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  • 1.
    Dür, Mona
    et al.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Coenen, Michaela
    Ludwig-Maximilians-University, Department of Medical Informatics, Biometry and Epidemiology, Research Unit for Bio Psychosocial Health, Marchioninistraße 17, 81377, Munich.
    Fialka-Moser, Veronika
    Medical University of Vienna, Department of Physical Medicine and Rehabilitation.
    Kautzky-Willer, Alexandra
    Medical University of Vienna, Department of Internal Medicine III, Division of Diabetology, Medical University of Vienna.
    Mattsson, Malin
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Boström, Carina
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Stamm, Tanja A.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
     Personal Factors Important to People with Rheumatoid Arthritis and their Coverage by Patient-Reported Outcome Measures2015In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 73, no Suppl. 2, p. 894-Article in journal (Other academic)
    Abstract [en]

    Background There is an increasing call to use patient reported outcome measures (PROMs) in health outcome research, because the perspective of patients is an essential part concerning the end results of health care. The coverage of patients' perspective by PROMs relevant in rheumatoid arthritis (RA) has been examined regarding all domains of the International Classification of Functioning, Disability and Health (ICF) except personal factors (PFs). Since the ICF did not classify PF, some researchers attempted to provide a classification of the PFs. Objectives We aimed to identify themes meaningful to people with RA, to determine which of these were attributed to PFs previously and to explore their coverage by PROMs. Methods We explored life stories to identify themes meaningful to people with RA and determined whether they have been previously attributed to PFs in the existing literature. Additionally we conducted a systematic literature search to identify PROMs relevant in RA. Finally, we explored whether the identified PROMs cover those themes which were attributed PFs previously. Results Twenty-two themes were found to be meaningful to 15 people with RA, of which 13 were attributed to PFs previously. Five themes were linked to activity and participation or environmental factors and four were not covered by the ICF. The systematic literature search resulted in the identification of 33 PROMs. Of these, the London Coping with Rheumatoid Arthritis Questionnaire and the Rheumatoid Arthritis Self-Efficacy Questionnaire covered most PFs. Examples of the coverage of themes attributed to PFs by PROMs are depicted at the Table 1.

  • 2.
    Dür, Mona
    et al.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Coenen, Michaela
    Ludwig-Maximilians-University, Department of Medical Informatics, Biometry and Epidemiology, Research Unit for Bio Psychosocial Health, Marchioninistraße 17, 81377, Munich.
    Stoffer, Michaela Alexandra
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Fialka-Moser, Veronika
    Medical University of Vienna, Department of Physical Medicine and Rehabilitation.
    Kautzky-Willer, Alexandra
    Medical University of Vienna, Department of Internal Medicine III, Division of Diabetology.
    Kjeken, Ingvild
    Diakonhjemmet Hospital, National Advisory Unit on Rehabilitation in Rheumatology, Department of Rheumatology, Postbox 23 Vinderen.
    Drăgoi, Răzvan Gabriel
    “Victor Babeş” University of Medicine and Pharmacy, Department of Rehabilitation, Physical Medicine and Rheumatology, Piata Eftimie Murgu 2, Timişoara.
    Mattsson, Malin
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Boström, Carina
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Smolen, Josef S.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Stamm, Tanja A.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    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 reference2015In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 13, article id 27Article in journal (Refereed)
    Abstract [en]

    BackgroundPersonal 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.MethodsThe 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.ResultsTwelve 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.ConclusionSeveral 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.

  • 3.
    Mattsson, Malin
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Frågeformulär och patientupplevelser vid systemisk lupus erythematosus: en metodstudie och en kvalitativ studie2011Licentiate thesis, comprehensive summary (Other academic)
    Abstract [sv]

