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Arthritis Research & Therapy
Published in: Arthritis Research & Therapy 4/2006

Open Access 01-08-2006 | Research article

Validation of the International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis from the patient perspective using focus groups

Authors: Michaela Coenen, Alarcos Cieza, Tanja A Stamm, Edda Amann, Barbara Kollerits, Gerold Stucki

Published in: Arthritis Research & Therapy | Issue 4/2006

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Abstract

Functioning is recognized as an important study outcome in rheumatoid arthritis (RA). The Comprehensive ICF Core Set for RA is an application of the International Classification of Functioning, Disability and Health (ICF) of the World Health Organisation with the purpose of representing the typical spectrum of functioning of patients with RA. To strengthen the patient perspective, persons with RA were explicitly involved in the validation of the Comprehensive ICF Core Set for RA using qualitative methodology. The objective of the study was twofold: to come forward with a proposal for the most appropriate methodology to validate Comprehensive ICF Core Sets from the patient perspective; and to add evidence to the validation of the Comprehensive ICF Core Set for RA from the perspective of patients. The specific aims were to explore the aspects of functioning and health important to patients with RA using two different focus group approaches (open approach and ICF-based approach) and to examine to what extent these aspects are represented by the current version of the Comprehensive ICF Core Set for RA. The sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for the data analysis. After qualitative data analysis, the resulting concepts were linked to ICF categories according to established linking rules. Forty-nine patients participated in ten focus groups (five in each approach). Of the 76 ICF categories contained in the Comprehensive ICF Core Set for RA, 65 were reported by the patients based on the open approach and 71 based on the ICF-based approach. Sixty-six additional categories (open approach, 41; ICF-based approach, 57) that are not covered in the Comprehensive ICF Core Set for RA were raised. The existing version of the Comprehensive ICF Core Set for RA could be confirmed almost entirely by the two different focus group approaches applied. Focus groups are a highly useful qualitative method to validate the Comprehensive ICF Core Set for RA from the patient perspective. The ICF-based approach seems to be the most appropriate technique.
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Literature
1.
Cieza A, Stucki G: Understanding functioning, disability, and health in rheumatoid arthritis: the basis for rehabilitation care. Curr Opin Rheumatol. 2005, 17: 183-189. 10.1097/01.bor.0000151405.56769.e4.CrossRefPubMed
2.
Stucki G, Ewert T, Cieza A: Value and application of the ICF in rehabilitation medicine. Disabil Rehabil. 2002, 24: 932-938. 10.1080/09638280210148594.CrossRefPubMed
3.
Fries JF, Spitz P, Kraines RG, Holman HR: Measurement of patient outcome in arthritis. Arthritis Rheum. 1980, 23: 137-145.CrossRefPubMed
4.
5.
Guyatt GH, Feeny DH, Patrick DL: Measuring health-related quality of life. Ann Intern Med. 1993, 118: 622-629.CrossRefPubMed
6.
Cieza A, Brockow T, Ewert T, Amman E, Kollerits B, Chatterji S, Üstün TB, Stucki G: Linking health-status measurements to the International Classification of Functioning, Disability and Health. J Rehabil Med. 2002, 34: 205-210. 10.1080/165019702760279189.CrossRefPubMed
7.
Cieza A, Geyh S, Chatterji S, Kostanjsek N, Üstün B, Stucki G: ICF linking rules: an update based on lessons learned. J Rehabil Med. 2005, 37: 212-218. 10.1080/16501970510040263.CrossRefPubMed
8.
Stucki G, Cieza A: The International Classification of Functioning, Disability and Health (ICF) Core Sets for rheumatoid arthritis: a way to specify functioning. Ann Rheum Dis. 2004, 63 (Suppl 2): ii40-ii45. 10.1136/ard.2004.028233.PubMedCentralPubMed
9.
Carr A: Beyond disability: measuring the social and personal consequences of osteoarthritis. Osteoarthritis Cartilage. 1999, 7: 230-238. 10.1053/joca.1998.0154.CrossRefPubMed
10.
Schneidert M, Hurst R, Miller J, Üstün B: The role of environment in the International Classification of Functioning, Disability and Health (ICF). Disabil Rehabil. 2003, 25: 588-595. 10.1080/0963828031000137090.CrossRefPubMed
11.
