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- Mattsson, Malin, et al.
(författare)
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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
- 2015
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Ingår i: European Journal of Physical and Rehabilitation Medicine. - 1973-9087 .- 1973-9095. ; 51:4, s. 405-421
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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- Mattsson, Malin, et al.
(författare)
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Reliability and validity of the Fatigue Severity Scale in Swedish for patients with systemic lupus erythematosus
- 2008
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Ingår i: Scandinavian Journal of Rheumatology. - : Informa UK Limited. - 0300-9742 .- 1502-7732. ; 37:4, s. 269-277
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The aim was to translate, test, and describe aspects of reliability and validity of the Fatigue Severity Scale (FSS) in Swedish (FSS-Swe) in patients with systemic lupus erythematosus (SLE). Methods: Patients with stable SLE, low or moderate disease activity, and low organ damage were included. Forward and back translations of the FSS were performed. Construct validity was tested with 32 women using a first Swedish translation. Feasibility, ceiling and floor effects, internal consistency, test-retest reliability, and content validity were tested on a slightly modified final version of the FSS-Swe in a non-selected group of patients (n=23). Results: There were correlations (p≤0.05) between the FSS-Swe and overall disease activity according to the Systemic Lupus Activity Measure (SLAM) (rs=0.48) and the SLAM Visual Analogue Scale (SLAM-VAS) (rs=0.46); between the FSS-Swe and eight subscales of the Swedish 36-Item Medical Outcomes Study Short-Form Health Survey (SF-36) (rs=-0.41 to -0.65) and between the FSS-Swe and age (rs=-0.35). All patients answered all FSS-Swe questions at both test and retest. There was one ceiling effect in one question on one occasion. The Kolmogorov-Smirnov test indicated normal distribution. Cronbach's alpha was 0.94 and corrected item-to-total correlation exceeded 0.3. There were no significant systematic test-retest differences, and the median-weighted kappa coefficient was 0.75. Twenty patients understood the questions in FSS-Swe, 18 considered they were relevant, reflected their fatigue, and that none should be excluded. Five items were suggested to be included. Conclusions: The FSS-Swe supports construct validity, is feasible, has no important ceiling or floor effects, has satisfactory internal consistency, substantial test-retest reliability, and satisfactory content validity in the SLE patients studied. However, its sensitivity to change needs to be tested.
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- Mattsson, Malin, et al.
(författare)
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Uncertainty and opportunities in patients with established eystemic Lupus Erythematosus : A qualitative study
- 2012
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Ingår i: Musculoskeletal Care. - : Wiley. - 1478-2189 .- 1557-0681. ; 10:1, s. 1-12
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Tidskriftsartikel (refereegranskat)abstract
- Systemic lupus erythematosus (SLE) is a chronic disease which can affect any organ, and the impact of the condition will affect each person differently. There are few qualitative studies including the experiences of both women and men with a diagnosis of SLE corresponding to the American College of Rheumatology (ACR) criteria where both negative and positive impacts of the disease have been presented. Purpose: The aim was to describe how patients with established SLE experience their illness in everyday life, including both negative and positive aspects. Method: Four focus group interviews were conducted with 16 women and three men with SLE according to ACR criteria, with varied disease activity and no or little organ damage. The interviews were tape recorded, transcribed verbatim and analysed using qualitative content analysis. Results: Two themes emerged: multifaceted uncertainty contained the categories 'an unreliable body', 'obtrusive pain and incomprehensible fatigue', 'mood changes and worries', 'reliance on medication and health care'; Focus on health and opportunities included 'learning process implying personal strength', 'limitations and possibilities in activities and work', 'a challenge to explain and receive support' and 'living an ordinary life incorporating meaningful occupations'. Conclusions: While we expected to find a mainly negative impact, positive aspects were also described. Our findings were complex and showed that patients with established SLE can experience both uncertainty and opportunities. This highlights the importance for healthcare professionals of gaining a better understanding of patients' uncertainty, to enable them to support patients, allowing them to focus on health and opportunities. Measurement instruments that capture different aspects of uncertainty and opportunities needs to be developed.
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- Stamm, Tanja A., et al.
(författare)
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Concepts of functioning and health important to people with systemic sclerosis : a qualitative study in four European countries
- 2011
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Ingår i: Annals of the Rheumatic Diseases. - : BMJ. - 0003-4967 .- 1468-2060. ; 70:6, s. 1074-1079
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Tidskriftsartikel (refereegranskat)abstract
- Objective To describe the experiences of people with systemic sclerosis (SSc) in different European countries of functioning and health and to link these experiences to the WHO International Classification of Functioning, Disability and Health (ICF) to develop a common understanding from a bio-psycho-social perspective. Method A qualitative multicentre study with focus-group interviews was performed in four European countries: Austria, Romania, Sweden and Switzerland. The qualitative data analysis followed a modified form of 'meaning condensation' and the concepts that emerged in the analysis were linked to the ICF. Results 63 people with SSc participated in 13 focus groups. In total, 86 concepts were identified. 32 (37%) of these were linked to the ICF component body functions and structures, 21 (24%) to activities and participation, 26 (30%) to environmental factors, 6 (7%) to personal factors and 1 (1%) to the health condition itself. 19 concepts (22%) were identified in all four countries and included impaired hand function, household activities, paid work, drugs, climate and coldness, support from others and experiences with healthcare institutions, non-pharmacological treatment, social security and benefits. Conclusion Concepts identified in all four countries could be used for guiding clinical assessment, as well as interdisciplinary team care and rheumatological rehabilitation for patients with SSc. For a full understanding of the aspects of the disease that were most relevant to people with SSc, people with SSc from multiple countries needed to be involved.
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