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Personal factors in systemic sclerosis and their coverage by patient-reported outcome measures : A multicentre European qualitative study and literature review
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- Mattsson, Malin (author)
- Luleå tekniska universitet,Hälsa och rehabilitering,Department of Physiotherapy, Sunderby Hospital, Luleå, SE-971 80, Sweden
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- Boström, Carina (author)
- Karolinska Institutet
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- Mihai, Carina (author)
- Internal Medicine and Rheumatology Department, Cantacuzino Hospital, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
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- Stöcker, Juliane (author)
- Department of Rehabilitation, Nijmegen Centre for Evidence Based Practice, Radboud University Medical Centre, Nijmegen, The Netherlands; Department of Occupational Therapy, HAN University of Applied Sciences, Nijmegen, The Netherlands
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- Geyh, Szilvia (author)
- Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland; Swiss Paraplegic Research, Nottwil, Switzerland
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- Stummvoll, Georg (author)
- Department of Internal Medicine 3, Division of Rheumatology, Medical University of Vienna, Vienna, Austria
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- Gard, Gunvor (author)
- Luleå tekniska universitet,Hälsa och rehabilitering
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- Möller, Bozena (author)
- Department of Rheumatology, Sunderby Hospital, Luleå, Sweden
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- Hesselstrand, Roger (author)
- Department of Rheumatology, Lund University, Lund, Sweden
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- Sandqvist, Gunnel (author)
- Department of Rheumatology, Lund University, Lund, Sweden
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- Draghicescu, Oana (author)
- Internal Medicine and Rheumatology Department, Cantacuzino Hospital, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
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- Gherghe, Ana Maria (author)
- Internal Medicine and Rheumatology Department, Cantacuzino Hospital, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
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- Voicu, Malina (author)
- GESIS Leibniz Institute for the Social Sciences, Cologne, Germany
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- Distler, Oliver (author)
- Division of Rheumatology, University Hospital Zurich, Zurich, Switzerland
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- Smolen, Josef S. (author)
- Department of Internal Medicine 3, Division of Rheumatology, Medical University of Vienna, Vienna, Austria
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- Stamm, Tanja A. (author)
- Department of Internal Medicine 3, Division of Rheumatology, Medical University of Vienna, Vienna, Austria; Division of Occupational Therapy, Department of Health, FH Campus Wien, University of Applied Sciences, Vienna, Austria
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(creator_code:org_t)
- 2015
- 2015
- English.
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In: European Journal of Physical and Rehabilitation Medicine. - 1973-9087 .- 1973-9095. ; 51:4, s. 405-421
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Abstract
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- BACKGROUND: Systemic sclerosis (SSc) is an autoimmune disease where thickening of the skin can lead to reduced body function and limitations in activities. Severe forms can also affect and seriously damage inner organs. Patient-centred rehabilitation emphasises considerations of patients’ background, experience and behavior which highlights the need to know if patient-reported outcome measures (PROMs) include such personal factors.AIM: To identify and describe personal factors in the experiences of functioning and health of persons with SSc and to examine if and to what extent PROMs in SSc research cover these factors.DESIGN: Data from a qualitative study with focus group interviews were analysed. PROMs in SSc research were identified in a literature review between 2008-2013.SETTING: Participants were recruited from outpatient clinics at rheumatology department.POPULATION: Sixty-three patients with SSc from four European countries participated.METHODS: Data from interviews were analysed using a structure of personal factors developed by Geyh et al. Identified PROMs were analysed and linked to main concepts, related to the personal factors, found in the interview data.RESULTS: Nineteen main concepts were related to the area “patterns of experience and behaviour” in the personal factor structure, 16 to “thoughts and beliefs”, nine to “feelings”, one to “motives” and one to “personal history and biography”, respectively. Among the 35 PROMs identified, 15 did not cover any of the identified concepts. Concepts within the area “feelings” were mostly covered by the PROMs. Five of the PROMs covered “patterns of experience and behaviour”, while “motives” and “personal history and biography” were not covered at all. Four of the identified PROMs covered concepts within the areas “feelings”, “thoughts and beliefs” and “patterns of experience and behaviour” in the same instrument. The Illness Cognition Questionnaire and Illness Behaviour Questionnaire were such PROMs.CONCLUSION: Patterns of experience and behaviour had the highest number of concepts related to personal factors, but few of the PROMs in SSc research covered these factors. Only a few PROMs covered several personal factors areas in the same instrument.CLINICAL REHABILITATION IMPACT: The results would be of value when developing core sets for outcome measurements in SSc.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Reumatologi och inflammation (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Rheumatology and Autoimmunity (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Omvårdnad (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
Keyword
- Physiotherapy
- Fysioterapi
Publication and Content Type
- ref (subject category)
- art (subject category)
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- By the author/editor
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Mattsson, Malin
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Boström, Carina
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Mihai, Carina
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Stöcker, Juliane
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Geyh, Szilvia
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Stummvoll, Georg
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Gard, Gunvor
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Möller, Bozena
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Hesselstrand, Ro ...
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Sandqvist, Gunne ...
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Draghicescu, Oan ...
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Gherghe, Ana Mar ...
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Voicu, Malina
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Distler, Oliver
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Smolen, Josef S.
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Stamm, Tanja A.
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- About the subject
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Clinical Medicin ...
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and Rheumatology and ...
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Health Sciences
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and Nursing
- Articles in the publication
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European Journal ...
- By the university
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Luleå University of Technology
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Karolinska Institutet