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  • 1.
    Ahlstrand, Inger
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Vaz, Sharmila
    School of Occupational Therapy & Social Work, CHIRI, Curtin University, Perth, WA, Australia.
    Falkmer, Torbjörn
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. CHILD. Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
    Thyberg, Ingrid
    Department of Rheumatology and Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden.
    Björk, Mathilda
    Department of Rheumatology and Department of Social and Welfare Studies, Linköping University, Norrköping, Sweden.
    Self-efficacy and pain acceptance as mediators of the relationship between pain and performance of valued life activities in women and men with rheumatoid arthritis2017In: Clinical Rehabilitation, ISSN 0269-2155, E-ISSN 1477-0873, Vol. 31, no 6, p. 824-834Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To study whether personal factors (self-efficacy and pain acceptance) mediate the relationship between pain and performance of valued life activities in persons with rheumatoid arthritis.

    METHODS: Persons with rheumatoid arthritis for at least four years (n = 737; 73% women) answered a questionnaire measuring self-efficacy, pain acceptance, performance of valued life activities, and self-rated pain. Relationships among these constructs were explored using univariate and multivariate analyses. Structural equation modelling was then used to examine the mediational role of personal factors on the relationship between pain and performance of valued life activities.

    RESULTS: A direct negative association between pain and performance of valued life activities was identified (Beta = .34, P < .001). This suggests that people with rheumatoid arthritis who had higher levels of pain has increased difficulties in performing valued life activities. Self-efficacy and activity engagement component of pain acceptance mediated the relationship between pain and performance of valued life activities, however the pain willingness component of pain acceptance did not influence participation in valued life activities.

    CONCLUSION: These findings highlight the importance of considering personal factors, such as pain acceptance and self-efficacy, in facilitating participation in valued life activities.

  • 2.
    Ahlstrand, Inger
    et al.
    Jönköping University, School of Health and Welfare, HHJ. ADULT. Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation.
    Wagman, Petra
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Hakansson, C.
    Lund Univ, Div Occupat & Environm Med, Lund, Sweden.
    Bjork, M.
    Linkoping Univ, Dept Rheumatol, Linkoping, Sweden.
    Occupational balance and its relation to performance of valued life activities in persons with rheumatoid arthritis in working age2018In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 77, no Suppl. 2, p. 186-186Article in journal (Refereed)
    Abstract [en]

    Background Experience of balance in everyday activities where work is an essential part is important to health and well-being, as has also been observed in previous studies in people with rheumatoid arthritis (RA). The Valued life activity scale (VLA-swe) is a questionnaire in which patient’s first report if the separate activities are valued or not to perform and secondly difficulties to perform these activities. Occupational Balance Questionnaire (OBQ) focuses on satisfaction with the amount and variation of occupations.

    Objectives The objectives were to 1) describe the relationship between performance of valued activities and experienced occupational balance, and to 2) identify aspects associated with low occupational balance in persons with RA.

    Methods 368 persons (age 18–65 years, 77% women) with RA responded to a questionnaire measuring occupational balance (OBQ) and performance of valued life activities (VLA-swe). Other aspects of interest were activity limitations measured by Health Assessment Questionnaire (HAQ), pain (measured by VAS), continuous stress (stressed continuously for more than a month during the last 12 months), children at home, education, and living situation. The relation between OBQ and performance in VLA across genders and Workers/Non-workers were analysed using non-parametric correlation analyses. To identify the impact of different aspects on the likelihood that participants would report lower occupational balance, OBQ was analysed using workers/nonworkers, stress, gender, age, pain and difficulties performing valued activities as independent variables in logistic regressions models. The study was approved by the Regional Ethics Committee (Dnr2011/452–31).

    Results The OBQ was significantly related to difficulties to perform valued activities reported by VLA (r=-0.41, p<0.001). Having more difficulties performing valued activities was the strongest predictor of lower occupation balance and increased the risk of reporting lower occupation balance with nearly five times (OR=4.54, p 0.001). Continuous stress increased the risk of having lower occupation balance more than three times (OR=3.27, p<0.0001) than those who not reported being stressed. The other variables show no significant impact on the likelihood that the participants would report lower occupational balance.

    Conclusions The results showed support for the relationship between occupation balance and performance of valued life activities and highlights to identify what’s important for the individual and to assume that in the rehabilitation. The results also show the importance of ability to manage stress, in order to enable for retaining ability to work and achieve high occupational balance.

  • 3.
    Bala, Sidona-Valentina
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Forslind, Kristina
    Section of Rheumatology, Department of Medicine, Helsingborg Hospital, Helsingborg, Sweden.
    Fridlund, Bengt
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Hagell, Peter
    The PRO-CARE Group, School of Health & Society, Kristianstad University, Kristianstad, Sweden.
    Measuring person-centred care in nurse-led outpatient rheumatology clinics2018In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 16, no 2, p. 296-304Article in journal (Refereed)
    Abstract [en]

    Background: Measurement of person-centred care (PCC) outcomes is underdeveloped owing to the complexity of the concept and lack of conceptual clarity. A framework conceptualizing outpatient PCC in rheumatology nurse-led clinics has therefore been suggested and operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum).

