1.
Bertilsson, Lennart, et al.
(författare)
Disease course, outcome, and predictors of outcome in a population-based juvenile chronic arthritis cohort followed for 17 years
2013
Ingår i: Journal of Rheumatology. - : The Journal of Rheumatology. - 0315-162X .- 1499-2752. ; 40:5, s. 715-724
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.
2.
Bertilsson, L, et al.
(författare)
A 5-year prospective population-based study of juvenile chronic arthritis: onset, disease process, and outcome.
2012
Ingår i: Scandinavian journal of rheumatology. - : Informa UK Limited. - 1502-7732 .- 0300-9742. ; 41:5, s. 379-82
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.
3.
Feldhusen, Caroline, et al.
(författare)
I am so tired of being tired : – a focus group study of fatigue in RA
2011
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.
4.
Feldthusen, Caroline, et al.
(författare)
I am so tired of being tired : – a focus group study of fatigue in RA
2011
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.
5.
Feldthusen, Caroline, 1977, et al.
(författare)
Perception, consequences, communication, and strategies for handling fatigue in persons with rheumatoid arthritis of working age—a focus group study
2013
Ingår i: Clinical Rheumatology. - : Springer Science and Business Media LLC. - 0770-3198 .- 1434-9949. ; 32:5, s. 557-66
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.
