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Published in: Health and Quality of Life Outcomes 1/2015

Open Access 01-12-2015 | Research

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

Authors: Mona Dür, Michaela Coenen, Michaela Alexandra Stoffer, Veronika Fialka-Moser, Alexandra Kautzky-Willer, Ingvild Kjeken, Răzvan Gabriel Drăgoi, Malin Mattsson, Carina Boström, Josef Smolen, Tanja Alexandra Stamm

Published in: Health and Quality of Life Outcomes | Issue 1/2015

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Abstract

Background

Personal factors (PFs) are internal factors that determine functioning and the individuals’ experience of disability. Their coverage by patient-reported outcome measures (PROMs) has not been examined in rheumatoid arthritis (RA) so far. The aims of this study were to identify PFs important in the life stories of people with RA and to determine their coverage by PROMs used in RA.

Methods

The qualitative data of people with RA was explored to identify PFs. Additionally a systematic literature search was conducted to find PROMs used in RA. PROMs items were linked to the components, domains and categories of the International Classification of Functioning, Disability and Health (ICF) to determine the coverage of important PFs by PROMs.

Results

Twelve PFs were found to be important in the life stories of people with RA. The PFs coping and reflecting about one’s life in an optimistic way were covered most frequently, each by 14 of the 42 explored PROMs, while job satisfaction was not covered at all. The London Coping with Rheumatoid Arthritis Questionnaire, General Self-Efficacy Scale, Arthritis Self-Efficacy Scale, Rheumatoid Arthritis Self-Efficacy Questionnaire and Revised Ways of Coping Inventory covered most PFs. Nineteen PROMs did not cover any of the PFs.