    Objective: The aim of the present study was to test the extent to which the PCCoc/rheum represents the underpinning conceptual outpatient PCC framework, and to assess its measurement properties as applied in nurse-led outpatient rheumatology clinics.

    Methods: The 24-item PCCoc/rheum was administered to 343 persons with rheumatoid arthritis from six nurse-led outpatient rheumatology clinics. Its measurement properties were tested by Rasch measurement theory.

    Results: Ninety-two per cent of individuals (n = 316) answered the PCCoc/rheum. Items successfully operationalized a quantitative continuum from lower to higher degrees of perceived PCC. Model fit was generally good, including lack of differential item functioning (DIF), and the PCCoc/rheum was able to separate individuals with a reliability of 0.88. The four response categories worked as intended, with the exception of one item. Item ordering provided general empirical support of a priori expectations, with the exception of three items that were omitted owing to multidimensionality, dysfunctional response categories and unexpected ordering. The 21-item PCCoc/rheum showed good accordance with the conceptual framework, improved fit, functioning response categories and no DIF, and its reliability was 0.86.

    Conclusion: We found general support for the appropriateness of the PCCoc/rheum as an outcome measure of patient-perceived PCC in nurse-led outpatient rheumatology clinics. While in need of further testing, the 21-item PCCoc/rheum has the potential to evaluate outpatient PCC from a patient perspective.

  • 4.
    Bala, Sidona-Valentina
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Forslind, Kristina
    Department of Clinical Science, Section of Rheumatology, Faculty of Medicine Lund University, Lund, Sweden.
    Fridlund, Bengt
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Samuelson, Karin
    Department of Health Sciences, Lund University, Lund, Sweden.
    Svensson, Björn
    Department of Clinical Science, Section of Rheumatology, Faculty of Medicine Lund University, Lund, Sweden.
    Hagell, Peter
    The PRO-CARE Group, School of Health & Society, Kristianstad University, Kristianstad, Sweden.
    Person-centred care in nurse-led outpatient rheumatology clinics: Conceptualization and initial development of a measurement instrument2018In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 16, no 2, p. 287-295Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Person-centred care (PCC) is considered a key component of effective illness management and high-quality care. However, the PCC concept is underdeveloped in outpatient care. In rheumatology, PCC is considered an unmet need and its further development and evaluation is of high priority. The aim of the present study was to conceptualize and operationalize PCC, in order to develop an instrument for measuring patient-perceived PCC in nurse-led outpatient rheumatology clinics.

    METHODS: A conceptual outpatient PCC framework was developed, based on the experiences of people with rheumatoid arthritis (RA), person-centredness principles and existing PCC frameworks. The resulting framework was operationalized into the PCC instrument for outpatient care in rheumatology (PCCoc/rheum), which was tested for acceptability and content validity among 50 individuals with RA attending a nurse-led outpatient clinic.

    RESULTS: The conceptual framework focuses on the meeting between the person with RA and the nurse, and comprises five interrelated domains: social environment, personalization, shared decision-making, empowerment and communication. Operationalization of the domains into a pool of items generated a preliminary PCCoc/rheum version, which was completed in a mean (standard deviation) of 5.3 (2.5) min. Respondents found items easy to understand (77%) and relevant (93%). The Content Validity Index of the PCCoc/rheum was 0.94 (item level range, 0.87-1.0). About 80% of respondents considered some items redundant. Based on these results, the PCCoc/rheum was revised into a 24-item questionnaire.

    CONCLUSIONS: A conceptual outpatient PCC framework and a 24-item questionnaire intended to measure PCC in nurse-led outpatient rheumatology clinics were developed. The extent to which the questionnaire represents a measurement instrument remains to be tested.

  • 5.
    Bala, Sidona-Valentina
    et al.
    Department of Health Sciences, Lund University, Lund, Sweden.
    Samuelson, Karin
    Department of Health Sciences, Lund University, Lund, Sweden .
    Hagell, Peter
    The PRO-CARE Group, School of Health and Society, Kristianstad University, Kristianstad, Sweden.
    Fridlund, Bengt
    Jönköping University, School of Health and Welfare, HHJ. ADULT. Department of Health Sciences, Lund University, Lund, Sweden .
    Forslind, Kristina
    Section of Rheumatology, Department of Medicine, Helsingborg Hospital, Helsingborg, Sweden.
    Svensson, Björn
    Section of Rheumatology at the Institution of Clinical Science, Lund University, Lund, Sweden.
    Thomé, Bibbi
    Department of Health Sciences, Lund University, Lund, Sweden .
    Living with persistent rheumatoid arthritis: A BARFOT study2017In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 26, no 17-18, p. 2646-2656Article in journal (Refereed)
    Abstract [en]

    Aim and objective: To describe and understand the meaning of living with persistent rheumatoid arthritis.

    Background: A considerable number of patients with rheumatoid arthritis live with an ongoing active and symptomatic illness despite access to potent antirheumatic treatment. There is, however, a lack of knowledge about the meaning of living with this severe long-term illness, defined as persistent rheumatoid arthritis.

