| 1. |
- Östlund, Gunnel, 1956-, et al.
(författare)
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Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis : A qualitative interview study (The Swedish TIRA project)
- 2014
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Ingår i: Clinical Rheumatology. - : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 33:10, s. 1403-1413
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Tidskriftsartikel (refereegranskat)abstract
- Background: Psychological distress is a well-known complication in rheumatoid arthritis (RA), but knowledge regarding emotions, and their relationship to participation restrictions, is scarce.Objectives: To explore emotions related to participation restrictions by patients with early RA. Method: In this study, 48 patients with early RA, aged 20-63 years, were interviewed about participation restrictions using Critical Incident Technique. Information from transcribed interviews was converted into dilemmas and linked to ICF participation codes. The emotions described were condensed and categorized.Results: Hopelessness and sadness were described when trying to perform daily activities such as getting up in the mornings, 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.Conclusions: 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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| 2. |
- Lindén, Charlotte, et al.
(författare)
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Living with rheumatoid arthritis and experiencing everyday life with TNF-α blockers
- 2010
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Ingår i: Scandinavian Journal of Occupational Therapy. - : Taylor & Francis. - 1103-8128 .- 1651-2014. ; 17:4, s. 326-334
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Larsson, Ingrid, et al.
(författare)
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Patients' independence of a nurse for the administration of subcutaneous anti-TNF therapy : a phenomenographic study
- 2010
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - London : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 5:2, s. 5146-1-5146-10
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Tidskriftsartikel (refereegranskat)abstract
- Rheumatology nursing supports patients to manage their lives and live as independently as possible without pain, stiffness and functional restrictions. When conventional drugs fail to delay the development of the rheumatic disease, the patient may require biological treatment such as self-administered subcutaneous anti-tumour necrosis factor (TNF) therapy. It is therefore important that the patient perspective focuses on the life-changing situation caused by the administration of regular subcutaneous injections. The aim of this study was to describe variations in how patients with rheumatic diseases experience their independence of a nurse for administration of subcutaneous anti-TNF therapy. The study had a descriptive, qualitative design with a phenomenographic approach and was carried out by means of 20 interviews. Four ways of understanding the patients' experience of their subcutaneous anti-TNF therapy and independence of a nurse emerged: the struggling patient; the learning patient; the participating patient; the independent patient. Achieving independence of a nurse for subcutaneous anti-TNF injections can be understood by the patients in different ways. In their strive for independence, patients progress by learning about and participating in drug treatment, after which they experience that the injections make them independent.
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| 4. |
- Heikkila, Katriina, et al.
(författare)
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Job strain and the risk of inflammatory bowel diseases : individual-participant meta-analysis of 95 000 men and women
- 2014
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Ingår i: PLOS ONE. - : Public Library of Science (PLoS). - 1932-6203. ; 9:2, s. e88711-
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Tidskriftsartikel (refereegranskat)abstract
- Background and Aims: Many clinicians, patients and patient advocacy groups believe stress to have a causal role in inflammatory bowel diseases, such as Crohn's disease and ulcerative colitis. However, this is not corroborated by clear epidemiological research evidence. We investigated the association between work-related stress and incident Crohn's disease and ulcerative colitis using individual-level data from 95 000 European adults. Methods: We conducted individual-participant data meta-analyses in a set of pooled data from 11 prospective European studies. All studies are a part of the IPD-Work Consortium. Work-related psychosocial stress was operationalised as job strain (a combination of high demands and low control at work) and was self-reported at baseline. Crohn's disease and ulcerative colitis were ascertained from national hospitalisation and drug reimbursement registers. The associations between job strain and inflammatory bowel disease outcomes were modelled using Cox proportional hazards regression. The study-specific results were combined in random effects meta-analyses. Results: Of the 95 379 participants who were free of inflammatory bowel disease at baseline, 111 men and women developed Crohn's disease and 414 developed ulcerative colitis during follow-up. Job strain at baseline was not associated with incident Crohn's disease (multivariable-adjusted random effects hazard ratio: 0.83, 95% confidence interval: 0.48, 1.43) or ulcerative colitis (hazard ratio: 1.06, 95% CI: 0.76, 1.48). There was negligible heterogeneity among the study-specific associations. Conclusions: Our findings suggest that job strain, an indicator of work-related stress, is not a major risk factor for Crohn's disease or ulcerative colitis.
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| 5. |
- Bertilsson, Lennart, et al.