Ueda S, Okawa Y: The subjective dimension of functioning and disability: what is it and what is it for?. Disabil Rehabil. 2003, 25: 596-601. 10.1080/0963828031000137108.CrossRefPubMed
12.
Üstün TB, Chatterji S, Bickenbach J, Kostanjsek N, Schneider M: The International Classification of Functioning, Disability and Health: a new tool for understanding disability and health. Disabil Rehabil. 2003, 25: 565-571. 10.1080/0963828031000137063.CrossRefPubMed
13.
Albers JM, Kuper HH, van Riel PL, Prevoo ML, van't Hof MA, van Gestel AM, Severens JL: Socio-economic consequences of rheumatoid arthritis in the first years of the disease. Rheumatology (Oxford). 1999, 38: 423-430. 10.1093/rheumatology/38.5.423.CrossRef
14.
Sokka T, Kautiainen H, Mottonen T, Hannonen P: Work disability in rheumatoid arthritis 10 years after the diagnosis. J Rheumatol. 1999, 26: 1681-1685.PubMed
15.
Young A, Dixey J, Cox N, Davies P, Devlin J, Emery P, Gallivan S, Gough A, James D, Prouse P, et al: How does functional disability in early rheumatoid arthritis (RA) affect patients and their lives? Results of 5 years of follow-up in 732 patients from the Early RA Study (ERAS). Rheumatology (Oxford). 2000, 39: 603-611. 10.1093/rheumatology/39.6.603.CrossRef
16.
Katz PP: The impact of rheumatoid arthritis on life activities. Arthritis Care Res. 1995, 8: 272-278.CrossRefPubMed
17.
World Health Organization: International Classification of Functioning, Disability and Health: ICF. 2001, Geneva: WHO
18.
Stucki G, Cieza A, Ewert T, Kostanjsek N, Chatterji S, Üstün TB: Application of the International Classification of Functioning, Disability and Health (ICF) in clinical practice. Disabil Rehabil. 2002, 24: 281-282. 10.1080/09638280110105222.CrossRefPubMed
19.
Cieza A, Ewert T, Üstün TB, Chatterji S, Kostansjek N, Stucki G: ICF Core Sets development for patients with chronic conditions. J Rehabil Med. 2004, 44 (Suppl): 9-11.PubMed
20.
Weigl M, Cieza A, Andersen C, Kollerits B, Amann E, Stucki G: Identification of relevant ICF categories in patients with chronic health conditions: A Delphi exercise. J Rehabil Med. 2004, 44 (Suppl): 12-21. 10.1080/16501960410015443.CrossRefPubMed
21.
Brockow T, Cieza A, Kuhlow H, Sigl T, Franke T, Harder M, Stucki G: Identifying the concepts contained in outcome measures of clinical trials on musculoskeletal disorders and chronic wide spread pain using the International Classification of Functioning, Disability and Health as a reference. J Rehabil Med. 2004, 44 (Suppl): 30-36. 10.1080/16501960410015371.CrossRefPubMed
22.
Ewert T, Fuessl M, Cieza A, Andersen C, Chatterji S, Kostanjsek N, Stucki G: Identification of the most common patient problems in patients with chronic conditions using the ICF checklist. J Rehabil Med. 2004, 44 (Suppl): 22-29. 10.1080/16501960410015362.CrossRefPubMed
23.
Stucki G, Cieza A, Geyh S, Battistella L, Lloyd J, Symmons D, Kostanjsek N, Schouten J: ICF Core Sets for rheumatoid arthritis. J Rehabil Med. 2004, 44 (Suppl): 87-93. 10.1080/16501960410015470.CrossRefPubMed
24.
Carr AJ, Hewlett S, Hughes R, Mitchell H, Ryan S, Carr M, Kirwan J: Rheumatology outcomes: the patient's perspective. J Rheumatol. 2003, 30: 880-883.PubMed
25.
Kirwan J, Heiberg T, Hewlett S, Hughes R, Kvien T, Ahlmen M, Boers M, Minnock P, Saag K, Shea B, et al: Outcomes from the Patient Perspective Workshop at OMERACT 6. J Rheumatol. 2003, 30: 868-872.PubMed
26.
27.
Giacomini MK, Cook DJ: Users' guides to the medical literature: XXIII. Qualitative research in health care, A. Are the results of the study valid. JAMA. 2000, 284: 357-362. 10.1001/jama.284.3.357.CrossRefPubMed
28.