    Design: A descriptive design based on a hermeneutic phenomenological method was used.

    Methods: Ten adults with persistent rheumatoid arthritis and at least five years disease duration were interviewed. The interviews were analysed according to van Manen's method.

    Results: Living with persistent rheumatoid arthritis revealed four overall themes: an existence dominated by painful symptoms and treatment, radical changes and limitations in one's life, a continual struggle to cope with one's life and to master the illness, and a dependency on those who are close by and the world around. The lifeworld was affected to a varying extent and in various ways by the illness but also by the dependence on its treatment and care that was not experienced as sufficiently meeting needs in terms of security, access to and coordination of care as well as team and rehabilitation services.

    Conclusions: Persistent rheumatoid arthritis and its treatment entail a radical effect on the person's life and quality of life. Current ordinary rheumatology care does not seem to meet the individual needs of the person with persistent rheumatoid arthritis in an optimal way.

    Relevance to clinical practice: A greater knowledge about and understanding of the person who lives with persistent rheumatoid arthritis is important for facilitating the development of care and the relief of suffering. A holistic alternative to conventional clinical practice, such as person-centred care, could be tested as an innovative model of care. Our findings might serve as material for educational and counselling purposes for healthcare professionals. 

  • 6.
    Bertilsson, L.
    et al.
    Department of Rheumatology and Inflammation Research, University of Gothenburg, Sweden.
    Andersson-Gäre, Boel
    Jönköping University, School of Health and Welfare, HHJ, Quality Improvement and Leadership in Health and Welfare. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Fasth, A
    Department of Paediatrics, University of Gothenburg, Sweden.
    Forsblad-d'Elia, H.
    Department of Rheumatology and Inflammation Research, University of Gothenburg, Sweden.
    A 5-year prospective population-based study of juvenile chronic arthritis: onset, disease process, and outcome2012In: Scandinavian Journal of Rheumatology, ISSN 0300-9742, E-ISSN 1502-7732, Vol. 41, no 5, p. 379-82Article in journal (Refereed)
    Abstract [en]

    Objectives: To investigate, in a population-based cohort of patients with juvenile chronic arthritis (JCA), onset characteristics, progression, outcome, and prognostic factors longitudinally for 5 years. Methods: This cohort consisted of 132 incidence cases identified between 1984 and 1986 in southwestern Sweden followed for 5 years with annual reports of subgroup, joint assessment, disease activity, eye examinations, laboratory measurements, and medication. At the 5-year follow-up, the Childhood Health Assessment Questionnaire (Child-HAQ) was evaluated. European League Against Rheumatism (EULAR) criteria for diagnosis and disease activity were used. Results: During the 5 years only four patients were lost to follow-up, 34% changed subgroup and 8% developed uveitis. At the 5-year follow-up the disease was active in 12% of the patients, stable in 28%, inactive in 25%, and in remission in 34%. Among those examined, 24% had radiological changes, of whom half had advanced changes. The Child-HAQ median score at the 5-year follow-up was 0.13 (range 0.0-1.9). The number of involved joints at inclusion correlated positively with active disease at the 5-year follow-up. Age at disease onset, the number of involved joints, and the number of joints with arthritis correlated positively with continuous disease and Child-HAQ score. Conclusion. Our study shows a diverse disease course during the first 5 years of JCA where one-third changed subgroup and two-thirds did not reach remission. Age of disease onset, the number of involved joints, and the number of joints with arthritis at inclusion were associated with poor outcome at the 5-year follow-up.

  • 7.
    Björk, Mathilda
    Linköpings universitet, Hälsouniversitetet.
    Aspects of disability in early rheumatoid arthritis: a five-year follow-up in the Swedish TIRA project2008Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Rheumatoid arthritis (RA) is a progressive disease, often leading to disability. Because the disease course develops rapidly during the first years after diagnosis, more knowledge is needed about the early disease course to minimize later disability. This thesis describes the course of disability in early RA such as hand function, pain intensity, activity limitation and sick leave. In addition, this thesis compares disability between women and men and compares disability between RA patients and referents.

     

    This thesis is primarily based on data from the 320 patients that were included in the multi-centre project in Sweden called ‘Early interventions in rheumatoid arthritis’ (TIRA). A wide range of outcome variables was registered between 1996 and 2006 during regular follow-ups from time for diagnosis through the eight-year follow-up. Outcome regarding disease activity and disability of RA patients still remaining in TIRA at the three and five year follow-up respectively are used in this thesis. Data concerning sick leave were obtained for the patients during six years (1993-2001) – three years before and three years after diagnosis. Referents were included in two of the studies. Data regarding disability in referents were obtained according to hand function and activity limitation using the Health Assessment Questionnaire (HAQ). Data for sick leave were obtained for six years in referents, for the same period as the RA patients.

