Do patient-reported outcome measures cover personal factors important to people with rheumatoid arthritis? A mixed methods design using the International Classification of Functioning, Disability and Health as frame of reference

Health and Quality of Life Outcomes

Volumn 13, Issue 1, 2015, Pages

  Dür, Mona ^a,b   Coenen, Michaela ^c   Stoffer, Michaela Alexandra ^a   Fialka Moser, Veronika ^a   Kautzky Willer, Alexandra ^a   Kjeken, Ingvild ^d   Drăgoi, Răzvan Gabriel ^e   Mattsson, Malin ^f,g   Boström, Carina ^h   Smolen, Josef ^a   Stamm, Tanja Alexandra ^a,i  

^a MEDICAL UNIVERSITY OF VIENNA   (Austria)

^b IMC UNIVERSITY OF APPLIED SCIENCES KREMS   (Austria)

^c UNIVERSITY OF MUNICH   (Germany)

^d DIAKONHJEMMET HOSPITAL   (Norway)

^e VICTOR BABES NATIONAL INSTITUTE OF PATHOLOGY   (Romania)

^f LULEÅ UNIVERSITY OF TECHNOLOGY   (Sweden)

^g SUNDERBY HOSPITAL   (Sweden)

^h KAROLINSKA INSTITUTE   (Sweden)

ⁱ Fachhochschule Campus Wien   (Austria)

Author keywords

Health promotion; Outcome research; Patient perspective; Qualitative research methods; Rehabilitation

Indexed keywords

ADULT; ARTHRITIS SELF EFFICACY SCALE; ARTICLE; CLINICAL ARTICLE; COPING BEHAVIOR; COPING BEHAVIOR ASSESMENT; FEMALE; GENERAL SELF EFFICACY SCALE; HUMAN; INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH; JOB SATISFACTION; LONDON COPING WITH RHEUMATOID ARTHRITIS QUESTIONNAIRE; MALE; MIXED METHODS DESIGN; OPTIMISM; OUTCOME ASSESSMENT; PATIENT ATTITUDE; PATIENT REPORTED OUTCOME MEASURE; QUALITATIVE RESEARCH; REVISED WAYS OF COPING INVENTORY; RHEUMATOID ARTHRITIS; RHEUMATOID ARTHRITIS SELF EFFICACY QUESTIONNAIRE; SELF REPORT; STUDY DESIGN; CLASSIFICATION; DISABLED PERSON; INTERNATIONAL CLASSIFICATION OF DISEASES; MIDDLE AGED; PROCEDURES; PSYCHOLOGY; QUALITY OF LIFE; STANDARDS; WORLD HEALTH ORGANIZATION;

ADULT; ARTHRITIS, RHEUMATOID; DISABLED PERSONS; FEMALE; HUMANS; INTERNATIONAL CLASSIFICATION OF DISEASES; MIDDLE AGED; OUTCOME ASSESSMENT (HEALTH CARE); PATIENT OUTCOME ASSESSMENT; QUALITY OF LIFE; WORLD HEALTH ORGANIZATION;

EID: 84928141064     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/s12955-015-0214-8     Document Type: Article

References (89)