    Systemisk lupus erythematosus (SLE) är en reumatisk systemsjukdom som kan leda till en varierande sjukdomsbild beroende på sjukdomsaktivitet och vilket/vilka organ som är drabbade. Kvinnor drabbas i större utsträckning än män, 9:1. Trötthet är mycket vanligt och förekommer även vid mild och inaktiv sjukdom. Av denna anledning är det särskilt viktigt att mäta och behandla denna trötthet. För att förstå hur patienter med SLE påverkas i vardagen behövs kvalitativ forskning. Inom ramen för kvalitativ forskning har en stor variation av negativa konsekvenser av sjukdomen beskrivits och i några få studier har även positiva aspekter framkommit. Den internationella klassifikation av funktionstillstånd, funktionshinder och hälsa som är ett ramverk inom rehabilitering, täcker både negativa och positiva aspekter av funktion och hälsa. Syftet med denna licentiatavhandling är att översätta och testa reliabilitet och validitet av frågeformuläret Fatigue Severity Scale (FSS) för patienter med SLE samt att beskriva och utöka kunskapen om patientupplevelser av sjukdomen.En metodstudie utfördes där FSS, som mäter trötthet vid SLE, översattes till svenska, FSS-Swe, samt utvecklades och testades för begreppsvaliditet, tak- och golveffekter, intern konsistens, test-retest reliabilitet och innehållsvaliditet. Begreppsvaliditet testades på 32 kvinnor med SLE. Tak- och golveffekter, intern konsistens, test- retest reliabilitet och innehållsvaliditet testades på 23 patienter. Resultatet visade stöd för begreppsvaliditet, hade inga betydande tak- och golveffekter, tillfredsställande intern konsistens, god test-retest reliabilitet och tillfredställande innehållsvaliditet hos patienter med ingen till måttlig sjukdomsaktivitet och ingen eller liten organskada. En kvalitativ fokusgruppintervjustudie utfördes med syftet att beskriva hur patienter med etablerad SLE upplever sin sjukdom med fokus på det dagliga livet, omfattande både negativa och positiva aspekter. Sexton kvinnor och tre män med varierande grad av sjukdomsaktivitet och ingen eller liten organskada deltog i fokusgruppintervjuer, med fyra till fem informanter i varje fokusgrupp. Intervjuerna spelades in på ljudband, transkriberades och analyserades med latent innehållsanalys. Analysen resulterade i två teman: Mångfacetterad osäkerhet som bestod av kategorierna: en opålitlig kropp, störande smärta och svårförståelig trötthet, förändrat stämningsläge och oro, beroende av mediciner och sjukvård. Fokus på hälsa och möjligheter innefattade kategorierna: lärandeprocess med utvecklande av personlig styrka, begränsningar och möjligheter i aktiviteter och arbete, utmaning att förklara sjukdomen och få stöd, leva ett vanligt liv med meningsfull sysselsättning. Sammanfattningsvis visar resultatet från metodstudien att FSS-Swe är ett lämpligt frågeformulär för mätning av trötthet hos patienter med SLE hos patienter med ingen till måttlig sjukdomsaktivitet och ingen eller liten organskada. Resultatet från den kvalitativa studien gav värdefull kunskap som kan användas för att utveckla rehabilitering vid SLE. Resultatet visar att patienter med etablerad SLE med ingen eller liten organskada kan uppleva både osäkerhet och möjligheter i sitt dagliga liv. Det är viktigt att sjukvårdspersonal förstår och beaktar patienters upplevelser av osäkerhet för att kunna ge stöd i att fokusera på hälsa och möjligheter. Multidimensionella mätinstrument som fångar patienters osäkerhet och olika möjligheter i det dagliga livet behöver utvecklas.