    For most variables, disability in RA was most pronounced at time of diagnosis but before intervention started. Disability was then reduced already at the 3-month follow-up and thereafter affected but stable during the following five years. The exception was participation, reflected by sick leave, a variable that was stable from inclusion to three years from diagnosis. Activity limitation, pain intensity and sick leave in RA that represents different aspects of disability were explained by other aspects of disability and contextual factors rather than by disease activity. RA affects women and men differently in some aspects. Women had more severe course of activity limitations than men according to HAQ. Men were more affected than women in range of motion, although the differences were small in a clinical perspective. However, pain intensity and frequency of sick leave did not differ between women and men. Patients with RA have pronounced disability in relation to referents although several variables improve soon after diagnosis. This discrepancy refers to hand function as well as activity limitations and sick leave. The frequency of sick leave increased during the year before diagnosis in relation to referents and was thereafter high compared to sick leave in referents.

  • 8.
    Feldhusen, Caroline
    et al.
    Sahlgrenska akademin.
    Björk, Mathilda
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. ADULT.
    Forsblad d'Elia, Helena
    Sahlgrenska akademin.
    Mannerkorpi, Kaisa
    Sahlgrenska akademin.
    I am so tired of being tired: – a focus group study of fatigue in RA2011Conference paper (Refereed)
    Abstract [en]

    BakgrundFatigue is a prominent symptom in persons with Rheumatoid Arthritis (RA)and has great impact of daily life. The knowledge about how persons with RA in working age are affected by fatigue is limited. The aim of this study was to describe how persons with RA in working age experience and handle their fatigue in everyday life.MetodSix focus group discussions were conducted in 25 persons with RA (19 women/ 6 men) age 20-60 years. The discussions were recorded, transcribed verbatim and analyzed according to qualitative content analysis which resulted in four categories: The nature of fatigue in RA, limitations due to the fatigue, communicating the fatigue and strategies to handle the fatigue.ResultatThe participants experienced their fatigue as a major symptom. Because of its persistence and unpredictable nature it caused feelings of frustration, helplessness and anger. The increased need for rest and sleep caused an imbalance in daily life when valued life activities were forced to be omitted in favor of work. They were feeling limited in everyday life when the fatigue made it impossible to fulfill their roles as expected by themselves and by others. The participants expressed difficulties in communicating about the fatigue and to gain acceptance from the social environment including family, friends and health professionals. They adjusted to whom they were talking to about their fatigue to avoid being seen as lazy, boring or whining. To handle the fatigue in everyday life, planning and prioritizing to find balance was essential. The respondents also used mental strategies to handle the fatigue such as accepting the fatigue and focusing on the possibilities.SammanfattningFatigue causes considerable consequences in persons with RA in working age, living an active life and rating a low general disability. The responsibility for managing fatigue and the struggle of finding balance between important parts in life was taken by the participants themselves because fatigue was not perceived to be a factor given much consideration during medical consultation. This draws attention to the importance for health professionals to address the fatigue and its complexity and unpredictability, even in working persons with low disability.

  • 9.
    Feldthusen, Caroline
    et al.
    Sahlgrenska akademin.
    Björk, Mathilda
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. ADULT.
    Forsblad-d'Elia, Helena
    Sahlgrenska akademin.
    Mannerkorpi, Kaisa
    Sahlgrenska akademin.
    I am so tired of being tired: – a focus group study of fatigue in RA2011Conference paper (Refereed)
    Abstract [en]

    Background: Fatigue is a prominent symptom in RA and most negative impact from fatigue seems to be experienced by younger persons. Even in individuals with RA who are able to successfully participate in a wide spectrum of demanding daily activities, fatigue has been shown to be significant. The knowledge about how younger persons with RA experience and handle their fatigue is limited.Objectives: The aims were to explore, by means of qualitative interviews, how fatigue is experienced by persons with RA in working age and to identify when fatigue is experienced as a limitation and how it is handled in everyday life.Methods: Six focus group interviews were conducted with 25 (19 women, 6 men) persons. Inclusion criteria: >30 mm fatigue on a 100 mm visual analogue scale, age between 20-60 years and fulfill classification criteria of rheumatoid arthritis. The persons were asked to discuss their fatigue related to RA as well as how fatigue affected everyday life and how fatigue was handled. Transcripts were systematically analyzed by content analysis identifying units, codes, sub categories, categories and a theme (1). The categories and theme were validated by an expert in the field and by a research partner with RA.Results: Fatigue was experienced by the respondents as a significant symptom. Because of its persistence and unpredictable nature it caused feelings of frustration, helplessness and anger. The respondents expressed difficulties in communicating about the fatigue and to get understanding from the social environment including family, friends and healthcare. They were feeling limited in everyday life when the fatigue made it impossible to fulfill the roles as expected by themselves and by others. Feelings of shame, being lazy and boring were common. Finding balance between important parts of life such as work, family, leisure time, social activities and rest was mentioned as difficult. To handle the fatigue in everyday life planning and prioritizing among activities was essential. The respondents also used mental strategies to handle the fatigue including trying to accept the fatigue and focus on the possibilities.Conclusions: The result showed that fatigue in persons with RA in working age was a symptom of great importance that needs to be more highlighted in the clinical care. Even if the patients did not report extremely high levels of fatigue the consequences were extensive. An understanding of the complexity of fatigue in RA could help the persons to find a better balance between important parts in life.