1. WHO. The Burden of Musculoskeletal Conditions at the Start of the New Millenium, Technical Report Series,No.919. Geneva: World Health Organization; 2003.
2. Lesuis N, Befrits R, Nyberg F, van Vollenhoven RF. Gender and the treatment of immune-mediated chronic inflammatory diseases: rheumatoid arthritis, inflammatory bowel disease and psoriasis: an observational study. BMC Med. 2012;10:82.
3. Cutolo M, Kitas GD, van Riel PL. Burden of disease in treated rheumatoid arthritis patients: Going beyond the joint. Semin Arthritis Rheum. 2014;43:479-88.
4. Demmelmaier I, Bergman P, Nordgren B, Jensen I, Opava CH. Current and maintained health-enhancing physical activity in rheumatoid arthritis: a cross-sectional study. Arthritis Care Res (Hoboken). 2013;65:1166-76.
5. Dickens C, McGowan L, Clark-Carter D, Creed F. Depression in rheumatoid arthritis: A systematic review of the literature with meta-analysis. Psychosom Med. 2002;64:52-60.
6. WHO. ICF - International Classification of Functioning, Disability and Health. Geneva: World Health Organization; 2001.
7. WHO. How to use the ICF: A practical manual for using the International Classification of Functioning, Disability and Health (ICF). Exposure draft for comment. Geneva: World Health Organization; 2013.
8. Grotkamp S, Cibis W, Nuchtern E, von Mittelstaedt G, Seger W. Personal Factors in the International Classification of Functioning, Disability and Health: Prospective Evidence. Aust J Rehab Couns. 2012;18:1-24.
9. Geyh S, Peter C, Muller R, Bickenbach JE, Kostanjsek N, Ustun BT, et al. The Personal Factors of the International Classification of Functioning, Disability and Health in the literature - a systematic review and content analysis. Disabil Rehabil. 2011;33:1089-102.
10. Ng L, Khan F. Identification of personal factors in motor neurone disease: a pilot study. Rehabil Res Pract. 2011;2011:7.
11. Stucki G, Cieza A, Geyh S, Battistella L, Lloyd J, Symmons D, et al. ICF. Core Sets for rheumatoid arthritis. J Rehabil Med. 2004;(44 Suppl):87-93.
12. Gebhardt C, Kirchberger I, Stucki G, Cieza A. Validation of the comprehensive ICF Core Set for rheumatoid arthritis: The perspective of physicians. J Rehabil Med. 2010;42:780-8.
13. Kirchberger I, Cieza A, Stucki G. Validation of the Comprehensive ICF Core Set for rheumatoid arthritis: The perspective of psychologists. Psychol Health. 2008;23:639-59.
14. Coenen M, Cieza A, Stamm TA, Amann E, Kollerits B, Stucki G. Validation of the International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis from the patient perspective using focus groups. Arthritis Res Ther. 2006;8:R84.
15. Stamm TA, Cieza A, Coenen M, Machold KP, Nell VP, Smolen JS, et al. 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;53:431-9.
16. Ahlstrand I, Bjork M, Thyberg I, Borsbo B, Falkmer T. Pain and daily activities in rheumatoid arthritis. Disabil Rehabil. 2012;34:1245-53.
17. Primdahl J, Wagner L, Horslev-Petersen K. Being an outpatient with rheumatoid arthritis-a focus group study on patients' self-efficacy and experiences from participation in a short course and one of three different outpatient settings. Scand J Caring Sci. 2011;25:394-403.
18. Kuspinar A, Mayo NE. Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis? Health Qual Life Outcomes. 2013;11:71.
19. Stamm TA, Nell V, Mathis M, Coenen M, Aletaha D, Cieza A, et al. Concepts important to patients with psoriatic arthritis are not adequately covered by standard measures of functioning. Arthritis Rheum. 2007;57:487-94.
20. Stamm TA, Bauernfeind B, Coenen M, Feierl E, Mathis M, Stucki G, et al. Concepts important to persons with systemic lupus erythematosus and their coverage by standard measures of disease activity and health status. Arthritis Rheum. 2007;57:1287-95.
21. Lazarus RS, Folkman S. Stress, Appraisal, and Coping. New York: Springer; 1984.
22. Steptoe A, Dockray S, Wardle J. Positive affect and psychobiological processes relevant to health. J Pers. 2009;77:1747-76.
23. Meesters J, Verhoef J, Tijhuis G, Vliet Vlieland T. Functional disability in patients with rheumatoid arthritis admitted for multidisciplinary rehabilitation from 1992 to 2009. Rheumatology (Oxford). 2013;52:1879-83.
