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- Andreoli, L, et al.
(författare)
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EULAR recommendations for women's health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome
- 2017
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Ingår i: Annals of the rheumatic diseases. - : BMJ. - 1468-2060 .- 0003-4967. ; 76:3, s. 476-485
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Tidskriftsartikel (refereegranskat)abstract
- Develop recommendations for women's health issues and family planning in systemic lupus erythematosus (SLE) and/or antiphospholipid syndrome (APS).MethodsSystematic review of evidence followed by modified Delphi method to compile questions, elicit expert opinions and reach consensus.ResultsFamily planning should be discussed as early as possible after diagnosis. Most women can have successful pregnancies and measures can be taken to reduce the risks of adverse maternal or fetal outcomes. Risk stratification includes disease activity, autoantibody profile, previous vascular and pregnancy morbidity, hypertension and the use of drugs (emphasis on benefits from hydroxychloroquine and antiplatelets/anticoagulants). Hormonal contraception and menopause replacement therapy can be used in patients with stable/inactive disease and low risk of thrombosis. Fertility preservation with gonadotropin-releasing hormone analogues should be considered prior to the use of alkylating agents. Assisted reproduction techniques can be safely used in patients with stable/inactive disease; patients with positive antiphospholipid antibodies/APS should receive anticoagulation and/or low-dose aspirin. Assessment of disease activity, renal function and serological markers is important for diagnosing disease flares and monitoring for obstetrical adverse outcomes. Fetal monitoring includes Doppler ultrasonography and fetal biometry, particularly in the third trimester, to screen for placental insufficiency and small for gestational age fetuses. Screening for gynaecological malignancies is similar to the general population, with increased vigilance for cervical premalignant lesions if exposed to immunosuppressive drugs. Human papillomavirus immunisation can be used in women with stable/inactive disease.ConclusionsRecommendations for women's health issues in SLE and/or APS were developed using an evidence-based approach followed by expert consensus.
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- Bostrom, C, et al.
(författare)
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QUALITY OF LIFE IN PEOPLE WITH SYSTEMIC SCLEROSIS WITH DIFFERENT DEGREES OF LUNG DISEASE - A CROSS-SECTIONAL STUDY
- 2020
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Ingår i: ANNALS OF THE RHEUMATIC DISEASES. - : BMJ. - 0003-4967 .- 1468-2060. ; 79, s. 66-66
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- There are few studies evaluating different aspects of quality of life including depressive symptoms and physical capacity and physical activity in patients with systemic sclerosis (SSc) with different degrees of lung disease.Objectives:The aim of this study was to evaluate differences in self-reported disability, physical capacity and activity, depressive symptoms and quality of life, between patients with SSc with no-mild lung disease and those with moderate-endstage lung disease.Methods:In this cross-sectional study, 279 patients with SSc fulfilling the 2013 ACR/EULAR criteria for SSc (84% limited and 16% diffuse SSc) were included. Medsger disease severity scale was used to subgroup the patients into no-mild (n=156) or moderate- endstage lung disease (n=115). Disability was measured with Health Assessment Questionnaire-Disability Index (HAQ-DI); physical capacity (ability to walk, jog/run); and physical activity (different intensities) was measured with three single questions; depressive symptoms with Hospital Anxiety and Depression-scale (HADs); and quality of life was measured with TheShort Form(36) Health Survey (SF-36).Results:Patients with moderate-endstage lung disease reported higher scores on HAQ-DI (p<0.001) and lower scores on SF-36 physical component (p<0.0001) than patients with no-mild lung disease. Patients with moderate-endstage lung disease reported lower physical capacity (p<0.0001), less physical activity on low to moderate intensity the past 6 months (p<0.016) and less exercise on moderate to high intensity the past year (p=0.022) compared to those with no-mild lung disease. There was no difference between the two subgroups when it comes to the mental component in SF-36 (p=0.2), however patients with moderate-endstage lung disease had lower scores on the subscales vitality ((p=0.003), social function (p=0.002) and emotional role function (p=0.005) as well as higher scores on the HADs depressive symptoms scale (p=0.024), than the patients with no-mild lung disease.Conclusion:Patients with SSc with moderate-endstage lung disease report more disability, lower physical capacity and activity, are more depressed and the physical aspects of quality of life is lower, as well as vitality, social function and emotional role function, compared to patients with no-mild lung disease. Studies evaluating whether increased physical activity and exercise may improve depressive symptoms and aspects of quality of life in patients with moderate-endstage lung disease are needed.References:[1]Liem SIE, Meessen JMTA, Wolterbeek R, Ajmone Marsan N, Ninaber MK, Vliet Vlieland TPM, de Vries-Bouwstra JK. Physical activity in patients with systemic sclerosis. Rheumatol Int. 2018;38:443-453[2]March C, Huscher D, Preis E, Makowka A, Hoeppner J, Buttgereit F, Riemekasten G, Norman K, Siegert E. Prevalence, Risk Factors and Assessment of Depressive Symptoms in Patients With Systemic Sclerosis. Arch Rheumatol. 2019;28;34:253-261Acknowledgments:Thanks to the patients involved in the study, patient research partner Monica Holmnér and the staff at the rheumatological clinic, Karolinska University HospitalDisclosure of Interests:None declared
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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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