  • 10.
    Feldthusen, Caroline
    et al.
    Department of Physical and Occupational Therapy, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Björk, Mathilda
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Forsblad-d'Elia, Helena
    Department of Physical and Occupational Therapy, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Mannerkorpi, Kaisa
    Department of Physical and Occupational Therapy, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Perception, consequences, communication, and strategies for handling fatigue in persons with rheumatoid arthritis of working age-a focus group study2013In: Clinical Rheumatology, ISSN 0770-3198, E-ISSN 1434-9949, Vol. 32, no 5, p. 557-566Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe how persons with rheumatoid arthritis (RA) of working age experience and handle their fatigue in everyday life. Six focus group discussions were conducted focusing on experiences of fatigue in 25 persons with RA (19 women, 6 men), aged 20–60 years. The discussions were recorded, transcribed verbatim, and analyzed according to qualitative content analysis. The analyses resulted in four categories. (1) Perception of fatigue: Fatigue was experienced different from normal tiredness, unpredictable, and overwhelming. It was associated with negative emotions, changed self-image, and fears. Feelings of frustration and shame were central when the persons were forced to omit valued life activities. (2) Consequences due to fatigue: The fatigue caused changes in cognitive ability, ability to act, and overall activity pattern where the increased need for rest and sleep caused an imbalance in daily life. The participants struggled not to let the fatigue interfere with work. The fatigue also brought negative consequences for their significant others. (3) Communicating fatigue: Fatigue was difficult to gain understanding for, and the participants adjusted their communication accordingly; it was important to keep up appearances. During medical consultation, fatigue was perceived as a factor not given much consideration, and the participants expressed taking responsibility for managing their fatigue symptoms themselves. (4) Strategies to handle fatigue: Strategies comprised conscious self-care, mental strategies, planning, and prioritizing. Fatigue caused considerable health problems for persons with RA of working age: negative emotions, imbalance in daily life due to increased need for rest, and difficulties gaining understanding. This draws attention to the importance of developing new modes of care to address fatigue in RA. Person-centered care to improve balance in life may be one approach needing further investigations.

  • 11. Hagelberg, Stefan
    et al.
    Andersson Gäre, BoelJönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.Fasth, AndersMånsson, BengtEnman, Yvonne
    Barnreumatologi2008Collection (editor) (Other academic)
  • 12.
    Hallert, Eva
    et al.
    Linköping University.
    Björk, Mathilda
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. ADULT.
    Dahlström, Örjan
    Linköping University.
    Skogh, Thomas
    Linköping University.
    Thyberg, Ingrid
    Linköping University.
    Disease activity and disability in women and men with early rheumatoid arthritis (RA): An 8-year followup of a Swedish early RA project2012In: Arthritis Care and Research, ISSN 0893-7524, E-ISSN 1529-0123, Vol. 64, no 8, p. 1101-1107Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To compare women and men regarding course of disease activity and disability over 8 years from diagnosis of recent onset rheumatoid arthritis (RA).

    PATIENTS AND METHODS: 149 patients were followed for 8 years from RA diagnosis (1996-98) regarding 28-joint count disease activity score (DAS28), pain (visual analogue scale, VAS), grip force, Grip Ability Test (GAT), Signals of Functional Impairment (SOFI hand, upper/lower extremity), walking speed, activity limitation (Health Assessment Questionnaire, HAQ) and prescribed disease-modifying anti-rheumatic drugs (DMARDs).

    RESULTS: Disease activity pattern over time was similar in women and men, showing improvement during the first year and thereafter a stable situation during 6 years. However, at the 7- and 8-year follow-ups deterioration was seen with a less favourable course in women. HAQ did not differ between sexes at diagnosis, but at all follow-ups women had significantly higher scores than men. Women also had lower grip force and lower walking speed, but higher upper extremity mobility. DMARD prescription was similar for both sexes. Over eight years, disease duration, sex, biologics, grip force, SOFI-hand and pain intensity together explained 43% of the variation in DAS, while grip force, SOFI-lower, GAT and pain intensity could together explain 55% of variations in HAQ.

    CONCLUSIONS: Disease activity was fairly well managed, but disability gradually deteriorated. Despite similar medication, women had more disability than men. The discrepancy between disease activity and disability indicates unmet needs for multi-professional interventions to prevent progressing disability and patients at risk for disability need to be identified early in the process. © 2012 by the American College of Rheumatology.