24. Woolf AD, Erwin J, March L. The need to address the burden of musculoskeletal conditions. Best Pract Res Clin Rheumatol. 2012;26:183-224.
25. Englbrecht M, Gossec L, DeLongis A, Scholte-Voshaar M, Sokka T, Kvien TK, et al. The impact of coping strategies on mental and physical well-being in patients with rheumatoid arthritis. Semin Arthritis Rheum. 2012;41:545-55.
26. Zwikker HE, van den Ende CH, van Lankveld WG, den Broeder AA, van den Hoogen FH, van de Mosselaar B, et al. Effectiveness of a group-based intervention to change medication beliefs and improve medication adherence in patients with rheumatoid arthritis: a randomized controlled trial. Patient Educ Couns. 2014;94:356-61.
27. Dür M, Steiner G, Fialka-Moser V, Kautzky-Willer A, Dejaco C, Prodinger B, et al. Development of a new occupational balance-questionnaire: incorporating the perspectives of patients and healthy people in the design of a self-reported occupational balance outcome instrument. Health Qual Life Outcomes. 2014;12:45.
28. Dür M, Sadlonova M, Haider S, Binder A, Stoffer M, Coenen M, et al. Health determining concepts important to people with Crohn's disease and their coverage by patient-reported outcomes of health and wellbeing. J Crohns Colitis. 2014;8:45-55.
29. Stamm TA, Lovelock L, Stew G, Nell V, Smolen J, Machold K, et al. I have a disease but I am not ill: A narrative study of occupational balance in people with rheumatoid arthritis. OTJR. 2009;29:32-9.
30. Stamm T, Lovelock L, Stew G, Nell V, Smolen J, Jonsson H, et al. I have mastered the challenge of living with a chronic disease: Life stories of people with rheumatoid arthritis. Qual Health Res. 2008;18:658-69.
31. Arnett FC, Edworthy SM, Bloch DA, McShane DJ, Fries JF, Cooper NS, et al. The American Rheumatism Association 1987 revised criteria for the classification of rheumatoid arthritis. Arthritis Rheum. 1988;31:315-24.
32. Jones K. The turn to a narrative knowing of persons: One method explored. Nurs Time Res. 2002;1:1-11.
33. Wengraf T. Qualitative Research Interviewing: Biographic Narratives and Semi-Structured Methods. London: Sage Publications; 2001.
34. Rosenthal G. Reconstruction of Life Stories. Principles of Selection in Generating Stories of Narrative Biographical Interviews. In: Josselson R, Lieblich A, editors. The Narrative Study of Lives. Thousand Oaks: Sage; 1993. p. 59-91.
35. Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun B, Stucki G. ICF linking rules: an update based on lessons learned. J Rehabil Med. 2005;37:212-8.
36. Meenan RF, Mason JH, Anderson JJ, Guccione AA, Kazis LE. AIMS2. The content and properties of a revised and expanded Arthritis Impact Measurement Scales Health Status Questionnaire. Arthritis Rheum. 1992;35:1-10.
37. Li T, Wells G, Westhovens R, Tugwell P. Validation of a simple activity participation measure for rheumatoid arthritis clinical trials. Rheumatology (Oxford). 2009;48:170-5.
38. Lorig K, Chastain RL, Ung E, Shoor S, Holman HR. Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arthritis Rheum. 1989;32:37-44.
39. Newth S, Delongis A. Individual differences, mood, and coping with chronic pain in rheumatoid arthritis: A daily process analysis. Psychol Health. 2004;19:283-305.
40. Nicklin J, Cramp F, Kirwan J, Urban M, Hewlett S. Collaboration with patients in the design of patient-reported outcome measures: capturing the experience of fatigue in rheumatoid arthritis. Arthritis Care Res (Hoboken). 2010;62:1552-8.
41. Chalder T, Berelowitz G, Pawlikowska T, Watts L, Wessely S, Wright D, et al. Development of a fatigue scale. J Psychosom Res. 1993;37:147-53.
42. Vercoulen JHMM, Swanink CMA, Fennis JFM, Galama JMD, Vandermeer JWM, Bleijenberg G. Dimensional Assessment of Chronic Fatigue Syndrome. J Psychosom Res. 1994;38:383-92.
43. Carr A. A Patient-centred Approach to Evaluation and Treatment in Rheumatoid Arthritis: the Development of a Clinical Tool to Measure Patient-perceived Handicap. Br J Rheumatol. 1996;35:921-32.
44. Kristjansson E, Tugwell PS, Wilson AJ, Brooks PM, Driedger SM, Gallois C, et al. Development of the effective musculoskeletal consumer scale. J Rheumatol. 2007;34:1392-400.