Murphy E, Dingwall R, Greatbatch D, Parker S, Watson P: Qualitative Research Methods in Health Technology Assessment: a Review of the Literature. 1998, Southampton: Health Technology Assessment, 2 (16):
29.
Sim J: Collecting and analysing qualitative data: issues raised by the focus group. J Adv Nurs. 1998, 28: 345-352. 10.1046/j.1365-2648.1998.00692.x.CrossRefPubMed
30.
Morgan DL: Focus Groups as Qualitative Research. 1997, Thousand Oaks: Sage; Qualitative Research Methods, 2
31.
Vaughn S, Schumm JS, Sinagub J: Focus Group Interviews in Education and Psychology. 1996, Thousand Oaks: Sage
32.
Krueger RA, Casey MA: Focus Groups: a Practical Guide for Applied Research. 2000, Thousand Oaks: SageCrossRef
33.
Morse JM: Critical Issues in Qualitative Research Methods. 1994, Thousand Oaks: Sage
34.
Morgan DL, Krueger RA: When to use focus groups and why. Successful Focus Groups: Advancing the State of the Art. Edited by: Morgan DL. 1993, Newbury Park: Sage, 3-19.CrossRef
35.
36.
Powell RA, Single HM, Lloyd KR: Focus groups in mental health research: enhancing the validity of user and provider questionnaires. Int J Soc Psychiatry. 1996, 42: 193-206.PubMed
37.
Arnett FC, Edworthy SM, Bloch DA, McShane DJ, Fries JF, Cooper NS, Healey LA, Kaplan SR, Liang MH, Luthra HS, et al: The American Rheumatism Association 1987 revised criteria for the classification of rheumatoid arthritis. Arthritis Rheum. 1988, 31: 315-324.CrossRefPubMed
38.
Patton MQ: Qualitative Evaluation and Research Methods. 1990, Newbury Park: Sage
39.
Kvale S: Interviews - An Introduction to Qualitative Research Interviewing. 1996, California: Sage
40.
Karlsson G: Psychological Qualitative Research from a Phenomenological Perspective. 1995, Stockholm: Almquist & Wiskell International
41.
Cohen J: A coefficient of agreement for nominal scales. Educ Psychol Meas. 1960, 20: 37-46.CrossRef
42.
43.
Ahlmén M, Nordenskiöld U, Archenholtz B, Thyberg I, Rönnqvist T, Lindén L, Andersson A-K, Mannerkorpi K: Rheumatology outcomes: the patient's perspective. A multicentre focus group interview study of Swedish rheumatoid arthritis patients. Rheumatology. 2005, 44: 105-110. 10.1093/rheumatology/keh412.CrossRefPubMed
44.
Lambert BL, Butin DN, Moran D, Zhao SZ, Carr BC, Chen C, Kizis FJ: Arthritis care: Comparison of physicians' and patients' views. Semin Arthritis Rheum. 2000, 30: 100-110. 10.1053/sarh.2000.9203.CrossRefPubMed
45.
Quest E, Aanerud GJ, Kaarud S, Collins S, Leong A, Smedeby B, Denny-Waters A, Mellors R, Taylor D, de Witt M, (Patient Perspective Group): Patients' perspective. J Rheumatol. 2003, 30: 884-885.PubMed
46.
Wirnsberger RM, De Vries J, Jansen TLThA, Van Heck GL, Wouters EFM, Drent M: Impairment of quality of life: rheumatoid arthritis versus sarcoidosis. Neth J Med. 1999, 54: 86-95. 10.1016/S0300-2977(98)00148-X.CrossRefPubMed
47.
Borchers AT, Keen CL, Cheema GS, Gershwin ME: The use of methotrexate in rheumatoid arthritis. Semin Arthritis Rheum. 2004, 34: 465-483. 10.1016/j.semarthrit.2003.12.003.CrossRefPubMed
48.
Risley S, Thomas MA, Bray V: Rheumatoid arthritis, new standards of care: nursing implications of infliximab. J Orthop Res. 2004, 8: 41-49.
49.
