From the Department of Medicine, Division of Rheumatology.
Department of Biostatistics, School of Public Health.
J Clin Rheumatol. 2020 Dec;26(8):320-326. doi: 10.1097/RHU.0000000000001126.
Management guidelines have identified unmet educational needs in gout patients. Our objective was to develop and pilot test MyGoutCare (MGC©)-a web-based, interactive educational resource for gout patients, tailored to improve knowledge.
The website was developed with input from patients and experts. A health informatics expert tailored content areas so the patient could walk through a journey to learn various aspects of gout. During the pilot study, patients completed baseline demographics and a 10-item validated gout knowledge questionnaire. After reviewing the website, patients completed a post-survey within 2 weeks of their physician visit. Data were analyzed using paired t-tests and effect size (ES) was calculated for the changed scores.
Gout patients and experts agreed on these content areas-triggers of flares, comorbidities, pharmacologic and non-pharmacologic treatment, healthy gout diet, and lifestyle choices. In the pilot study, 50 patients (mean age of 54 years, mean disease duration of 9.5 years, and mean 3-5 flares/year) were recruited. Their post-survey scores (0-10) on knowledge questions improved significantly when compared to pre-survey scores with mean (SD) of 1.95 (1.76) p < 0.0001, ES = 0.95. Patients identified actionable changes moving forward after reviewing the website-decision to continue lifelong urate-lowering therapy, complying with periodic monitoring of serum urate, and making dietary changes.
Web-based platforms that offer patient-focused materials can serve as a practical tool to address ongoing educational needs of gout patients. Additional studies are needed to evaluate if the website can improve patient-physician communication and lead to better long-term outcomes.
管理指南已经确定了痛风患者存在未满足的教育需求。我们的目标是开发和试点测试 MyGoutCare（MGC©）-一个针对痛风患者的基于网络的交互式教育资源，旨在提高知识水平。
该网站是在患者和专家的投入下开发的。健康信息学专家针对特定内容领域进行了调整，以便患者可以逐步了解痛风的各个方面。在试点研究中，患者在就诊前完成了基线人口统计学和 10 项经验证的痛风知识问卷。在查看网站后，患者在就诊后两周内完成了在线调查。使用配对 t 检验和效应量（ES）分析数据，并计算了变化分数的 ES。
痛风患者和专家都同意这些内容领域-发作诱因、合并症、药物和非药物治疗、健康的痛风饮食和生活方式选择。在试点研究中，招募了 50 名患者（平均年龄 54 岁，平均病程 9.5 年，平均每年发作 3-5 次）。与预调查相比，他们在知识问题上的后调查得分（0-10）显著提高，平均（SD）为 1.95（1.76），p < 0.0001，ES = 0.95。患者在查看网站后确定了未来可采取的行动改变-决定继续进行终身尿酸降低治疗、定期监测血清尿酸、并改变饮食。
提供以患者为中心的材料的基于网络的平台可以作为满足痛风患者持续教育需求的实用工具。需要进一步的研究来评估该网站是否可以改善医患沟通并带来更好的长期结果。
