| 1. |
- Mattsson, M., et al.
(författare)
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Personal factors in systemic sclerosis and their coverage by patient-reported outcome measures
- 2015
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Ingår i: European Journal of Physical and Rehabilitation Medicine. - 1827-1804. ; 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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| 2. |
- Geyh, S, et al.
(författare)
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Content comparison of health-related quality of life measures used in stroke based on the international classification of functioning, disability and health (ICF): a systematic review.
- 2007
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Ingår i: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. - : Springer Science and Business Media LLC. - 0962-9343. ; 16:5, s. 833-51
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To examine and compare the contents of health-related quality of life (HRQoL) measures used in stroke, based on the ICF as the frame of reference. DESIGN: We conducted a systematic literature review to select current generic and condition-specific HRQoL measures applied in stroke. We examined the contents of the selected measures by linking the concepts within the instruments' items to the ICF. RESULTS: The systematic literature review resulted in the selection of six generic and seven stroke-specific HRQoL measures. Within the selected instruments we identified 979 concepts. To map these concepts, we used 200 different ICF categories. None of the ICF categories is contained in all of the instruments. The most frequently used category is 'b152 Emotional functions' contained in 53 items from 10 instruments. Stroke-specific measures more often address 'Mental functions', while the selected generic instruments more often include Environmental Factors. DISCUSSION: The present study provides an overview on current HRQoL measures in stroke with respect to their covered contents and provides valuable information to facilitate the selection of appropriate instruments for specific purposes in clinical as well as research settings.
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| 3. |
- 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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