Quality assessment of the therapeutic health information of rare neurological diseases on WeChat official account

LIU Li-li; LAI Xue-feng; LIU Tan-xin; HE Bing-jie; ZHOU Jiang-jie; WANG Sheng-feng; ZHAN Si-yan

doi:10.16462/j.cnki.zhjbkz.2020.11.015

Volume 24 Issue 11

Dec. 2020

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Article Navigation > CHINESE JOURNAL OF DISEASE CONTROL & PREVENTION > 2020 > 24(11): 1321-1326

LIU Li-li, LAI Xue-feng, LIU Tan-xin, HE Bing-jie, ZHOU Jiang-jie, WANG Sheng-feng, ZHAN Si-yan. Quality assessment of the therapeutic health information of rare neurological diseases on WeChat official account[J]. CHINESE JOURNAL OF DISEASE CONTROL & PREVENTION, 2020, 24(11): 1321-1326. doi: 10.16462/j.cnki.zhjbkz.2020.11.015

Citation:

LIU Li-li, LAI Xue-feng, LIU Tan-xin, HE Bing-jie, ZHOU Jiang-jie, WANG Sheng-feng, ZHAN Si-yan. Quality assessment of the therapeutic health information of rare neurological diseases on WeChat official account[J]. CHINESE JOURNAL OF DISEASE CONTROL & PREVENTION, 2020, 24(11): 1321-1326. doi: 10.16462/j.cnki.zhjbkz.2020.11.015

Citation:

LIU Li-li, LAI Xue-feng, LIU Tan-xin, HE Bing-jie, ZHOU Jiang-jie, WANG Sheng-feng, ZHAN Si-yan. Quality assessment of the therapeutic health information of rare neurological diseases on WeChat official account[J]. CHINESE JOURNAL OF DISEASE CONTROL & PREVENTION, 2020, 24(11): 1321-1326. doi: 10.16462/j.cnki.zhjbkz.2020.11.015

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Quality assessment of the therapeutic health information of rare neurological diseases on WeChat official account

doi: 10.16462/j.cnki.zhjbkz.2020.11.015

1.
Department of Epidemiology and Biostatistics, School of Public Health, Peking University Health Science Center, Beijing 100191, China
2.
The School of Health Humanities, Peking University Health Science Center, Beijing 100191, China
3.
School of Public Health, Peking University Health Science Center, Beijing 100191, China
4.
Research Center of Clinical Epidemiology, Peking University Third Hospital, Beijing 100191, China

Funds:

Major Research Plan of the National Natural Science Foundation of China 91646107

More Information

Corresponding author: WANG Sheng-feng, E-mail:shengfeng1984@126.com
Received Date: 2020-05-29
Rev Recd Date: 2020-08-14
Publish Date: 2020-11-10

Abstract

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.
- Rare neurological disease,
- WeChat official account,
- Information quality

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References(27)