  • 13.
    Hallert, Eva
    et al.
    Linköping University.
    Björk, Mathilda
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation.
    Thyberg, Ingrid
    Linköping University.
    Development of disease activity and disability in women and men with early rheumatoid arthritis: 8 years of follow-up from the Swedish TIRA-project2010Conference paper (Refereed)
    Abstract [en]

    Background: Previous studies have reported that disability is strongly associated with disease activity in rheumatoid arthritis (RA) and disability at time of diagnosis has also proved to be a consistent predictor of disability over time.Objectives: To investigate the course of disease activity and disability over 8 years in early RA and to analyse differences between women and men.Methods: 149 patients with disease duration <1 year were included in the Swedish early RA-cohort "TIRA". Patients were followed prospectively for 8 years from the time of diagnosis. Disease activity was assessed by DAS28. Disability was measured by pain (VAS), grip force (Grippit), 'grip ability test' (GAT), range of motion in hand, upper and lower extremity (SOFI), walking speed and Health Assessment Questionnaire (HAQ). Changes over time and differences between women and men were evaluated.Results: Disease activity decreased over time from inclusion to the 8-year follow-up for both women and men. Disability as measured by SOFI (hand, upper and lower extremity) and walking time was improved during the first year after diagnosis but at the 7 and 8 year follow-up, the level of disability was comparable to the level at inclusion. Pain, grip force and GAT were also improved during the first years but thereafter remained stable. HAQ scores were similar in men and women at inclusion. After initial improvement, HAQ remained at a stable level in men, while scores for women deteriorated from year 2 onwards and had reached back to baseline levels at 8 year follow-up. More disability in women than men was also seen in grip force whereas men had more disability than women in SOFI upper extremity. There were no significant differences between women and men in disease activity or disability as measured by VAS pain, GAT, SOFI hand or SOFI lower extremity during the 8-year follow-up.Conclusion: Although disease activity was well managed, disability deteriorated over 8 years with a less favourable course in women than men. Besides controlling disease activity, there is accordingly a need for regular assessments to detect and prevent progressing disability in RA-patients, not only in the early phase of disease, but also over the following years

  • 14.
    Larsson, Ingrid
    et al.
    Halmstad University.
    Fridlund, Bengt
    Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Arvidsson, Barbro
    Halmstad University.
    Teleman, Annika
    Capio Movement Hospital, Halmstad, Sweden.
    Svedberg, Petra
    Halmstad University.
    Bergman, Stefan
    Halmstad University.
    A nurse-led rheumatology clinic versus rheumatologist-led clinic in monitoring of patients with chronic inflammatory arthritis undergoing biological therapy: A cost comparison study in a randomised controlled trial2015In: BMC Musculoskeletal Disorders, ISSN 1471-2474, E-ISSN 1471-2474, Vol. 16, p. 1-10, article id 354Article in journal (Refereed)
    Abstract [en]

    Background: Recommendations for rheumatology nursing management of chronic inflammatory arthritis (CIA) from European League Against Rheumatism (EULAR) states that nurses should take part in the monitoring patients' disease and therapy in order to achieve cost savings. The aim of the study was to compare the costs of rheumatology care between a nurse-led rheumatology clinic (NLC), based on person-centred care (PCC), versus a rheumatologist-led clinic (RLC), in monitoring of patients with CIA undergoing biological therapy. Methods: Patients with CIA undergoing biological therapy (n = 107) and a Disease Activity Score of 28 <= 3.2 were randomised to follow-up by either NLC or RLC. All patients met the rheumatologist at inclusion and after 12 months. In the intervention one of two annual monitoring visits in an RLC was replaced by a visit to an NLC. The primary outcome was total annual cost of rheumatology care. Results: A total of 97 patients completed the RCT at the 12 month follow-up. Replacing one of the two annual rheumatologist monitoring visits by a nurse-led monitoring visit, resulted in no additional contacts to the rheumatology clinic, but rather a decrease in the use of resources and a reduction of costs. The total annual rheumatology care costs including fixed monitoring, variable monitoring, rehabilitation, specialist consultations, radiography, and pharmacological therapy, generated (sic)14107.7 per patient in the NLC compared with (sic)16274.9 in the RCL (p = 0.004), giving a (sic)2167.2 (13 %) lower annual cost for the NLC. Conclusions: Patients with CIA and low disease activity or in remission undergoing biological therapy can be monitored with a reduced resource use and at a lower annual cost by an NLC, based on PCC with no difference in clinical outcomes. This could free resources for more intensive monitoring of patients early in the disease or patients with high disease activity.

  • 15.
    Lindén, Charlotte
    et al.
    Samrehab/Akutblocket, Västerviks sjukhus, Västervik.
    Björklund, Anita
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. Quality improvements, innovations and leadership in health care and social work. Jönköping University, School of Health Science, HHJ. Ageing - living conditions and health.
    Living with rheumatoid arthritis and experiencing everyday life withTNF-a blockers2010In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 17, no 4, p. 326-334Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe how persons with RA from an area in western Sweden experience everyday life with TNF-alfa-blockers. A purposive sampling of 11 women and four men, with an age ranging from 25 to 70 years, was conducted. A phenomenological approach was used in the study. The data were collected by unstructured in-depth interviews. The data analysis resulted in six code groups, of which four have appurtenant sub-groups. The six code groups are: "A noticeable change dominates the picture”; “Change in bodily and mental symptoms enables activity”; “Enabling care for oneself and others”; "Enabling improved or continued productivity”; “More rewarding leisure time”; and “Drawbacks of the medication”. The findings show that most of the informants had experienced dramatic changes in their daily lives since the medication reduced their symptoms, resulting in an increased level of activity.

