| 11. |
- Feldhusen, Caroline, et al.
(författare)
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I am so tired of being tired : – a focus group study of fatigue in RA
- 2011
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 12. |
- Feldthusen, Caroline, et al.
(författare)
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I am so tired of being tired : – a focus group study of fatigue in RA
- 2011
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Konferensbidrag (refereegranskat)abstract
- 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.
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| 13. |
- Feldthusen, Caroline, 1977, et al.
(författare)
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Perception, consequences, communication, and strategies for handling fatigue in persons with rheumatoid arthritis of working age—a focus group study
- 2013
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Ingår i: Clinical Rheumatology. - : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 32:5, s. 557-66
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Tidskriftsartikel (refereegranskat)abstract
- Abstract 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.
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| 14. |
- Hallert, Eva, et al.
(författare)
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Development of disease activity and disability in women and men with early rheumatoid arthritis: 8 years of follow-up from the Swedish TIRA-project
- 2010
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- 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
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| 15. |
- Larsson, Ingrid, 1968-, et al.
(författare)
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Randomized controlled trial of a nurse-led rheumatology clinic for monitoring biological therapy
- 2014
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Ingår i: Journal of Advanced Nursing. - West Sussex : Wiley. - 0309-2402 .- 1365-2648. ; 70:1, s. 164-175
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Tidskriftsartikel (refereegranskat)abstract
- AimTo compare and evaluate the treatment outcomes of a nurse-led rheumatology clinic and a rheumatologist-led clinic in patients with low disease activity or in remission who are undergoing biological therapy.BackgroundPatients with chronic inflammatory arthritis treated with biological therapy are usually monitored by rheumatologists. Nurse-led rheumatology clinics have been proposed in patients with low disease activity or in remission.DesignRandomized controlled trial.MethodsA 12-month follow-up trial was conducted between October 2009 and August 2011, where 107 patients were randomized into two groups with a 6-month follow-up to a nurse-led rheumatology clinic based on person-centred care (intervention group; n = 53) or to a rheumatologist-led clinic (control group; n = 54). The hypothesis was that the nurse-led clinic outcomes would not be inferior to those obtained from a rheumatologist-led clinic at the 12-month follow-up. The primary outcome was disease activity measured by Disease Activity Score 28.ResultsA total of 47 patients in the intervention group and 50 in the control group completed the 12-month trial. The trial revealed no statistically significant differences between groups in mean change of Disease Activity Score 28, Visual Analogue Scales for pain, the Health Assessment Questionnaire, satisfaction with or confidence in obtaining rheumatology care.ConclusionPatients with stable chronic inflammatory arthritis undergoing biological therapy could be monitored by a nurse-led rheumatology clinic without difference in outcome as measured by the Disease Activity Score 28.
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| 16. |
- Sandqvist, Gunnel, et al.
(författare)
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Managing work life with systemic sclerosis
- 2012
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Ingår i: Rheumatology. - : Oxford University Press (OUP). - 1462-0324 .- 1462-0332. ; 51:2, s. 319-323
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Tidskriftsartikel (refereegranskat)abstract
- Objective. To explore how individuals with systemic sclerosis (SSc) manage their work life. Methods. We conducted four focus group interviews which included 17 patients. The interviews were tape recorded and transcribed verbatim. The transcribed texts were analysed according to thematic content analysis. Relevant statements, that generated preliminary categories, were identified after which, themes and underlying sub-themes were generated. Results. Four themes emerged: adaptation, strategy, communication and attitude. Flexible working hours, workplace and work assignments corresponding to the individuals’ recourses, were the most important adaptation requirements for SSc patients. Reluctance to disclose their illness was the most prominent reason for not requesting adaptations. Strategies to facilitate working at home, such as receiving assistance with household chores as well as buying in cleaning services were easy to realize and saved energy for meaningful activities. The participants tried to prioritize meaningful activities rather than spending energy on unnecessary activities both at work and outside of work. Fatigue influenced activities at work but mostly outside of work and to manage their working life the participants were dependent of having time for recovery, above all rest.Conclusion. The ability to develop adaptations and strategies, to a great extent, depends on the individual’s understanding and acceptance of their disease, awareness and respect for their own needs for meaningful activities and an ability to communicate this at work and outside of work. As health professionals we should enhance the confidence of persons with SSc to strengthen their ability to bring about the necessary dialogue.
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| 17. |
- Thyberg, Ingrid, et al.
(författare)
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HAQ scores related to persistent disabilities 8 years efter diagnosis of RA despite reduction of DAS-28. : The Swedish TIRA study
- 2011
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Konferensbidrag (refereegranskat)abstract
- 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.
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