Quality assessment of the therapeutic health information of rare neurological diseases on WeChat official account
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摘要:
目的 评价基于微信公众号的神经系统罕见病相关治疗信息的质量。 方法 查询7种神经系统罕见疾病的微信公众号，筛选后等比例随机抽取其中的治疗类文章，使用DISCERN量表双人独立评估，以二者平均分作为最终质量评价指标，并进一步探索文章质量影响因素。 结果 共纳入来自28个公众号的173篇文章，公众号运营主体中医疗团体数量最多(50.29%)，文章涉及的疾病以肌萎缩侧索硬化为主(82.66%)，而涉及的治疗形式集中在常规护理支持(49.71%)。治疗类文章的整体信息质量较差，DISCERN评价分值为(30.27±7.20)分，“差”与“极差”占比达到86.70%，而“良”仅有3篇(1.73%)，无“优”等级文章，大部分文章未提供完整赞助方及引用信息、不治疗后果以及共同决策等信息。 结论 我国基于微信公众号的神经系统罕见病相关治疗信息在可信度和详尽度方面质量均较低，未来应重点加强对引用信息、不同治疗方法比较等关键点的把控，以确保信息完整。 Abstract:Objective To assess the quality of online health information about rare neurological diseases on the WeChat official account in China. Methods We screened the WeChat official accounts about seven rare neurological diseases, and all existing articles in them were selected. The articles related to the treatment were then included using proportional random sampling. The quality was assessed independently by two well-trained reviewers using the DISCERN. The mean scores of the two observers were used as the final score to assess quality and to further explore the influencing factors for quality. Results A total of 28 WeChat official accounts and 173 articles were included for analysis. Medical groups posted most of the articles (50.29%), amyotrophic lateral sclerosis was the most frequently discussed disease (82.66%), and the treatment type of articles mainly focused on the nursing support (49.71%). The whole quality was poor, with a low average score of 30.27±7.20. Most of the articles (86.70%) were graded in the "poor" and the "worst", only 3 (1.73%) articles were in the "good", and no "excellent" articles existed. Most articles did not provide complete sponsor and citation resources, the consequence without treatment, and the co-determination information. Conclusions For rare neurological diseases, the quality of health information on the WeChat official account in China was poor based on the credibility and circumstantiality. Future work should strengthen the quality management of key information, such as citation resources and the comparison information between advantages and disadvantages of different treatments, to further ensure the accuracy of therapeutic health information. -
Key words:
- Rare neurological disease /
- WeChat official account /
- Information quality
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表 1 公众号基本信息
Table 1. Basic information of WeChat official accounts
