S. Subdar, HBSc, University of Toronto, Toronto, Ontario.
A.M. Hoens, PT, MSc, Arthritis Research Canada, and Department of Physical Therapy, University of British Columbia, Vancouver, British Columbia.
J Rheumatol. 2024 Jun 1;51(6):577-586. doi: 10.3899/jrheum.2023-1025.
To conduct an environmental scan and appraisal of online patient resources to support rheumatoid arthritis (RA) flare self-management.
We used the Google search engine (last search March 2023) using the terms "rheumatoid arthritis" and "flare management." Additional searches targeted major arthritis organizations, as well as regional, national, and international resources. Appraisal of the resources was conducted by 2 research team members and 1 patient partner to assess the understandability and actionability of the resource using the Patient Education Materials Assessment Tool (PEMAT). Resources rating ≥ 60% in both domains by either the research team or the patient partner were further considered for content review. During content review, resources were excluded if they contained product advertisements, inaccurate information, or use of noninclusive language. If content review criteria were met, resources were designated as "highly recommended" if both patient partners and researchers' PEMAT ratings were ≥ 60%. If PEMAT ratings were divergent and had a rating ≥ 60% from only 1 group of reviewers, the resource was designated "acceptable."
We identified 44 resources; 12 were excluded as they did not pass the PEMAT assessment. Fourteen resources received ratings ≥ 60% on understandability and actionability from both researchers and patient partners; 10 of these were retained following content review as "highly recommended" flare resources. Of the 18 divergent PEMAT ratings, 8 resources were retained as "acceptable" following content review.
There is high variability in the actionability and understandability of online RA flare materials; only 23% of resources were highly recommended by researchers and patient partners.
对在线患者资源进行环境扫描和评估,以支持类风湿关节炎(RA)发作的自我管理。
我们使用谷歌搜索引擎(最后一次搜索时间为 2023 年 3 月),使用术语“类风湿关节炎”和“发作管理”。还针对主要的关节炎组织以及区域、国家和国际资源进行了额外的搜索。由 2 名研究团队成员和 1 名患者合作伙伴对资源进行评估,使用患者教育材料评估工具(PEMAT)评估资源的可理解性和可操作性。如果研究团队或患者合作伙伴中任何一方对资源的这两个领域的评分均≥60%,则认为该资源进一步进行内容审查。在内容审查过程中,如果资源包含产品广告、不准确的信息或使用非包容性语言,则将其排除在外。如果符合内容审查标准,并且患者合作伙伴和研究人员的 PEMAT 评分均≥60%,则将资源指定为“强烈推荐”。如果 PEMAT 评分存在分歧,并且只有一方的评分≥60%,则将资源指定为“可接受”。
我们确定了 44 种资源;其中 12 种因未通过 PEMAT 评估而被排除在外。14 种资源在可理解性和可操作性方面均获得了研究人员和患者合作伙伴的评分≥60%;在内容审查后,其中 10 种资源被保留为“强烈推荐”的发作资源。在 18 个存在分歧的 PEMAT 评分中,有 8 种资源在内容审查后被保留为“可接受”。
在线 RA 发作材料的可操作性和可理解性差异很大;只有 23%的资源得到了研究人员和患者合作伙伴的高度推荐。