378. The need for information among patients with AAV differs between groups
Creators: name: Brolin1, Sara
Publisher: name: Zenodo
Year: 2022
Subjects: Vasculitis
ANCA
Abstracts
Giant Cell Arthritis
MPA
GPA
EGPA
Takayasu
IgA vasculitis

description: <strong>Background/ Objectives</strong>: Being diagnosed with ANCA associated vasculitis (AAV) can be a stressful experience that requires an individual to adapt to new situations. Patients that are provided adequate information are better equipped to make well informed decisions regarding their care and thereby stay compliant to the treatment plan. To provide adequate patient-centered information at the appropriate time and to identify those who may need extra support, the information needs to be explored. There have been several studies on the information needs of various rheumatological patient groups, although very few studies for patients with AAV. The aim of this study was to explore what information patients with AAV need from their rheumatological team. <strong>Methods:</strong> Cross-sectional data was collected between 2008 and 2019 from a cohort of patients over 18 years at a Rheumatology Clinic in Sweden. Patients with different forms of AAV (GPA, MPA and EGPA), that were seen by the Rheumatology clinic as primary contact, were included. At inclusion, participants were asked to fill in questionnaires including the Educational Needs Assessment Tool (ENAT) that measures the patient's information needs. The initial question, ‘Do you need information right now about something that can help you with your rheumatic disease?’ is answered yes/no. ENAT then includes 7 domains (Managing pain, Movement, Feelings, Disease process, Treatments, Self-help measures and Support systems) each containing 4-7 items (4-point Likert scale, ’not at all important = 0’ to ‘extremely important = 3’). The total sum is divided by the maximum score and gives the percentage response of maximum score (0-100%), 0% meaning no information need and 100% highest information need. The responses are presented as “mean % of the domain score”. Independent-sample t-test and one-way ANOVA were used to compare means between groups based on gender, age, social status, disease, disease duration and disease activity. <strong>Results:</strong> 178 individuals completed the questionnaire, equally divided by gender. Age ranged from 18-85, median 61, and 33.7% had been diagnosed within 2 years. The mean ENAT total score was 56.8% (range 0-100%). The highest information need was found in the domains ‘Disease process’ (78.1%), ‘Self-help measures’ (68.5%) and ‘Treatments’ (63.6%) whereas lesser need for information was found in the domains ‘Managing pain’ (47.5%), ‘Support systems’ (46.5%) and ‘Movement’ (41.1%). The domain ‘Feelings’ was scored as moderate (55.5%). Patients who acknowledged a present information need scored significantly overall higher in all the domains. Disease duration and gender were shown to significantly affect the information need where the highest scores were found among females and among those with disease duration &lt; 2 years with significant difference in 3/7 domains (all <em>p = &lt;0.05</em>). Age, disease activity, diagnosis and social status did not affect the ENAT scores. <strong>Conclusions:</strong> Even though only 38% of participants stated a current need for information, the results indicate that patients with AAV need more information about ‘Disease process’, ‘Self-help measures’ and ‘Treatments’. Special consideration needs to be taken to females and patients with short disease duration who reported a significantly higher need for information. <strong>Disclosures: </strong>None