    Keywords: Activities of daily life (ADL), consequences for occupational therapy, enabling activity, phenomenological approach

     

     

  • 16.
    Saffari, Mohsen
    et al.
    Health Research Center, Life Style Institute, Baqiyatallah University of Medical Sciences, Tehran, Iran.
    Emami Meybodi, Mohammad Kazem
    Baqiyatallah Hospital, Baqiyatallah University of Medical Sciences, Tehran, Iran.
    Sanaeinasab, Hormoz
    Health Education Department, Faculty of Health, Baqiyatallah University of Medical Sciences, Tehran, Iran.
    Karami, Ali
    Health Education Department, Faculty of Health, Baqiyatallah University of Medical Sciences, Tehran, Iran.
    Pakpour, Amir H.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Social Determinants of Health Research Center (SDH), Qazvin University of Medical Sciences, Qazvin, Iran.
    Koenig, Harold G
    Psychiatry and Behavioral Sciences, Duke University Medical Center, Durham, NC, USA.
    A theory of planned behavior-based intervention to improve quality of life in patients with knee/hip osteoarthritis: a randomized controlled trial2018In: Clinical Rheumatology, ISSN 0770-3198, E-ISSN 1434-9949, Vol. 37, no 9, p. 2505-2515Article in journal (Refereed)
    Abstract [en]

    Osteoarthritis (OA) is a common chronic disorder among elderly people that affects joints such as the knee and hip in particular. The objective of the current study was to examine the efficacy of an intervention based on a theory of planned behavior (TPB) in improving health-related quality of life in middle-age and older adults with this condition. One hundred twenty patients diagnosed with knee/hip OA were recruited from a general hospital. Measures administered at baseline were the SF-12, EuroQol (EQ-5D), Osteoarthritis Knee and Hip Quality of Life (OAKHQoL), and TPB questionnaire. Also assessed were body mass index (BMI), Kellgren-Lawrence Scale, six-minute walk test (SMWT), muscle strength, range of motion (ROM), and joint tenderness and swelling. Participants were randomly assigned to either the intervention (n = 60) or the control group (n = 60). The intervention group received an educational program based on TPB that was administered over 1 month. The control group did not receive this treatment. Three months after the intervention, both groups were reevaluated and comparisons made. Compared to the no-treatment control group, those in the intervention group scored higher on HRQoL, both general and specific, at 3-month follow-up (p < 0.01). The only exception was the vitality domain. Significant differences were also found on the TPB questionnaire, the SMWT, and muscle strength in the expected direction (p < 0.05). While those in the intervention group improved significantly on all clinical measures from pre-test to post-test, those in the control group showed improvement only on BMI and joint tenderness. This TPB-based intervention was found to be efficacious in improving HRQoL and several clinical parameters in patients with knee/hip OA. Studies are needed to examine the effectiveness of this intervention in patients with other chronic medical conditions.

  • 17.
    Thyberg, Ingrid
    et al.
    Linköping university.
    Dahlström, Örjan
    Linköping university.
    Björk, Mathilda
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. ADULT.
    Arvidsson, Patrik
    Linköping university.
    Thyberg, Mikael
    Linköping University.
    HAQ scores related to persistent disabilities 8 years efter diagnosis of RA despite reduction of DAS-28.: The Swedish TIRA study2011Conference paper (Refereed)
    Abstract [en]

    Background: Early instituted disease modifying anti rheumatic drugs (DMARD:s) leads to reduced disease activity. Critical levels of disease activity measured with Disease Activity Score 28 joint count (DAS-28) are widely used to identify needs and evaluate outcomes of DMARD:s. Early instituted DMARD:s also reduce disability, but some patients still have disabilities and there is a need to establish clinically useful routines to identify patients with different disabilities, and thereby possible unmet needs for rehabilitation as a complement to their medication.Objectives: To discriminate sub-groups of patients due to HAQ levels and relate these sub-groups to disease activity and more comprehensive aspects of disability.Methods: 132 patients (68% women) with recent-onset (≤1 year) RA who fulfilled ≥4/7 RA classification criteria or at least: morning stiffness ≥60 minutes, symmetrical arthritis, and arthritis of small joints, and included in the Swedish TIRA-1 cohort during 1996-1998, constituted the study group. All patients had access to rehabilitation and regular contact with a multi-professional team, but there were no standardized criteria for further assessments or interventions. Anti-CCP antibodies were analysed. Disease activity (DAS-28), Health Assessment Questionnaire (HAQ), Short Form 36 (SF-36) and ongoing DMARD:s were registered at inclusion and thereafter yearly. In the presented analysis, the study group was divided into a high-HAQ group (score≥1) and a low-HAQ group (score<1) based on the HAQ score at the 8 year follow-up (1).Results: The sub-group of 48 patients (36%) with a HAQ score ≥1 at the 8 year follow-up had a higher mean HAQ score already at inclusion and further on at all visits compared to the low-HAQ group. 32 patients (24%) had high HAQ-score both at inclusion and at Year 8. Also, more comprehensive aspects of disability reported with the 8 dimensions of SF-36 differed significantly between these sub-groups at the majority of the visits. Age and Anti-CCP did not differ between sub-groups while the high-HAQ group had a higher DAS-28 at most visits except at inclusion. In accordance with known sex differences, the majority of the patients in the high-HAQ group were women. Despite higher frequencies of DMARD:s, the HAQ-score in the high-HAQ group showed a persistent divergence in contrast to the improvement in the low-HAQ group, and in contrast to the DAS-28 that showed improvement over time in both groups. Thus, a HAQ score ≥1 at the 8 year follow-up indicated persistent and comprehensive disabilities, and supposed needs for more effective or more specific rehabilitation as a complement to the medication in 36% of the study group.Conclusions: The HAQ-score is clinically useful as a complement to DAS-28, especially to identify patients with unmet needs for further rehabilitation assessments.