  • 4.
    Mattsson, Malin
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Patients’ experiences and patient-reported outcome measures in systemic lupus erythematosus and systemic sclerosis2014Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The overall aim of this thesis was to describe experiences of persons with systemic lupus erythematosus (SLE) and systemic sclerosis (SSc), with a focus on functioningand health, and to evaluate patient reported outcome measures (PROMs).Methods The Fatigue Severity Scale (FSS), measuring fatigue and its consequences in SLE, was translated into Swedish and tested for aspects of reliability and validity (study I). In order to understand fatigue in its context, persons with SLE described their experiences of illness in everyday life. Focus group interviews were conducted and analysed using qualitative content analysis (study II). Experiences of functioning and health in persons with SSc in different European countries were described in order to obtain a biopsychosocial understanding. A multi-centre study with focus group interviews of persons with SSc in four different countries was conducted. The data was analysed with modified meaning condensation, resulting in concepts that were linkedto the International Classification of Functioning, Disability, and Health (ICF) (studyIII). To deepen the understanding of personal factors in the experiences of functioning and health in SSc, the concepts from Study III were re-analysed using Geyh et al’s personal factor structure. Further, PROMs in SSc research were identified in a literature review, and whether and to what extent they included the personal factors found was analysed (study IV).Results No important ceiling or floor effects, substantial test-retest reliability,satisfactory internal consistency and content validity, and support for construct validity for the Swedish version of the FSS were found (study I). Two themes described experiences of illness in everyday life in persons with SLE: i) Multifaceted uncertainty including an unreliable body; obtrusive pain and incomprehensible fatigue; reliance on medication and health care; mood changes and worries and ii) Focus on health and opportunities including a 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 (study II). Concepts identified in common for persons with SSc in all four European countries involved the ICF-components body function and structure, activities and participation, and environmental and personal factors. Most concepts were linked to body functions and structures followed by environmental factors. Most concepts, in common in all fourcountries, within body function and structure and activity and participation were inline with suggested domains to be measured in SSc. Environmental factors, incommon in all four countries, involved experiences such as too much heat and cold, support from significant others, healthcare, drugs and side effects, nonpharmacological treatment and social security system. Personal factors, found in all four countries, involved struggle to master one’s life with the disease, such as unclear future, change of expectations and positive experience of the disease, being in control, being strong owing to having mastered the disease (study III). Using the personal factor structure, 19 concepts related to Patterns of experience and behaviour, 16 to Thoughts and beliefs, nine to Feelings, one to Motives, and one to Personal history and Biography were found. Thirty-five PROMs in SSc research were identified, and 43% did not cover any personal factor concepts. The PROMs most frequently covered feelings (51%); less covered were patterns of experience and behaviour (14%), and the identified PROMs did not cover motives and personal history and biography (study IV).Implications and conclusions The FSS in Swedish is reliable and valid for measuring fatigue and its consequences in persons with SLE with no-moderate disease activity and no or low organ damage. However, the results also indicate that measuring fatigue is complex and more aspects of its validity such as sensitivity to change have to be studied. Multifaceted uncertainty and focus on health and opportunities were experienced among persons with SLE. Aspects of uncertainty and opportunities were also experienced in SSc. The findings are in line with theories focusing on uncertainty in illness and personal growth following adversity. This highlights the importance for healthcare professionals to identify and understand patients’ experiences of uncertainty to support focus on health and opportunities in patients with SLE and SSc. PROMs that capture uncertainty and opportunities needs to be developed. The experiences of functioning and health in SSc, found in all four European countries, may be used to guide clinical assessment and the development of an outcome measurement core set inSSc. For a full understanding of the aspects of the disease that are most relevant to people with SSc, people with SSc from different part of the world needs to beinvolved. The personal factor structure used was supportive to identify, organise, and deeper understand personal factors in SSc. Almost half of the PROMs in SSc research, including provisional and proposed PROMs, did not cover any of the personal factors found, which highlights the importance of further developing PROMs that covers personal factors in SSc. To increase the knowledge of the role of personal factors, PROMs that cover personal factors found such as personal history and biography, feelings, thoughts and beliefs, motives, and patterns of experience and behaviour ought to be considered in clinical practice and SSc research. In person-centred care, health professionals need to recognise environmental and personal factors in those with SLE and SSc to tailor individual interventions.

  • 5.
    Mattsson, Malin
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Boström, Carina
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Mihai, Carina
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Stocker, Juliane
    Department of Rehabilitation, Nijmegen Centre for Evidence Based Practice, Radboud University Medical Centre, Nijmegen.
    Geyh, Szilvia
    Department of Health Sciences and Health Policy, University of Lucerne.
    Stummvoll, Georg
    Department of Internal Medicine 3, Division of Rheumatology, Medical University of Vienna.
    Gard, Gunvor
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Möller, Bozena
    Sunderby sjukhus, Luleå, Department of Rheumatology, Sunderby Hospital.
    Hesselstrand, Roger
    Department of Rheumatology, Lund University.
    Sandqvist, Gunnel
    Department of Rheumatology, Lund University.
    Draghicescu, Oana
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Gherghe, Ana Maria
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Voicu, Malina
    Research Institute for Quality of Life, Romanian Academy of Science, Bucharest.
    Distler, Oliver
    Department of Rheumatology and Institute for Physical Medicine, University Hospital Zurich.
    Smolen, Josef S.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Stamm, Tanja A.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Personal factors in systemic sclerosis and their coverage by patient-reported outcome measures: A multicentre European qualitative study and literature review2015In: European Journal of Physical and Rehabilitation Medicine, ISSN 1973-9087, E-ISSN 1973-9095, Vol. 51, no 4, p. 405-421Article in journal (Refereed)
    Abstract [en]

    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 behaviour which highlights the need to know if patient--reported outcome measures (PROMs) include such personal factors.AIMS: 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 AND POPULATION: Data from a qualitative study with focus group interviews in patients with SSc were analysed and PROMs in SSc--research were identified in a literature review between 2008--2013.SETTING: Outpatient clinics at rheumatology department in four European countries.METHODS: Data from interviews with 63 participants 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 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 of "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 some PROMs covered several personal factors areas in the same instrument.CLINICAL REHABILITATION IMPACT: The results would be of value when developing a core set for outcome measurements in SSc.