45. Rabin R, de Charro F. EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001;33:337-43.
46. Yellen SB, Cella DF, Webster K, Blendowski C, Kaplan E. Measuring fatigue and other anemia-related symptoms with the Functional Assessment of Cancer Therapy (FACT) measurement system. J Pain Symptom Manage. 1997;13:63-74.
47. Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD. The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Arch Neurol. 1989;46:1121-3.
48. Jerusalem M, Schwarzer R. Self-efficacy as a resource factor in stress appraisal processes. In: Schwarzer R, editor. Self-Efficacy: Thought Control of Action. Washington DC: Hemisphere; 1992.
49. Schwarzer R. Measurement of Perceived Self-Efficacy: Psychometric Scales for Cross-Cultural Research. Berlin: Freie Universität Berlin, Institut für Psychologie; 1993.
50. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361-70.
51. Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arthritis Rheum. 1980;23:137-45.
52. Wolfe F, Michaud K, Pincus T. Development and validation of the health assessment questionnaire II: A revised version of the health assessment questionnaire. Arthritis Rheum. 2004;50:3296-305.
53. Fries JF, Spitz PW, Young DY. The dimensions of health outcomes: The health assessment questionnaire, disability and pain scales. J Rheumatol. 1982;9:789-93.
54. Niedermann K, Forster A, Ciurea A, Hammond A, Uebelhart D, de Bie R. Development and psychometric properties of a joint protection self-efficacy scale. Scand J Occup Ther. 2011;18:143-52.
55. Newman S, Fitzpatrick R, Lamb R, Shipley M. Patterns of Coping in Rheumatoid Arthritis. Psychol Health. 1990;4:187-200.
56. Scheier MF, Carver CS. Optimism, coping, and health: assessment and implications of generalized outcome expectancies. Health Psychol. 1985;4:219-47.
57. Tack B. Dimensions and correlates of fatigue in older adults with rheumatoid arthritis. San Francisco: University of California; 1991.
58. Smets EM, Garssen B, Bonke B, De Haes JC. The Multidimensional Fatigue Inventory (MFI) psychometric qualities of an instrument to assess fatigue. J Psychosom Res. 1995;39:315-25.
59. Pincus T, Summey JA, Soraci Jr SA, Wallston KA, Hummon NP. Assessment of patient satisfaction in activities of daily living using a modified Stanford Health Assessment Questionnaire. Arthritis Rheum. 1983;26:1346-53.
60. Wallston KA, Stein MJ, Smith CA. Form C of the MHLC scales: a condition-specific measure of locus of control. J Pers Assess. 1994;63:534-53.
61. Hewlett S, Smith AP, Kirwan JR. Measuring the meaning of disability in rheumatoid arthritis: the Personal Impact Health Assessment Questionnaire (PI HAQ). Ann Rheum Dis. 2002;61:986-93.
62. Salaffi F, Migliore A, Scarpellini M, Corsaro SM, Lagana B, Mozzani F, et al. Psychometric properties of an index of three patient reported outcome (PRO) measures, termed the CLinical ARthritis Activity (PRO-CLARA) in patients with rheumatoid arthritis. The NEW INDICES study. Clin Exp Rheumatol. 2010;28:186-200.
63. Gossec L, Dougados M, Rincheval N, Balanescu A, Boumpas DT, Canadelo S, et al. Elaboration of the preliminary Rheumatoid Arthritis Impact of Disease (RAID) score: a EULAR initiative. Ann Rheum Dis. 2009;68:1680-5.
64. Pincus T, Swearingen CJ, Bergman M, Yazici Y. RAPID3 (Routine Assessment of Patient Index Data 3), a rheumatoid arthritis index without formal joint counts for routine care: proposed severity categories compared to disease activity score and clinical disease activity index categories. J Rheumatol. 2008;35:2136-47.
65. Whalley D, McKenna SP, de Jong Z, van der Heijde D. Quality of life in rheumatoid arthritis. Br J Rheumatol. 1997;36:884-8.
66. Salaffi F, Bazzichi L, Stancati A, Neri R, Cazzato M, Consensi A, et al. Development of a functional disability measurement tool to assess early arthritis: the Recent-Onset Arthritis Disability (ROAD) questionnaire. Clin Exp Rheumatol. 2005;23:628-36.
67. Hewlett S, Cockshott Z, Kirwan J, Barrett J, Stamp J, Haslock I. Development and validation of a self-efficacy scale for use in British patients with rheumatoid arthritis (RASE). Rheumatology (Oxford). 2001;40:1221-30.