(författare)
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Disease course, outcome, and predictors of outcome in a population-based juvenile chronic arthritis cohort followed for 17 years
- 2013
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Ingår i: Journal of Rheumatology. - : The Journal of Rheumatology. - 0315-162X .- 1499-2752. ; 40:5, s. 715-724
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To investigate disease course, outcome, and predictors of outcome in an unselected population-based cohort of individuals diagnosed with juvenile chronic arthritis (JCA) followed for 17 years. METHODS: The cohort consisted of 132 incidence JCA cases identified 1984-1986 according to EULAR criteria. At 5-year followup, 129 individuals underwent joint assessment, laboratory measurements, radiographic examination, and medication and functional assessment. At 17-year followup, 86 were examined with joint assessment, laboratory measurements, medication assessment, Health Assessment Questionnaire (HAQ), Keitel functional test (KFT), and Medical Outcomes Study Short Form-36 (SF-36). RESULTS: At 17-year followup, 40% were in remission, 44% changed subgroups, median HAQ score was 0.0 (range 0.0-1.5), and median KFT was 100 (range 54-100). SF-36 scores were significantly lower compared to a reference group. Thirty-nine percent of those in remission at 5-year followup were not in remission at 17-year followup. In multivariate analyses of variables from the 17-year followup: remission was predicted by remission at 5-year followup (OR 4.8); HAQ > 0 by rheumatoid factor (RF)-positivity at 5-year followup (OR 3.6); KFT < 100 by nonremission (OR 11.3); and RF-positivity (OR 5.6) at 5-year followup; and the SF-36 physical component summary score above average of the reference group by remission at 5-year followup (OR 5.8). CONCLUSION: This longterm study of 86 individuals with JCA showed large variability of disease courses and of impaired health-related quality of life. Sixty percent were not in remission at 17-year followup. Longterm outcome was best predicted by and associated with characteristics at 5-year followup rather than those at onset.
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| 6. |
- Hallert, Eva, et al.
(författare)
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Disease activity and disability in women and men with early rheumatoid arthritis : An 8-year follow-up of the Swedish TIRA project
- 2012
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Ingår i: Arthritis Care and Research. - : John Wiley & Sons. - 0893-7524 .- 1529-0123 .- 2151-464X. ; 64:8, s. 1101-1107
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 7. |
- Thyberg, Ingrid, et al.
(författare)
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Potential of the HAQ score as clinical indicator suggesting comprehensive multidisciplinary assessments : the Swedish TIRA cohort 8 years after diagnosis of RA
- 2012
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Ingår i: Clinical Rheumatology. - : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 31:5, s. 775-783
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 8. |
- Bergsten, Ulrika, et al.
(författare)
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Patterns of background factors related to early RA patients' conceptions of the causes of their disease
- 2011
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Ingår i: Clinical Rheumatology. - London : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 30:3, s. 347-352
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the present study was to identify patterns of background factors related to the early RA patients' conceptions of the cause of the disease. Conceptions from a qualitative study formed the basis for the stratification of 785 patients from the Swedish EIRA study answering a question about their own thoughts about the cause to RA. Logistic regression analyses were used to explore the associations between patients' conceptions and relevant background factors: sex, age, civil status, educational level, anti-cyclic citrullinated peptide antibody (anti-CCP) and smoking habits. The results were presented as odds ratios (OR) with 95% confidence intervals (CI). A conception of family-related strain was strongly associated with being young (OR 0.50; 95% CI 0.33-0.78 for age 58-70 vs. 17-46), female (OR 0.38; 95% CI 0.25-0.60 for male vs. female) and having a high level of education (OR 2.15; 95% CI 1.54-3.01 for university degree vs. no degree). A conception of being exposed to climate changes was associated with being male (OR 1.99; 95% CI 1.24-3.22 for male vs. female), having a low level of education (OR 0.33; 95% CI 0.18-0.58 for university degree vs. no degree) and positive Anti-CCP (OR 1.72; 95% CI 1.03-2.87 for positive vs. negative Anti-CCP). Linking patients' conceptions of the cause of their RA to background factors potentially could create new opportunities for understanding the complexity of the aetiology in RA. Furthermore, this information is important and relevant in the care of patients with early RA.
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| 9. |
- Larsson, Ingrid, 1968-, et al.
(författare)
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Patients’ Perceptions of Drug Information Given by a Rheumatology Nurse : A Phenomenographic Study
- 2010
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Ingår i: Musculoskeletal Care. - New Jersey : John Wiley & Sons. - 1478-2189 .- 1557-0681. ; 8:1, s. 36-45
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Tidskriftsartikel (refereegranskat)abstract
- Background: Pain, stiffness and functional restriction of the joints are the main problems experienced by patients with inflammatory rheumatic conditions. The majority of patients with rheumatic diseases require several drugs every day. Adherence is highest among patients who have repeatedly been given drug information by a nurse from the start of the treatment. When developing patient information, it is essential to utilise patients' experiences.Objectives: The purpose of this study was to describe variations in how patients with rheumatic diseases conceive drug information given by a rheumatology nurse.Methods: The study had a descriptive qualitative design with a phenomenographic approach. Fifteen in-patients with rheumatic diseases who had received a new drug agreed to take part in the study and were interviewed.Results: Three descriptive categories emerged: Autonomy, Power and Security. Autonomy was based on the patients' experiences of taking responsibility and participating. Power meant gaining knowledge and being motivated to take the drug. Security involved trust, experiencing care and access to a rheumatology nurse.Conclusions: Patients with a rheumatic disease experienced that drug information from a rheumatology nurse gave them autonomy, power and security. These factors could explain why information from a nurse increases drug treatment adherence.
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| 10. |
- Bertilsson, L, et al.
(författare)
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A 5-year prospective population-based study of juvenile chronic arthritis: onset, disease process, and outcome.
- 2012
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Ingår i: Scandinavian journal of rheumatology. - : Informa UK Limited. - 1502-7732 .- 0300-9742. ; 41:5, s. 379-82
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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