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- Brolin, S, et al.
(författare)
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COMPARISON OF EDUCATIONAL NEEDS AMONG PATIENTS WITH ANCA ASSOCIATED VASCULITIS AND SYSTEMIC LUPUS ERYTHEMATOSUS - A PILOT STUDY USING THE EDUCATIONAL NEEDS ASSESSMENT TOOL.
- 2022
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Ingår i: ANNALS OF THE RHEUMATIC DISEASES. - : BMJ. - 0003-4967 .- 1468-2060. ; 81, s. 1106-1106
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Patients with chronic disease need to learn and adapt to symptoms, treatment, and the impact of disease. Knowledge about the specific disease is one way to empower the patients to cope. We previously reported that disease duration and sex, rather than disease characteristics associate with an increased need of educational support in ANCA associated vasculitis (AAV) (1). Data on how specific educational needs vary between different inflammatory rheumatic diseases are lacking.ObjectivesThe aim of the study was to compare educational needs among two chronic systemic inflammatory diseases, AAV and Systemic lupus erythematosus (SLE) using the Educational Needs Assessment Tool (ENAT).MethodsThis pilot study included cross-sectional data from two separate cohorts, AVV and SLE, from the Rheumatology clinic at Karolinska University Hospital in Sweden during 2009-2022. Inclusion criteria were minimum age of 18 years and literate in Swedish. Exclusion criterion was cognitive impairment interfering with literate capabilities.Educational needs were captured by patients’ answers to the questionnaire ENAT. The ENAT consists of 39 questions, presented as total ENAT and seven domains (managing pain, movement, feelings, disease process, treatment, self-management and, support systems) each containing 4-7 items (from ’not at all important’ = 0, to ‘extremely important’ = 3). The participants’ responses were presented as “mean % of the domain score”, from 0 interpreted as no educational need to 100 as highest educational need. Participants with AAV and SLE respectively were individually matched for disease duration, sex, and education. For comparisons paired samples t-test were used.ResultsTwenty-two matched pairs (86% female), mean (SD) disease duration 5.7 (8) years, were included. The mean age were 43 (14.0) years for AAV 61 and (14.7) years for SLE (p=0.001). Educational length was reported as mean 14 (3.6) years among SLE patients and 13 (2.9) years among AAV patients (p=0.111).In all patients, the mean total ENAT was 60.4% (range 23-100%) and did not differ between the two cohorts (p=0.2) (Table 1). In the pooled group the highest educational need was found in the domains ‘Disease process’ (mean 78.3%) and ‘Self-management’ (mean 75.9%). Lowest educational need was found in the domains ‘Movement’ (mean 46.7%) and ‘Managing pain’ (mean 51.6%).Table 1.Comparison of ENAT scores (mean % of max) (SD) between patient with SLE and AAVENAT domainAll n=44SLE n=22AAV n=22pManaging pain51.6 (29.8)50.8 (28.7)52.4 (32.2)0.867Movement46.7 (35.1)41.9 (34.2)49.2 (35.7)0.500Feelings63.1 (31.0)54.6 (30.6)70.4 (30.3)0.087Disease process78.3 (22.1)73.9 (23.0)83.4 (20.9)0.130Treatments60.7 (35.1)46.4 (36.0)74.2 (30.4)0.021Self-management75.9 (21.1)75.8 (18.8)76.9 (24.3)0.886Support systems54.0 (30.2)49.2 (31.4)58.7 (28.8)0.302Total ENAT60.4 (24.0)55.7 (22.8)65.0 (24.8)0.216Patients with AAV report a higher educational need in total ENAT as well as in all individual domains, compared to SLE (Table 1), but only significantly in the domain ‘Treatments’ where the educational need among AAV was mean 74.2% (30.4) and for SLE mean 46.4% (SD 36.0) (p = 0.02).ConclusionIn this pilot study with SLE and AAV, we found educational needs regarding ‘Treatments’ to be substantially increased among the participants with AAV, compared to SLE, despite that the participants were matched for disease duration and sex, two variables previously found to be indicators of increased educational needs. AAV patients with higher educational needs were older, this result needs to be further explored in a larger sample.References[1]Brolin S, Lövström B, et al. POS1476-HPR The need for information among patients with anca associated vasculitis differs between groups. Annals of the Rheumatic Diseases. 2021;80(Suppl 1):1023.AcknowledgementsWe are grateful to the participating patients, and colleagues assisting in the data collection.Disclosure of InterestsNone declared
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- Eriksson, K, et al.
(författare)
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Physical activity in patients with systemic lupus erythematosus and matched controls.
- 2012
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Ingår i: Scandinavian journal of rheumatology. - : Informa UK Limited. - 1502-7732 .- 0300-9742. ; 41:4, s. 290-7
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: As physical activity reduces cardiovascular disease (CVD) in the general population, studies concerning the frequency of physical activity in patients with systemic lupus erythematosus (SLE) are needed. Earlier studies indicate that patients with SLE are physically inactive but there are few studies that compare physical activity in SLE to that in the general population. The aim of this study was to examine different aspects of physical activity in patients with SLE and population controls and to investigate how they relate to disease activity and organ damage.METHODS: Two hundred and seventy-two patients with SLE and 272 population controls, individually matched for age, gender, and living region, were investigated clinically. For patients, the investigation included assessment of disease activity using the SLE Disease Activity Index (SLEDAI) and organ damage using the Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC) Damage Index. All participants filled out an extensive questionnaire concerning physical activity, exercise capacity, and sedentary behaviour.RESULTS: The mean age of the patients was 47 (SD 15) years. Patients reported lower (p < 0.001) capacity for walking, jogging, and running and more limiting factors for these activities than controls (p < 0.001). Patients exercised less often than controls (p < 0.01) and patients with SLICC ≥ 2 points reported less physical activity on 'low to moderate' intensity compared to their controls (p < 0.05). Sedentary behaviour was reported by 18% of the patients and 26% of the controls (ns).CONCLUSION: Patients with SLE reported lower exercise capacity and less frequent exercise than controls. Additionally, patients with more organ damage reported less physical activity, and these, together with patients who have a sedentary behaviour, should be the focus of intervention programmes to support increased physical activity and exercise in SLE.
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