Conclusion

Several PFs were identified as important in the life stories of people with RA, but only 55% of the PROMS covered some of these PFs. When evaluating PFs important to people with RA, health professionals should be alert on which PROMs can be used to assess which PFs.
Literature
1.
go back to reference WHO. The Burden of Musculoskeletal Conditions at the Start of the New Millenium, Technical Report Series,No.919. Geneva: World Health Organization; 2003. WHO. The Burden of Musculoskeletal Conditions at the Start of the New Millenium, Technical Report Series,No.919. Geneva: World Health Organization; 2003.
2.
go back to reference 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.CrossRefPubMedCentralPubMed 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.CrossRefPubMedCentralPubMed
3.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
4.
go back to reference 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.CrossRef 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.CrossRef
5.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
6.
go back to reference WHO. ICF - International Classification of Functioning, Disability and Health. Geneva: World Health Organization; 2001. WHO. ICF - International Classification of Functioning, Disability and Health. Geneva: World Health Organization; 2001.
7.
go back to reference 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. 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.
go back to reference 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.CrossRef 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.CrossRef
9.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
10.
go back to reference Ng L, Khan F. Identification of personal factors in motor neurone disease: a pilot study. Rehabil Res Pract. 2011;2011:7. Ng L, Khan F. Identification of personal factors in motor neurone disease: a pilot study. Rehabil Res Pract. 2011;2011:7.
11.
go back to reference 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. 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.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
13.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
14.
go back to reference 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.CrossRefPubMedCentralPubMed 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.CrossRefPubMedCentralPubMed
15.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
16.
go back to reference Ahlstrand I, Bjork M, Thyberg I, Borsbo B, Falkmer T. Pain and daily activities in rheumatoid arthritis. Disabil Rehabil. 2012;34:1245–53.CrossRefPubMed Ahlstrand I, Bjork M, Thyberg I, Borsbo B, Falkmer T. Pain and daily activities in rheumatoid arthritis. Disabil Rehabil. 2012;34:1245–53.CrossRefPubMed
17.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
18.
go back to reference 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.CrossRefPubMedCentralPubMed 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.CrossRefPubMedCentralPubMed
19.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
20.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
21.
go back to reference Lazarus RS, Folkman S. Stress, Appraisal, and Coping. New York: Springer; 1984. Lazarus RS, Folkman S. Stress, Appraisal, and Coping. New York: Springer; 1984.
23.
go back to reference 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.CrossRef 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.CrossRef
24.
go back to reference Woolf AD, Erwin J, March L. The need to address the burden of musculoskeletal conditions. Best Pract Res Clin Rheumatol. 2012;26:183–224.CrossRefPubMed Woolf AD, Erwin J, March L. The need to address the burden of musculoskeletal conditions. Best Pract Res Clin Rheumatol. 2012;26:183–224.CrossRefPubMed
25.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
26.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
27.
go back to reference 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.CrossRefPubMedCentralPubMed 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.CrossRefPubMedCentralPubMed
28.
go back to reference 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.CrossRefPubMedCentralPubMed 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.CrossRefPubMedCentralPubMed
29.
go back to reference 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. 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.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
31.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
32.
go back to reference Jones K. The turn to a narrative knowing of persons: One method explored. Nurs Time Res. 2002;1:1–11. Jones K. The turn to a narrative knowing of persons: One method explored. Nurs Time Res. 2002;1:1–11.
33.
go back to reference Wengraf T. Qualitative Research Interviewing: Biographic Narratives and Semi-Structured Methods. London: Sage Publications; 2001.CrossRef Wengraf T. Qualitative Research Interviewing: Biographic Narratives and Semi-Structured Methods. London: Sage Publications; 2001.CrossRef
34.
go back to reference 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. 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.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
36.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
37.
go back to reference 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.CrossRef 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.CrossRef
38.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
39.
go back to reference 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.CrossRef 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.CrossRef
40.
go back to reference 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.CrossRef 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.CrossRef
41.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
42.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
43.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
44.
go back to reference 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.PubMed 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.PubMed
45.
go back to reference Rabin R, de Charro F. EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001;33:337–43.CrossRefPubMed Rabin R, de Charro F. EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001;33:337–43.CrossRefPubMed
46.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
47.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
48.
go back to reference 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. 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.
go back to reference Schwarzer R. Measurement of Perceived Self-Efficacy: Psychometric Scales for Cross-Cultural Research. Berlin: Freie Universität Berlin, Institut für Psychologie; 1993. Schwarzer R. Measurement of Perceived Self-Efficacy: Psychometric Scales for Cross-Cultural Research. Berlin: Freie Universität Berlin, Institut für Psychologie; 1993.
50.
go back to reference Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.CrossRefPubMed Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.CrossRefPubMed
51.
go back to reference Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arthritis Rheum. 1980;23:137–45.CrossRefPubMed Fries JF, Spitz P, Kraines RG, Holman HR. Measurement of patient outcome in arthritis. Arthritis Rheum. 1980;23:137–45.CrossRefPubMed
52.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
53.
go back to reference 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.PubMed 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.PubMed
54.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
55.
go back to reference Newman S, Fitzpatrick R, Lamb R, Shipley M. Patterns of Coping in Rheumatoid Arthritis. Psychol Health. 1990;4:187–200.CrossRef Newman S, Fitzpatrick R, Lamb R, Shipley M. Patterns of Coping in Rheumatoid Arthritis. Psychol Health. 1990;4:187–200.CrossRef
56.
go back to reference Scheier MF, Carver CS. Optimism, coping, and health: assessment and implications of generalized outcome expectancies. Health Psychol. 1985;4:219–47.CrossRefPubMed Scheier MF, Carver CS. Optimism, coping, and health: assessment and implications of generalized outcome expectancies. Health Psychol. 1985;4:219–47.CrossRefPubMed
57.
go back to reference Tack B. Dimensions and correlates of fatigue in older adults with rheumatoid arthritis. San Francisco: University of California; 1991. Tack B. Dimensions and correlates of fatigue in older adults with rheumatoid arthritis. San Francisco: University of California; 1991.
58.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
59.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
60.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
61.
go back to reference 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.CrossRefPubMedCentralPubMed 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.CrossRefPubMedCentralPubMed
62.
go back to reference 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.PubMed 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.PubMed
63.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
64.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
65.
go back to reference Whalley D, McKenna SP, de Jong Z, van der Heijde D. Quality of life in rheumatoid arthritis. Br J Rheumatol. 1997;36:884–8.CrossRefPubMed Whalley D, McKenna SP, de Jong Z, van der Heijde D. Quality of life in rheumatoid arthritis. Br J Rheumatol. 1997;36:884–8.CrossRefPubMed
66.
go back to reference 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.PubMed 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.PubMed
67.
go back to reference 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.CrossRef 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.CrossRef
68.
go back to reference 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.CrossRef 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.CrossRef
69.
go back to reference 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. 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.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
71.
go back to reference Antonovsky A. The structure and properties of the sense of coherence scale. Soc Sci Med. 1993;36:725–33.CrossRefPubMed Antonovsky A. The structure and properties of the sense of coherence scale. Soc Sci Med. 1993;36:725–33.CrossRefPubMed
72.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
73.
74.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
75.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
76.
go back to reference 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.CrossRef 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.CrossRef
77.
go back to reference 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.CrossRef 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.CrossRef
78.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
79.
go back to reference Folkman S, Lazarus RS. An analysis of coping in a middle-aged community sample. J Health Soc Behav. 1980;21:219–39.CrossRefPubMed Folkman S, Lazarus RS. An analysis of coping in a middle-aged community sample. J Health Soc Behav. 1980;21:219–39.CrossRefPubMed
81.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
82.
go back to reference 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.CrossRef 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.CrossRef
83.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
84.
go back to reference 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.CrossRef 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.CrossRef
85.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
86.
go back to reference 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.CrossRefPubMedCentralPubMed 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.CrossRefPubMedCentralPubMed
87.
go back to reference 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.CrossRefPubMedCentralPubMed 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.CrossRefPubMedCentralPubMed
88.
go back to reference 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.CrossRefPubMedCentralPubMed 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.CrossRefPubMedCentralPubMed
89.
go back to reference 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.CrossRefPubMed 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.CrossRefPubMed
Metadata
Title
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
Authors
Mona Dür
Michaela Coenen
Michaela Alexandra Stoffer
Veronika Fialka-Moser
Alexandra Kautzky-Willer
Ingvild Kjeken
Răzvan Gabriel Drăgoi
Malin Mattsson
Carina Boström
Josef Smolen
Tanja Alexandra Stamm
Publication date
01-12-2015
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2015
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-015-0214-8

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