Purpose The aim of the study was to compare educational needs among the systemic inflammatory diseases, Systemic lupus erythematosus (SLE) and ANCA associated vasculitis (AAV) using the Educational Needs Assessment Tool (ENAT).
Method This pilot study included cross-sectional data from two separate cohorts, SLE and AVV, from the Karolinska University Hospital, Sweden. Inclusion criteria were minimum age of 18 years and literate in Swedish. Exclusion criterion was cognitive impairment interfering with literate capabilities. Participants with SLE and AAV respectively were individually matched for disease duration, sex, and education.
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 are presented as ‘mean% of the domain score’ (from 0 = no to 100 = highest). For comparisons paired samples t-test were used.
Results Twenty-six matched pairs (89% female), mean (SD) disease duration 6.1 (8.4) years, were included. The mean age was 44 (13.1) years for SLE and 58.5 (16.2) years for AAV (p=0.003). Educational length was reported as mean 14.9 (3.3) years among SLE patients and 12.8 (2.7) years among AAV patients (p=0.1).
Among all patients, the mean total ENAT was generally high 59.9% (range 12.8–100%) and did not differ between the two diseases (p = 0.1) (Table 1). The highest education need in SLE, were ‘Self-management’ (76.1%) and the ‘Disease process’ (71.2%), and lowest educational need in SLE were found in the domains ‘Movement’ (mean 42.8%) and ‘Treatments’ (mean 45.8%). Patients with SLE reported a lower educational need compared to AAV, statistically significantly in three of the domains, ‘Treatments’ (74.3% vs. 45.8%, p = 0.01), ‘Disease process’ (84.0% vs. 71.2%, p = 0.04) and ‘Feelings’ (71.9% vs. 54.2%, p = 0.05).
Conclusions In this pilot study with SLE and AAV, educational needs regarding ‘Treatments’, ‘Disease process’ and ‘Feelings’ were lower in SLE compared to AAV, despite that the participants were matched for disease duration and sex, two variables previously found to be indicators of increased educational needs. Although, this study indicated lower needs in SLE compared to AAV, significant patient educational needs were identified among SLE especially concerning self-management and disease process. If other factors such as age play a role in the educational need must be explored in a larger sample with more variations in age among the participants. However, the results indicates that healthcare providers must further develop their support activities to help patients manage life with SLE based on these expressed needs.
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