Stamm TA, Cieza A, Coenen M, Machold KP, Nell VPK, Smolen JS, Stucki G: Validating the International Classification of Functioning, Disability and Health Comprehensive Core Set for rheumatoid arthritis from the patient perspective: a qualitative study. Arthritis Rheum. 2005, 53: 431-439. 10.1002/art.21159.CrossRefPubMed
50.
Goodacre LJ, Goodacre JA: Factors influencing the beliefs of patients with rheumatoid arthritis regarding disease-modifying medication. Rheumatology. 2004, 43: 583-586. 10.1093/rheumatology/keh116.CrossRefPubMed
51.
Deman AM, Brooks PM: Antirheumatic therapy. Oxford Textbook of Rheumatology. Edited by: Maddison PJ, Isenberg DA, Woo P, Glass DN. 1993, Oxford: Oxford University Press, 329-349.
52.
Schattenkirchner M: The use of leflunomide in the treatment of rheumatoid arthritis: an experimental and clinical review. Immunopharmacology. 2000, 47: 291-298. 10.1016/S0162-3109(00)00194-6.CrossRefPubMed
53.
Brooks PM: Drug modification of inflammation - non-steroidal anti-inflammatory drugs. Oxford Textbook of Rheumatology. Edited by: Maddison PJ, Isenberg DA, Woo P, Glass DN. 1993, Oxford: Oxford University Press, 323-328.
54.
Richy F, Bruyere O, Ethgen O, Rabenda V, Bouvenot G, Audran M, Herrero-Beaumont G, Moore A, Eliakim R, Haim M, Reginster JY: Time dependent risk of gastrointestinal complications induced by non-steroidal anti-inflammatory drug use: a consensus statement using a meta-analytic approach. Ann Rheum Dis. 2004, 63: 759-766. 10.1136/ard.2003.015925.PubMedCentralCrossRefPubMed
55.
Bijlsma JWJ, Boers M, Saag KG, Furst DE: Glucocorticoids in the treatment of early and late RA. Ann Rheum Dis. 2003, 62: 1033-1037. 10.1136/ard.62.11.1033.PubMedCentralCrossRefPubMed
56.
Carnahan MC, Goldstein DA: Ocular complications of topical, peri-ocular, and systemic corticosteroids. Curr Opin Ophthalmol. 2000, 11: 478-483.CrossRefPubMed
57.
Saag KG: Low-dose corticosteroid therapy in rheumatoid arthritis: balancing the evidence. Am J Med. 1997, 103: 31S-39S. 10.1016/S0002-9343(97)90006-1.CrossRefPubMed
58.
Saag KG, Koehnke R, Caldwell JR, Brasington R, Burmeister LF, Zimmerman B, Kohler JA, Furst DE: Low dose long-term corticosteroid therapy in rheumatoid arthritis: An analysis of serious adverse events. Am J Med. 1994, 96: 115-123. 10.1016/0002-9343(94)90131-7.CrossRefPubMed
59.
Axelrod L: Glucocorticoids. Textbook of Rheumatology. Edited by: Kelly WN, Harris ED, Ruddy S, Sledge GB. 1993, Philadelphia: WB Saunders, 779-796.
60.
Berry D, Bradlow A, Bersellini E: Perceptions of the risks and benefits of medicines in patients with rheumatoid arthritis and other painful musculoskeletal conditions. Rheumatology. 2004, 43: 901-905. 10.1093/rheumatology/keh196.CrossRefPubMed
61.
Marshall NJ, Wilson G, Lapworth K, Kay LJ: Patients' perceptions of treatment with anti-TNF therapy for rheumatoid arthritis: a qualitative study. Rheumatology. 2004, 43: 1034-1038. 10.1093/rheumatology/keh237.CrossRefPubMed
62.
Westhoff G, Listing J, Zink A: Loss of physical independence in rheumatoid arthritis: Interview data from a representative sample of patients in rheumatologic care. Arthritis Care Res. 2000, 13: 11-22. 10.1002/1529-0131(200002)13:1<11::AID-ART4>3.0.CO;2-5.CrossRefPubMed
63.
Albers JM, Kuper HH, van Riel PL, Prevoo ML, 't Hof MA, van Gestel AM, Severens JL: Socio-economic consequences of rheumatoid arthritis in the first years of the disease. Rheumatology. 1999, 38: 423-430. 10.1093/rheumatology/38.5.423.CrossRefPubMed
64.