  • 18.
    Thyberg, Ingrid
    et al.
    Linköping University.
    Dahlström, Örjan
    Linköping University.
    Björk, Mathilda
    Jönköping University, School of Health Science, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health Science, HHJ. ADULT.
    Arvidsson, Patrik
    Linköping University.
    Thyberg, Mikael
    Linköping University.
    Potential of the HAQ score as clinical indicator suggesting comprehensive multidisciplinary assessments: the Swedish TIRA cohort 8 years after diagnosis of RA2012In: Clinical Rheumatology, ISSN 0770-3198, E-ISSN 1434-9949, Vol. 31, no 5, p. 775-783Article in journal (Refereed)
    Abstract [en]

    This study explores the potential of the health assessment questionnaire (HAQ) score as a clinical indicator that can be used to suggest comprehensive multidisciplinary assessments, by relating it to more general aspects of disability. In a cohort of 132 patients with early RA (mean age 55, 68% women), 28 joint count Disease Activity Scores (DAS-28), HAQ, and Short Form 36 (SF-36) scores were registered at annual follow-up visits 8 years after diagnosis. The patients were tentatively sub-grouped into a high-HAQ group (HAQ ≥1 at the 8-year follow-up) and a low-HAQ group. The high-HAQ group, comprising 36% of the cohort, had a higher mean HAQ score at inclusion and beyond at all visits compared to the low-HAQ group, and 24% of all individual patients in the high-HAQ group had a HAQ score ≥1 at inclusion. Although the DAS-28 improved in both groups, patients in the high-HAQ group also had significantly more persistent disability according to the SF-36: five scales at each follow-up visit and all eight scales at the majority of the visits. Individual RA patients with HAQ ≥1 probably have considerable persistent disabilities according to the SF-36. The HAQ score could be used as a clinical indicator suggesting comprehensive multidisciplinary assessments of the components of disability and corresponding interventions, in addition to the established use of HAQ at group levels and in parallel with the medication strategy based on DAS-28.

  • 19.
    Östlund, Gunnel
    et al.
    Division of Social Work, School of Health, Care and Social Welfare, Mälardalen University, 631 05, Eskilstuna, Sweden.
    Björk, Mathilda
    Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Thyberg, Ingrid
    Rheumatology, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linköping University, Linköping, Sweden.
    Thyberg, Mikael
    Rehabilitation Medicine, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
    Valtersson, Eva
    Rehabilitation Section NSC, County Council of Östergötland, Linköping, Sweden.
    Stenström, Birgitta
    Patient Research Partner, The Swedish Rheumatism Association, Stockholm, Sweden.
    Sverker, Annette
    Rehabilitation Section NSC, County Council of Östergötland, Linköping, Sweden.
    Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis: a qualitative interview study (the Swedish TIRA project)2014In: Clinical Rheumatology, ISSN 0770-3198, E-ISSN 1434-9949, Vol. 33, no 10, p. 1403-1413Article in journal (Refereed)
    Abstract [en]

    Psychological distress is a well-known complication in rheumatoid arthritis (RA), but knowledge regarding emotions and their relationship to participation restrictions is scarce. The objective of the study was to explore emotions related to participation restrictions by patients with early RA. In this study, 48 patients with early RA, aged 20-63 years, were interviewed about participation restrictions using the critical incident technique. Information from transcribed interviews was converted into dilemmas and linked to International Classification of Functioning, Disability, and Health (ICF) participation codes. The emotions described were condensed and categorized. Hopelessness and sadness were described when trying to perform daily activities such as getting up in the mornings and getting dressed, or not being able to perform duties at work. Sadness was experienced in relation to not being able to continue leisure activities or care for children. Examples of fear descriptions were found in relation to deteriorating health and fumble fear, which made the individual withdraw from activities as a result of mistrusting the body. Anger and irritation were described in relation to domestic and employed work but also in social relations where the individual felt unable to continue valued activities. Shame or embarrassment was described when participation restrictions became visible in public. Feelings of grief, aggressiveness, fear, and shame are emotions closely related to participation restrictions in everyday life in early RA. Emotions related to disability need to be addressed both in clinical settings in order to optimize rehabilitative multi-professional interventions and in research to achieve further knowledge.

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