  • 6.
    Mattsson, Malin
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Möller, Bozena
    Sunderby sjukhus, Luleå, Department of Rheumatology, Sunderby Hospital.
    Hesselstrand, Roger
    Department of Rheumatology, Lund University.
    Sandqvist, Gunnel
    Department of Rheumatology, Lund University.
    Gard, Gunvor
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Smolen, Josef S.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Bauernfeind, Bettina
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Stamm, Tanja A.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Boström, C.
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Focus groups in international multi-centre qualitative studies2009Conference paper (Refereed)
  • 7.
    Mattsson, Malin
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Möller, Bozena
    Sunderby sjukhus, Luleå.
    Lundberg, I.E.
    Department of Rheumatology Unit, Department of Medicine, Karolinska University Hospital.
    Gard, Gunvor
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Boström, C.
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet.
    Reliability and validity of the Fatigue Severity Scale in Swedish for patients with systemic lupus erythematosus2008In: Scandinavian Journal of Rheumatology, ISSN 0300-9742, E-ISSN 1502-7732, Vol. 37, no 4, p. 269-277Article in journal (Refereed)
    Abstract [en]

    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.

  • 8.
    Mattsson, Malin
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Möller, Bozena
    Department of Rheumatology, Sunderby Hospital.
    Stamm, T.
    Division of Rheumatology, Department of Internal Medicine III Medical University of Vienna and Division of Occupational Therapy, Department of Health, University of Applied Sciences - FH Campus Wien.
    Gard, Gunvor
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Boström, C.
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Uncertainty and opportunities in patients with established eystemic Lupus Erythematosus: A qualitative study2012In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 10, no 1, p. 1-12Article in journal (Refereed)
    Abstract [en]

    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.

  • 9.
    Mattsson, Malin
    et al.
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Möller, Bozena
    Sunderby sjukhus, Luleå, Department of Rheumatology, Sunderby Hospital.
    Stamm, Tanja A.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Gard, Gunvor
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Boström, C.
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet.
    Uncertainties and opportunities for patients with SLE2015In: Clinical and Experimental Rheumatology, ISSN 0392-856X, E-ISSN 1593-098X, Vol. 33, no 3, p. S5-Article in journal (Other academic)
  • 10.
    Stamm, Tanja A.
    et al.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Mattsson, Malin
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Mihai, Carina
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Stöcker, Juliane
    Department of Rheumatology and Institute for Physical Medicine, University Hospital Zurich.
    Binder, Alexia
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Bauernfeind, Bettina
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Stumvoll, Georg
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Gard, Gunvor
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Hesselstrand, Roger
    Department of Rheumatology, Lund University.
    Sandqvist, Gunnel
    Department of Rheumatology, Lund University.
    Draghicescu, Oana
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Gherghe, Ana Maria
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Voicu, Malina
    Research Institute for Quality of Life, Romanian Academy of Science, Bucharest.
    Machold, Klaus P.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Distler, Oliver
    Department of Rheumatology and Institute for Physical Medicine, University Hospital Zurich.
    Smolen, Josef S.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Boström, Carina
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet.
    Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries2011Conference paper (Refereed)
    Abstract [en]

    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.

  • 11.
    Stamm, Tanja A.
    et al.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Mattsson, Malin
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Mihai, Carina
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Stöcker, Juliane
    Department of Rheumatology and Institute for Physical Medicine, University Hospital Zurich.
    Binder, Alexia
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Bauernfeind, Bettina
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Stumvoll, Georg
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Gard, Gunvor
    Luleå University of Technology, Department of Health Sciences, Health and Rehab.
    Hesselstrand, Roger
    Department of Rheumatology, Lund University.
    Sandqvist, Gunnel
    Department of Rheumatology, Lund University.
    Draghicescu, Oana
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Gherghe, Ana Maria
    Internal Medicine and Rheumatology Department, Carol Davila University of Medicine and Pharmacy, Cantacuzino Hospital, Bucharest.
    Voicu, Malina
    Research Institute for Quality of Life, Romanian Academy of Science, Bucharest.
    Machold, Klaus P.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Distler, Oliver
    Department of Rheumatology and Institute for Physical Medicine, University Hospital Zurich.
    Smolen, Josef S.
    Department of Internal Medicine III, Division of Rheumatology, Medical University of Vienna.
    Boström, Carina
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet.
    Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries2011In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 70, no 6, p. 1074-1079Article in journal (Refereed)
    Abstract [en]

    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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