School of Nursing, Jinan University, Guangzhou, China.
Department of Social Medicine of School of Public Health, Zhejiang University, Hangzhou, China.
J Med Internet Res. 2023 Feb 2;25:e39325. doi: 10.2196/39325.
The diabetes disease burden in China is heavy, and medical standards such as diabetes guidelines are the core reference guidelines for diabetes management for health care providers and patients. However, patients' guideline compliance is too low, which correlates with the gap between guidelines and patients' self-management needs. Incorporating patient needs into the guideline development would reduce this gap.
We sought to capture the needs of patients with diabetes for self-management in everyday situations and to clarify the contradictions and misalignments between medical standards, such as guidelines, and patient needs.
This study collected crawler-based data from 4 online health communities. We selected 1605 text records collected from Chinese patients with diabetes between March 2020 and July 2020 for analysis. The text analysis applied grounded theory to separate issues that concerned patients into 3 themes, 7 subthemes, and 25 entries.
Altogether, 69.03% (1108/1605) of texts were related to issues concerning disease treatment (theme B) and mainly inquired about medication use (B2 and B3; 686/1108, 61.91%), including medication choice, change in medication administration, side effects, and postmedication effects. In addition, 222 (N=1605, 13.8%) texts (theme A) concerned the explanation of disease etiology and knowledge of diabetes, and 275 (N=1605, 17.1%) texts (theme C) discussed lifestyle changes and various restrictions on life brought about by the disease.
Our findings suggest an urgent need to improve diabetes health education and guideline development strategies and to develop health management strategies from a patient perspective to bridge the misalignment between patient needs and current medical standards.
中国的糖尿病疾病负担沉重,医学标准(如糖尿病指南)是医疗保健提供者和患者管理糖尿病的核心参考指南。然而,患者的指南依从性太低,这与指南和患者自我管理需求之间的差距有关。将患者需求纳入指南制定中可以缩小这一差距。
我们旨在了解糖尿病患者在日常情况下自我管理的需求,并阐明医学标准(如指南)与患者需求之间的矛盾和不匹配。
本研究从 4 个在线健康社区中收集基于爬虫的数据。我们选择了 2020 年 3 月至 7 月期间 1605 份来自中国糖尿病患者的文本记录进行分析。文本分析采用扎根理论将患者关心的问题分为 3 个主题、7 个子主题和 25 个条目。
共有 69.03%(1108/1605)的文本与疾病治疗问题(主题 B)有关,主要涉及药物使用(B2 和 B3;686/1108,61.91%),包括药物选择、药物管理方式改变、副作用和用药后效果。此外,222 份(N=1605,13.8%)文本(主题 A)涉及疾病病因和糖尿病知识的解释,275 份(N=1605,17.1%)文本(主题 C)讨论了生活方式的改变以及疾病带来的各种生活限制。
我们的研究结果表明,迫切需要改进糖尿病健康教育和指南制定策略,并从患者角度制定健康管理策略,以弥合患者需求与现有医学标准之间的差距。