Background/Purpose: Internet-based information is important for patients and their caregivers. For the past 4 years, our academic medical center’s Center for Scleroderma, Vasculitis & Myositis (SVM) has produced monthly email NewsBlasts to provide information to our patients and their caregivers. The Newsblasts are distributed by email free of charge to subscribers. We conducted a survey evaluating what information is most important to our subscribers, and we compared responses from patients and caregivers. Additionally, we queried caregivers as to what they thought patients would perceive as most valuable, and compared those responses to patient’s self-reported perceptions.

Methods: All SVM NewsBlasts were placed into 2 broad categories, and then into 1 of 6 sub-categories. NewsBlasts were categorized as Disease-Focused or Psychosocial-Focused. Within the Disease-Focused category were the following sub-categories: Organ System Complications & Mechanisms of Disease, Treatment, and Disease-Related Research. Within the Psychosocial-Focused category were the following sub-categories: Healthcare Access & Delivery, Patient Support, and Self Help / Lifestyle. A survey was created, in which users ranked the sub-categories from 1 (most important) to 6 (least important). Also, all caregivers – rheumatologists, nurses, social workers, and friends and family – were required to rank how important they thought each sub-category was to their patients or relative. The rankings submitted by patients and those submitted by Physicians were compared using Wilcoxon tests.

Results: The survey was sent via email to our 476 subscribers. A total of 177 (37%) recipients opened the email, and 77 (44% of opens, 16% overall) clicked the survey link. Of those recipients that opened the link, 53 responses were complete and included in the analysis. The respondent demographics are as follows: 32/53 (60%) patients; 13/53 (25%) rheumatologists; 3/53 (6%) nurses and social workers; 5/53 (9%) friends and family.

On average, patients assigned the Disease-Focused category a rank of 2.75±0.75, compared to a rank of 4.25±0.75 for the Psychosocial-Focused category (p <0.0001). However, rheumatologists predicted that patients would rank Psychosocial-Focused information as more important than Disease-Focused information (3.33±0.62 vs. 3.67±0.62, p=0.05). Rheumatologists predicted that patients would assign the Disease-Focused category a rank of 3.67±0.62, while patients themselves assigned the Disease-Focused category a rank of 2.75±0.75 (p=0.002). Caregivers overall, when including nurses, social workers, friends and family in addition to rheumatologists, lacked consensus when ranking the relative importance of Disease-Focused and Psychosocial-Focused information. No single sub-category was ranked as significantly more or less important by respondents.

Conclusion: Patients found Disease-Focused information to be most important. Rheumatologists wrongly thought that patients would rank Psychosocial-Focused information as most important. These results emphasize the importance of patient feedback regarding what information is deemed of most value when selecting and developing content for future patient education materials.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-and-physician-perspectives-on-content-value-for-educational-material-regarding-rare-rheumatic-diseases/