公众号名称 建立时间(年.月) 末更间隔时间(月)a 发文频率(篇/月) 北京蝴蝶结罕见病关爱中心 2012.12 0.7 4.1 渐冻人关爱在线 2014.06 1.1 4.8 北区ALS渐冻人 2015.02 13.9 3.7 陕西久盈康罕见病关爱中心 2015.04 14.8 3.1 陕西省渐冻人关爱互助协会 2015.06 0.4 5.6 ALS渐冻人 2015.06 38.7 10.4 苏皖ALS渐冻人关爱之家 2015.09 31.8 12.0 北京渐冻人ALS关爱之家 2015.11 33.0 8.6 解冻专家 2016.01 0.1 9.9 ALS渐冻人温暖之家 2016.03 36.2 39.0 美儿SMA关爱中心 2016.03 0.5 11.4 渐冻人 2016.04 0.0 17.1 河北以岭医院肌萎缩科 2016.06 0.2 12.4 MDbaby关爱中心 2016.06 30.8 10.3 神经晓光 2016.07 0.2 3.8 运动神经元病互助家园 2016.08 0.6 2.5 运动神经元病科普中心 2016.12 19.6 11.0 蒲公英渐冻人罕见病关爱中心 2017.07 2.0 2.6 运动神经元病咨询平台 2017.08 10.2 26.7 CMT关爱中心 2017.08 0.0 6.7 中国医师协会融化渐冻的心 2017.11 0.0 12.4 痉挛性截瘫专家组 2017.11 6.6 25.0 华西商教授团队工作室 2018.04 0.2 8.5 结节性硬化后援站 2018.05 9.1 34.0 荆楚渐冻人之家 2018.07 2.7 11.3 进行性肌营养不良 2018.09 0.1 35.7 渐冻人ALS家园 2019.01 0.0 16.7 运动神经元咨询处 2019.02 0.1 58.0 注：a末更间隔时间(月)：表示公众号检索日期与最后一次更新文章日期之间的间隔。 
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表 2 7种神经系统罕见病公众号文章基本情况[n(%)]
Table 2. Basic information of articles in WeChat official accounts of seven neurological rare diseases [n(%)]
变量 文章数量 文章关注疾病名称 肌萎缩侧索硬化 143(82.66) 脊髓性肌萎缩症 9(5.20) 进行性肌营养不良 7(4.05) 结节性硬化症 6(3.47) 遗传性痉挛性截瘫 4(2.31) 腓骨肌萎缩症 4(2.31) 青年型帕金森病 0(0.00) 公众号运营主体 西医团体 63(36.42) 患者个人 40(23.12) 公益机构 34(19.65) 中医团体 24(13.87) 商业公司 12(6.94) 文章介绍治疗形式 常规护理支持 86(49.71) 综合治疗 29(16.76) 传统中医治疗 23(13.29) 功能锻炼指导 13(7.69) 药物治疗 13(7.69) 心理干预治疗 9(5.20)
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表 3 文章DISCERN评价总分分级(x±s)
Table 3. Grades for DISCERN scores of articles (x±s)
等级 例数(%) DISCERN评分 95% CI值 优 0(0.00) 良 3(1.73) 53.33±1.45 47.08~59.58 中 20(11.56) 42.55±0.71 41.06~44.04 差 86(49.71) 31.63±0.34 30.96~32.30 很差 64(36.99) 23.53±0.22 23.09~23.97
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表 4 DISCERN评价中各条目得分情况
Table 4. Mean scores of each item in DISCERN
问题 平行评价一致性(组内相关系数) x (95% CI)值 信息内容可靠程度(1~8) 2.09(1.56~2.62) 1.文章目标是否清晰？ 0.79 3.10(2.95~3.26) 2.文章内容是否达到设定目标？ 0.72 2.52(2.40~2.64) 3.文章内容是否与患者需求相关？ 0.66 2.66(2.52~2.80) 4.除提供作者或生产者外，文章内容信息来源是否清晰？ 0.78 1.81(1.67~1.96) 5.是否清晰说明文章中使用或报告具体信息来源何时产生？ 0.92 2.13(2.06~2.22) 6.文章是否客观公正？ 0.77 1.66(1.55~1.78) 7.文章是否提供赞助方及引用信息等细节？ 0.80 1.21(1.14~1.28) 8.文章是否提到尚未明确的部分？ 0.85 1.61(1.48~1.75) 治疗信息细节(9~15) 1.69(1.45~1.94) 9.文章是否描述了每种治疗方案如何起效？ 0.63 1.80(1.69~1.91) 10.文章是否描述了提到的每种疗法的益处？ 0.65 2.15(2.00~2.31) 11.文章是否描述了每种疗法的风险？ 0.93 1.45(1.32~1.57) 12.文章是否描述了若不进行治疗可能后果？ 0.73 1.27(1.18~1.37) 13.文章是否描述了治疗选择如何影响生活质量？ 0.74 1.92(1.78~2.06) 14.是否清晰陈述除某种合适的治疗选择外，还存在其他方案的可能性？ 0.71 1.73(1.58~1.88) 15.文章是否提供了共同决策的支持？ 0.59 1.44(1.30~1.58) 整体质量(16) 16.基于以上，对文章整体质量进行评价 0.69 1.79(1.30~1.58)
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表 5 不同运营主体和治疗方式文章DISCERN评分情况
Table 5. Comparison of DISCERN scores by affiliations or treatments provided
类别 DISCERN总分 H值 P值 x±s 95% CI值 公众号运营主体 5.192 0.268 公益机构 32.29±7.11 29.81~34.77 患者个人 30.38±6.73 28.22~32.53 西医团体 30.06±8.13 27.97~32.16 商业公司 28.83±6.42 24.75~32.91 中医团体 28.50±4.65 26.54~30.46 文章介绍治疗形式 22.982 < 0.001a 综合治疗 33.45±6.94 30.81~36.09 功能锻炼指导 31.15±5.03 28.11~34.19 药物治疗 31.00±6.72 26.94~35.06 常规护理支持 30.33±7.87 28.64~32.01 传统中医治疗 27.26±5.09 25.06~29.46 心理干预治疗 24.89±3.72 22.11~27.67 注：a：多组比较中，心理干预治疗与常规护理支持P=0.003、药物治疗P < 0.001、功能锻炼指导P < 0.001、综合治疗P < 0.001；传统中医治疗与综合治疗P=0.001。
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