Coordinating outcomes measurements in ataxia research: Do some widely used generic rating scales tick the boxes?

Movement Disorders

Volumn 21, Issue 9, 2006, Pages 1396-1403

  Riazi, Afsane ^a,b   Cano, Stefan J ^a   Cooper, J Mark ^c   Bradley, Jane L ^c   Schapira, Anthony H V ^c   Hobart, Jeremy C ^a,d  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b UNIVERSITY OF LONDON   (United Kingdom)

^c ROYAL FREE AND UNIVERSITY COLLEGE MEDICAL SCHOOL   (United Kingdom)

^d PENINSULA MEDICAL SCHOOL   (United Kingdom)

Author keywords

Friedreich's ataxia (FA); Health status measures; Patient based outcome measures; Psychometric

Indexed keywords

ACCURACY; ADULT; ARTICLE; BARTHEL INDEX; CONFIDENCE INTERVAL; DATA ANALYSIS; FEMALE; FRIEDREICH ATAXIA; GENERAL HEALTH QUESTIONNAIRE; GENETIC SCREENING; HEALTH SURVEY; HUMAN; MAJOR CLINICAL STUDY; MALE; OUTCOME ASSESSMENT; PRACTICE GUIDELINE; PRIORITY JOURNAL; PSYCHOMETRY; QUALITY CONTROL; RATING SCALE; RELIABILITY; SCORING SYSTEM; SHORT FORM 36; STATISTICAL SIGNIFICANCE; VALIDITY; ADOLESCENT; CLASSIFICATION; COMPARATIVE STUDY; DAILY LIFE ACTIVITY; GENETICS; MIDDLE AGED; NEUROLOGIC EXAMINATION; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; REPRODUCIBILITY; SICKNESS IMPACT PROFILE; STATISTICS;

ACTIVITIES OF DAILY LIVING; ADOLESCENT; ADULT; FEMALE; FRIEDREICH ATAXIA; HEALTH STATUS INDICATORS; HEALTH SURVEYS; HUMANS; MALE; MIDDLE AGED; NEUROLOGIC EXAMINATION; OUTCOME ASSESSMENT (HEALTH CARE); PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS; SICKNESS IMPACT PROFILE;

EID: 33750342408     PISSN: 08853185     EISSN: 15318257     Source Type: Journal    
DOI: 10.1002/mds.20985     Document Type: Article

References (41)

