;11:193-205.
5. Anonymous. What is the PGI [Internet]? Dundee: University of Dundee, 2001 Jul 15 [accessed August 2, 2001]. Available from: http://www.dundee.ac.uk/epidemiology/pgi/patient_generated_index.htm.
6. Ruta D. Managing and Measuring Health Outcomes. Proceedings of the 1997 Annual Health Outcomes Conference on Managing and Measuring Health Outcomes: From Policy to Practice. Canberra, Australia: University of Wollongong, 1997 Oct.
7. Ruta DA, Garratt AM, Leng M, et al. A new approach to the measurement of quality of life: the Patient-Generated Index. Med Care 1994; 32:1109-26.
8. McGee HM, O'Boyle CA, Hickey A, et al. Assessing the quality of life of the individual: the SEIQoL with a healthy and a gastroenterology unit population. Psycol Med 1991;21:749-59.
9. Thunedborg K, Allerup P, Bech P, et al. Development of the repertory grid for measurement of individual quality of life in clinical trials. Int J Methods Psychiatr Res 1993;3:45-56.
10. Juniper EF, Guyatt GH, Epstein RS, et al. Evaluation of impairment of health related quality of life in asthma: development of a questionnaire for use in clinical trials. Thorax 1992;47:76-83.
11. Juniper EF, Buist AS, Cox FM, et al. Validation of a standardized version of the Asthma Quality of Life Questionnaire. Chest 1999;115:1265-70.
12. Ruta DA, Garratt AM, Russell IT. Patient centered assessment of quality of life for patients with four common conditions. Qual Health Care 1999;8:22-9.
13. O'Boyle CA, McGee H, O'Malley K, et al. Individual quality of life in patients undergoing hip replacement. Lancet 1992;339:1088-91.
14. Browne JP, O'Boyle CA, McGee HM, et al. Individual quality of life in the healthy elderly. Qual Life Res 1994;3:253-44.
15. Clarke S, Hickey A, O'Boyle C, et al. Assessing individual quality of life in amyotrophic lateral sclerosis. Qual Life Res 2001;10:149-58.
16. Bayle B, Kemoun G, Miguad H. Comparison of two modes of administration of a personalized quality of life scale in a longitudinal study of total hip arthroplasty. Joint Bone Spine 2000;67:101-6.
17. Browne JP, O'Boyle CA, McGee HM, et al. Development of a direct weighting procedure for quality of life domains. Qual Life Res 1997;6:301-9.
18. Waldron D, O'Boyle CA, Kearney M, et al. Quality-of-life measurement in advanced cancer: assessing the individual. J Clin Oncol 1999;17: 3603-11.
19. Herd RM, Tidman MJ, Ruta DA. Measurement of quality of life in atopic dermatitis: correlation and validation of two different methods. Br J Dermatol 1997;136:502-7.
20. Macduff C, Russell E. The problem of measuring change in individual health-related quality of life by postal questionnaire: use of the patient-generated index in a disabled population. Qual Life Res 1998;7:761-9.
21. Tully MP, Cantrill JA. The validity of the modified patient-generated index - a quantitative and qualitative approach. Qual Life Res 2000;9:509-20.
22. Jenkinson C, Stradling J, Petersen S. How should we evaluate health status? A comparison of three methods in patients presenting with obstructive sleep apnoea. Qual Life Res 1998;7:95-100.
23. Hickey AM, Bury G, O'Boyle CA, et al. A new short form individual quality of life measure (SEIQoL-DW): an application in a cohort of individuals with HIV/AIDS. BMJ 1996;313:29-33.
24. Campbell S, Whyte F. The quality of life of cancer patients participating in phase 1 clinical trials using SEIQoL-DW. J Adv Nurs 1999;30:335-43.
25. Prince PN, Gerber GJ. Measuring subjective quality of life in people with serious mental illness using the SEIQoL-DW. Qual Life Res 2001;10: 117-22.
26. Smith HJ, Taylor R, Mitchell A. A comparison of four quality of life instruments in cardiac patients: SF-36, QLI, QLMI, and SEIQoL. Heart 2000; 84:390-4.
27. Lintern TC, Beaumont JG, Kenealy PM, et al. Quality of life (QoL) in severely disabled multiple sclerosis patients: comparison of three QoL measures using multidimensional scaling. Qual Life Res 2001;10:371-8.
28. Muntner P, Sudre P, Pernerger TV. Comparison of the psychometric properties of the Asthma Quality of life Questionnaire (AQLQ) among 115 asthmatic adults assessed during acute hospitalization and as outpatients. Qual Life Res 2000;9:987-95.
29. Garratt AM, Hutchinson A, Russell I. Patient-assessed measures of health outcomes in asthma: a comparison of four approaches. Respir Med 2000;94:597-606.
30. Welton AJ, McGee HM, O'Boyle CA, et al. using a patient generated measure of quality of life in a long-term randomized controlled trial of hormone replacement therapy: a pilot study [abstract]. Qual Life Res 1997;6:741.
31. Ware JE Jr, Bjorner J, Kosinski M. Dynamic health assessments: the search for more practical and precise outcomes measures. Qol News Letter 21 1999;Jan-Apr:11-3.
32. Ware JE Jr, Bjorner JB, Kosiniski M. Practical implications of item response theory and computerized adaptive testing: a brief summary of ongoing studies of widely used headache impact scales. Med Care 2000;38(Suppl 2):S73-82.