Walker JG, Littlejohn GO, McMurray NE, Cutolo M: Stress system response and rheumatoid arthritis: a multilevel approach. Rheumatology. 1999, 38: 1050-1057. 10.1093/rheumatology/38.11.1050.CrossRefPubMed
65.
Evers AWM, Kraaimaat FW, Geenen R, Jacobs JWG, Bijlsma JWJ: Pain coping and social support as predictors of long-term functional disability and pain in early rheumatoid arthritis. Behav Res Ther. 2003, 41: 1295-1310. 10.1016/S0005-7967(03)00036-6.CrossRefPubMed
66.
Sokka T, Kautiainen H, Mottonen T, Hannonen P: Work disability in rheumatoid arthritis 10 years after the diagnosis. J Rheumatol. 1999, 26: 1681-1685.PubMed
67.
Young A, Dixey J, Cox N, Davies P, Devlin J, Emery P, Gallivan S, Gough A, James D, Prouse P, et al: How does functional disability in early rheumatoid arthritis (RA) affect patients and their lives? Results of 5 years of follow-up in 732 patients from the Early RA Study (ERAS). Rheumatology. 2000, 39: 603-611. 10.1093/rheumatology/39.6.603.CrossRefPubMed
68.
Doeglas D, Suurmeijer T, Krol B, Sanderman R, van Leeuwen M, van Rijswijk M: Work disability in early rheumatoid arthritis. Ann Rheum Dis. 1995, 54: 455-460.PubMedCentralCrossRefPubMed
69.
Huelsemann JL, Mittendorf T, Merkesdal S, Zeh S, Handelmann S, von der Schulenburg J-M, Zeidler H, Ruof J: Direct costs related to rheumatoid arthritis: The patient perspective. Ann Rheum Dis. 2005, 64: 1456-1461. 10.1136/ard.2004.031880.CrossRef
70.
Lapsley HM, March LM, Tribe KL, Cross MJ, Courtenay BG, Brooks PM: Arthritis Cost and Outcome Project Group. Living with rheumatoid arthritis: expenditures, health status, and social impact on patients. Ann Rheum Dis. 2002, 61: 818-821. 10.1136/ard.61.9.818.PubMedCentralCrossRefPubMed
71.
Curtis S, Gesler W, Smith G, Washburn S: Approaches to sampling and case selection in qualitative research: examples in the geography of health. Soc Sci Med. 2000, 50: 1001-1014. 10.1016/S0277-9536(99)00350-0.CrossRefPubMed
72.
Knodel J: The design and analysis of focus group studies. Successful Focus Groups: Advancing the State of the Art. 1993, Morgan DL. Newbury Park: Sage, 35-50.CrossRef
73.
74.
Carey AM: The group effect in focus groups: planning, implementing, and interpreting focus group research. Critical Issues in Qualitative Research Methods. Edited by: Morse JM. 1994, Thousand Oaks: Sage, 225-241.
75.
Zink A, Listing J, Klindworth C, Zeidler H: The national database of the German Collaborative Arthritis Centres: I. Structures, aims, and patients. Ann Rheum Dis. 2001, 60: 199-206. 10.1136/ard.60.3.199.PubMedCentralCrossRefPubMed
76.
Denzin NK: The Research Act: a Theoretical Introduction to Sociological Methods. 1978, New York: McGraw-Hill
77.
Barbour R: Checklists for improving rigour in qualitative research: a case of the tail wagging the dog?. BMJ. 2001, 322: 1115-1117. 10.1136/bmj.322.7294.1115.PubMedCentralCrossRefPubMed
78.
Pope C, Ziebland S, Mays N: Qualitative research in health care: Analysing qualitative data. Br Med J. 2000, 320: 114-116.CrossRef
79.
Landis JR, Koch GG: The measurement of observer agreement for categorial data. Biometrics. 1977, 33: 159-174.CrossRefPubMed
Metadata
Title
Validation of the International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis from the patient perspective using focus groups
Authors
Michaela Coenen
Alarcos Cieza
Tanja A Stamm
Edda Amann
Barbara Kollerits
Gerold Stucki
Publication date
01-08-2006
Publisher
BioMed Central
Published in
Arthritis Research & Therapy / Issue 4/2006
Electronic ISSN: 1478-6362
DOI
https://doi.org/10.1186/ar1956

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