1. Ware JE Jr. Measuring patients' views: the optimum Outcome measure. Br Med J 1993;306:1429-1430.
2. McDowell I, Jenkinson C. Development standards for health measures. J Health Serv Res Policy 1996;1:238-246.
3. Trouillas P, Takayanagi T, Hallet M, et a]. International Cooperative Ataxia Rating Scale for pharmacological assessment of the cerebellar syndrome. J Neurol Sci 1997; 145:205-211.
4. Filla A, De Michele G, Caruso G, Marconi R, Campanella G. Genetic data and natural history of Friedreich's disease: a study of 80 Italian patients. J Neurol 1990;237:345-351.
5. Subramony SH, May W, Lynch D, et al. Measuring Friedreich's ataxia: interrater reliability of a neurologic rating scale. Neurology 2005;64:1261-1262.
6. Cano SJ, Hobart JC, Hart PE, Kolipara LVP, Schapira AHV, Cooper JM. The International Co-operative Ataxia Rating Scale (ICARS): an appropriate rating scale for Friedreich's Ataxia? Mov Disord 2005;20:1585-1591.
7. D'Ambrosio, R, Leone M, Rosso MG, Mittino D, Brignolio F. Disability and quality of life in hereditary ataxias: a self-administered postal questionnaire. Intl Disabil Stud 1987;9:10-14.
8. Gompertz P, Pound P, Ebrahim S. A postal version of the Barthel Index. Clin Rehab 1994;8:233-239.
9. Goldberg DP. Manual of the General Health Questionnaire. Windsor: NFER-Nelson; 1978.
10. EuroQol Group. EuroQoL: a new facility for the measurement of health-related quality of life. Health Policy 1990;16:199-208.
11. Ware JE Jr, Snow KK, Kosinski M, Gandek B. SF-36 Health Survey manual and interpretation guide. Boston: Nimrod Press; 1993.
12. Dillman DA. Mail and Telephone Surveys: The Total Design Method. New York: John Wiley and Sons; 1978.
13. Collin C, Wade DT, Davies S, Home V. The Barthel ADL Index: a reliability study. Int Disabil Stud 1988;10:61-63.
14. Hobart JC, Lamping DL, Thompson AJ. Measuring disability in neurological disease: validity of the self-report Barthel index. J Neurol 1996;243(Suppl. 2):S25.
15. Goldberg DP, Williams PA. User's guide to the GHQ. Windsor: NFER-Nelson; 1988.
16. Shiely J-C, Bayliss MS, Keller SD, Tsai C, Ware JE. SF-36 Health Survey annotated bibliography. Ist ed. (1999-1995) Boston: The Health Institute, New England Medical Center; 1996.
17. Rabin R, de Charro F. EQ-5D: a measure of health status from the EuroQol Group. Ann Med 2001;33:337-343.
18. Goldberg DP, Gater R, Sartorius N, et al. The validity of two versions of the GHQ in the WHO study of mental illness in general health care. Psychol Med 1997;27:191-197.
19. Wade DT. Measurement in neurological rehabilitation. Oxford: Oxford University Press; 1992.
20. Garrat AM, Ruta DA, Abdalla MI, Buckingham JK, Russell IT. The SF-36 health survey questionnaire: an outcome measure suitable for routine use within the NHS? Br Med J 1993;306:1440-1444.
21. EuroQol group. EuroQol a new facility for the measurement of health related quality of life. Health Policy 1990;16:199-208.
22. Hobart JC, Lamping DL, Fitzpatrick R, Riazi A, Thompson AJ. The Multiple Sclerosis Impact Scale (MSIS-29); a new patient based outcome measure. Brain 2001;124:962-973.
23. Hobart JC, Freeman J, Lamping DL, Fitzpatrick R, Thompson AJ. The SF-36 in multiple sclerosis: why basic assumptions'must be tested. J Neurol Neurosurg Psychiatry 2001;71:363-370.
24. Hobart JC, Freeman J, Thompson A. Kurtzke scales revisited: the application of psychometric methods to clinical intuition. Brain 2000; 123:1027-1040.
25. McHorney CA, Ware JE Jr, Lu JFR, Sherbourne CD. The MOS 36-Item Short-Form Health Survey (SF-36): Ill. Tests of data quality, scaling assumptions and reliability across diverse patient groups. Med Care 1994;32:40-66.
26. Likert RA. A technique for the development of attitudes. Arch Psychol 1932;140:5-55.
27. Ware JE, Harris WJ, Gandek B, Rogers BW. MAP-R for Windows: multi-trait- multi-item analysis program- revised user's guide. Item analysis program - revised user's guide. Boston: Health Assessment Lab; 1997.
28. Ware JE Jr, Davies-Avery A, Donald CA. Conceptualization and measurement of health for adults in the health insurance study: Vol. V. General health perceptions. Santa Monica, CA: The Rand Corporation; 1978.
29. Stewart AL, Ware JR Jr, editors. Measuring Functioning and Well-Being: The Medical Outcomes Study Approach. Durham, NC: Duke University Press; 1992.
30. Eisen M, Ware JE Jr, Donald CA, Brook RH. Measuring components of children's health status. Med Care 1979;17:902-921.
31. Holmes WC, Bix B, Shea JA. SF-20 score and item distributions in a human immunodeficiency virus-seropositive sample. Med Care 1996;34:562-569.
32. Guilford JP. Psychometric Methods. 2nd ed. New York: McGraw- Hill; 1954.
33. Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika 1951;16:297-334.
34. Nunnally JC, Bernstein IH. Psychometric Theory. 3rd ed. New York: McGraw-Hill; 1994.
35. Cronbach LJ, Meehl PE. Construct validity in psychological tests. Psychol Bull 1955;52:281-302.
36. Kazis LE, Anderson JJ, Meenan RF. Effect Sizes for interpreting Changes in Health Status. Med Care 1989;27:S178A189.
37. Cohen J. Statistical Power Analysis for the Behavioural Sciences. 1st ed. Hillside, NJ: Lawrence Erlbaum; 1969.
38. McHorney CA, Tarlov AR. Individual-patient monitoring in clinical practice: are available health status surveys adequate? Qual Life Res 1995;4:293-307.
39. Riazi A, Hobart JC, Lamping DL, et al. Using the SF-36 measure to compare the health impact of multiple sclerosis and Parkinson's disease with normal population health profiles. J Neurol Neurosurg Psychiatry 2003;74:710-714.
40. Hobart JC, Cano SJ, Thompson AJ. What sample sizes for reliability and validity studies? Qua] Life Res 2002;11:636.
41. Cano SJ, Warner TT, Hobart JC. What sample sizes for reliability and validity studies. II. A prospective study. Qua] Life Res 2003; 12:771.