68. Leeb BF, Sautner J, Andel I, Rintelen B. SACRAH: a score for assessment and quantification of chronic rheumatic affections of the hands. Rheumatology (Oxford). 2003;42:1173-8.
69. Ware JE. How to Score the Revised MOS Short-Form Health Scale (SF-36®). Boston, MA: The Health Institute, New England Medical Center Hospitals; 1988.
70. Ware Jr JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30:473-83.
71. Antonovsky A. The structure and properties of the sense of coherence scale. Soc Sci Med. 1993;36:725-33.
72. Suurmeijer TP, Doeglas DM, Briancon S, Krijnen WP, Krol B, Sanderman R, et al. The measurement of social support in the 'European Research on Incapacitating Diseases and Social Support': the development of the Social Support Questionnaire for Transactions (SSQT). Soc Sci Med. 1995;40:1221-9.
73. Sherbourne CD, Stewart AL. The MOS social support survey. Soc Sci Med. 1991;32:705-14.
74. Folkman S, Lazarus RS. If it changes it must be a process: Study of emotion and coping during three stages of a college examination. J Pers Soc Psychol. 1985;48:150-70.
75. Pincus T, Swearingen C, Wolfe F. Toward a multidimensional Health Assessment Questionnaire (MDHAQ): assessment of advanced activities of daily living and psychological status in the patient-friendly health assessment questionnaire format. Arthritis Rheum. 1999;42:2220-30.
76. Sautner J, Andel I, Rintelen B, Leeb BF. Development of the M-SACRAH, a modified, shortened version of SACRAH (Score for the Assessment and Quantification of Chronic Rheumatoid Affections of the Hands). Rheumatology (Oxford). 2004;43:1409-13.
77. Stamm T, Geyh S, Cieza A, Machold K, Kollerits B, Kloppenburg M, et al. Measuring functioning in patients with hand osteoarthritis-content comparison of questionnaires based on the International Classification of Functioning, Disability and Health (ICF). Rheumatology (Oxford). 2006;45:1534-41.
78. Cieza A, Stucki G. Content comparison of health-related quality of life (HRQOL) instruments based on the international classification of functioning, disability and health (ICF). Qual Life Res. 2005;14:1225-37.
79. Folkman S, Lazarus RS. An analysis of coping in a middle-aged community sample. J Health Soc Behav. 1980;21:219-39.
80. WHO. Global Programme on Health Promotion Effectiveness (GPHPE). Accessed on 15.2.2014 under www.who.int/healthpromotion/areas/gphpe/en/ .
81. Brekke M, Hjortdahl P, Kvien TK. Changes in self-efficacy and health status over 5 years: A longitudinal observational study of 306 patients with rheumatoid arthritis. Arthritis Rheum. 2003;49:342-8.
82. van Hoogmoed D, Fransen J, Bleijenberg G, van Riel P. Physical and psychosocial correlates of severe fatigue in rheumatoid arthritis. Rheumatology (Oxford). 2010;49:1294-302.
83. Bartoloni E, Alunno A, Bistoni O, Gerli R. Cardiovascular risk in rheumatoid arthritis and systemic autoimmune rheumatic disorders: A suggested model of preventive strategy. Clin Rev Allergy Immunol. 2013;44:14-22.
84. Hurkmans EJ, van den Berg MH, Ronday KH, Peeters AJ, le Cessie S, Vlieland TP. Maintenance of physical activity after Internet-based physical activity interventions in patients with rheumatoid arthritis. Rheumatology (Oxford). 2010;49:167-72.
85. Avina-Zubieta JA, Thomas J, Sadatsafavi M, Lehman AJ, Lacaille D. Risk of incident cardiovascular events in patients with rheumatoid arthritis: A meta-analysis of observational studies. Ann Rheum Dis. 2012;71:1524-9.
86. Scrivo R, Vasile M, Muller-Ladner U, Neumann E, Valesini G. Rheumatic Diseases and Obesity: Adipocytokines as Potential Comorbidity Biomarkers for Cardiovascular Diseases. Mediators Inflamm. 2013;2013:808125.
87. Combe B, Landewe R, Lukas C, Bolosiu HD, Breedveld F, Dougados M, et al. EULAR recommendations for the management of early arthritis: report of a task force of the European Standing Committee for International Clinical Studies Including Therapeutics (ESCISIT). Ann Rheum Dis. 2007;66:34-45.
88. Petersson C, Simeonsson RJ, Enskar K, Huus K. Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY). Health Qual Life Outcomes. 2013;11:75.
89. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol. 2010;63:737-45.