POS1522-HPR COMPARISON OF EDUCATIONAL NEEDS AMONG PATIENTS WITH ANCA ASSOCIATED VASCULITIS AND SYSTEMIC LUPUS ERYTHEMATOSUS – A PILOT STUDY USING THE EDUCATIONAL NEEDS ASSESSMENT TOOL.

Abstract

BackgroundPatients 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.