References

[1]	Fisher JH, O'Connor D, Flexman AM, et al. Accuracy and reliability of internet resources for information on idiopathic pulmonary fibrosis[J]. Am J Respir Crit Care Med, 2016, 2(194):218-225. DOI: 10.1164/rccm.201512-2393OC.
[2]	Pauer F, Litzkendorf S, Göbel J, et al. Rare diseases on the internet: an assessment of the quality of online information[J]. J Med Internet Res, 2017, 1(19):e23. DOI: 10.2196/jmir.7056.
[3]	Aaronson NL, Castaño JE, Simons JP, et al. Quality, readability, and trends for websites on ankyloglossia[J]. Ann Otol Rhinol Laryngol, 2018, 127(7):439-444. DOI: 10.1177/0003489418776343.
[4]	San Giorgi MRM, de Groot OSD, Dikkers FG. Quality and readability assessment of websites related to recurrent respiratory papillomatosis[J]. Laryngoscope, 2017, 127(10):2293-2297. DOI: 10.1002/lary.26521.
[5]	Fioretti BT, Reiter M, Betrán AP, et al. Googling caesarean section: a survey on the quality of the information available on the Internet[J]. BJOG, 2015, 122:731-739. DOI: 10.1111/1471-0528.13081.
[6]	柏小寅, 张永伟, 李骥, 等.我国克罗恩病相关互联网医学科普信息质量评估和可读性初析[J].中华炎性肠病杂志, 2018, 2(2):102-107. DOI:10.3760/cma.j.issn.2096-367X. Bai XY, Zhang YW, Li J, et al. Evaluation of the quality and readability of disease information about Crohn's disease from Internet in Chinese[J]. Chin J Inflamm Bowel Dis, 2018, 2(2):102-107. DOI: 10.3760/cma.j.issn.2096-367X.2018.02.007.
[7]	朱晨, 刘雨晨, 宗婷, 等.慢性肾病相关健康类中文网站信息质量评价[J].中国实用护理杂志, 2018, 5(34):342-346. DOI: 10.3760/cma.j.issn.1672-7088.2018.05.005. Zhu C, Liu YC, Zong T, et al. Quality evaluation of Chinese online chronic kidney information[J]. Chin J Prac Nurs, 2018, 5(34):342-346. DOI: 10.3760/cma.j.issn.1672-7088.2018.05.005.
[8]	Matilla-Dueñas A, Corral-Juan M, Rodríguez-Palmero Seuma A, et al. Rare neurodegenerative diseases: clinical and genetic update[J]. Adv Exp Med Biol, 2017, 1031:443-496. DOI: 10.1007/978-3-319-67144-4_25.
[9]	张爱丽, 肖亦爽, 李静, 等.基于Orphanet数据库对我国罕见病神经系统表现分类的研究[J].实用医学杂志, 2018, 4(34):600-603, 617. DOI: 10.3969/j.issn.1006-5725.2018.04.019. Zhang AL, Xiao YS, Li J, et al. A study on classification of nervous system symptoms of rare diseases in China by adopting method in Orphanet database[J]. The J Pract Med, 2018, 4(34):600-603, 617. DOI: 10.3969/j.issn.1006-5725.2018.04.019.
[10]	Crowther LM, Poms M, Plecko B. Multiomics tools for the diagnosis and treatment of rare neurological disease[J]. J Inherit Metab Dis, 2018, 41(3):425-434. DOI: 10.1007/s10545-018-0154-7.
[11]	Synnot AJ, Hill SJ, Garner KA, et al. Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health[J]. Health Expect, 2016, 19(3):727-737. DOI: 10.1111/hex.12253.
[12]	Mozafarpour S, Norris B, Borin J, et al. Assessment of readability, quality and popularity of online information on ureteral stents[J]. World J Urol, 2018, 36(6):985-992. DOI: 10.1007/s00345-018-2179-9.
[13]	徐晓宇.从传播学角度解构微信的信息传播模式[J].新媒体研究, 2016, 21(2):28-29. DOI: 10.3969/j.issn.1671-7597.2016.21.015. Xu XY. The information communication model of WeChat from a perspective on communication[J]. New Media Research, 2016, 21(2):28-29. DOI: 10.3969/j.issn.1671-7597.2016.21.015.
[14]	张睿.基于微信公众平台的健康信息推送服务[J].中华医学图书情报杂志, 2015, (5):28-30, 34. DOI: 10.3969/j.issn.1671-3982.2015.05.006. Zhang R. WeChat public platform-based health information push service[J]. Chin J of Med Libr Info Sci, 2015, (5):28-30, 34. DOI:10.3969/j.issn.1671-3982.2015. 05.006.
[15]	石鑫淼, 刘徽, 王琳, 等.基于中国1500万余例次住院病例的121种罕见病现况分析[J].中华医学杂志, 2018, 40(98):3274-3278. DOI: 10.3760/cma.j.issn.0376-2491.2018.40.012. Shi XM, Liu W, Wang L, et al. Study on the current situation of China's first list of rare diseases based on 15 million hospitalizations[J]. Natl Med J China, 2018, 40(98):3274-3278. DOI: 10.3760/cma.j.issn.0376-2491.2018.40.012.
[16]	刘立立, 赖雪峰, 许璐, 等.基于微信公众号的罕见病健康信息环境的现况调查[J].中华流行病学杂志, 2020, 3(41):470-475. DOI: 10.3760/cma.j.jssn.0254-6450.2020.03.000. Liu LL, Lai XF, Xu L, et al. A cross-sectional study on current status of rare disease related health information based on WeChat official accounts in China[J]. Chin J Epidemiol, 2020, 3(41):470-475. DOI: 10.3760/cma.j.jssn.0254-6450.2020.03.000.
[17]	Ved R, Cobbold N, Igbagiri K, et al. Online patient information on vagus nerve stimulation: how reliable is it for facilitating shared decision making?[J]. Seizure, 2017, 50:125-129. DOI: 10.1016/j.seizure.2017.06.009.
[18]	Charnock D, Shepperd S, Needham G, et al. DISCERN: an instrument for judging the quality of written consumer health information on treatment choices[J]. J Epidemiol Community Health, 1999;53(2):105-111. DOI: 10.1136/jech.53.2.105.
[19]	Shrout PE. Measurement reliability and agreement in psychiatry[J]. Stat Methods Med Res, 1998, 7(3):301-317. DOI: 10.1177/096228029800700306.
[20]	张艳萍.科技期刊的微信公众号运营模式研究--基于4种核心科技期刊的量化分析[J].中国科技期刊研究, 2015, 5(26):524-531. DOI: 10.11946/cjstp.201411051071. Zhang YP. Research on the operation mode of scientifc journals' Wechat public number: quantitative research on the four kinds of core scientifc journals[J]. Chinese Journal of Scientific and Technical Periodicals, 2015, 5(26) 524-531. DOI: 10.11946/cjstp.201411051071.
[21]	张克永, 李贺.健康微信公众平台信息质量评价指标体系研究[J].情报科学, 2017:11(35):143-148, 155. DOI: 10.13833/j.cnki.is.2017.11.027. Zhang KY, Li H. Research on the evaluation system of health information quality in WeChat public platform[J]. Inf Sci, 2017:11(35):143-148, 155. DOI: 10.13833/j.cnki.is.2017.11.027.
[22]	Gu D, Yang X, Li X, et al. Understanding the role of mobile Internet-based health services on patient satisfaction and word-of-mouth[J]. Int J Environ Res Public Health, 2018, 15(9):1972. DOI: 10.3390/ijerph15091972.
[23]	Wootten AC, Abbott JA, Meyer D, et al. Preliminary results of a randomised controlled trial of an online psychological intervention to reduce distress in men treated for localised prostate cancer[J]. Eur Urol, 2015, 68(3):471-479. DOI: 10.1016/j.eururo.2014.10.024.
[24]	Anderson M, Elliott EJ, Zurynski YA. Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support[J]. Orphanet J Rare Dis, 2013, 8:22. DOI: 10.1186/1750-1172-8-22.
[25]	Pelentsov LJ, Fielder AL, Laws TA, et al. The supportive care needs of parents with a child with a rare disease: results of an online survey[J]. BMC Fam Pract, 2016, 17:88. DOI: 10.1186/s12875-016-0488-x.
[26]	Pauer F, Schmidt K, Babac A, et al. Comparison of different approaches applied in analytic hierarchy process - an example of information needs of patients with rare diseases[J]. BMC Med Inform Decis Mak, 2016, 16(1):117. DOI: 10.1186/s12911-016-0346-8.
[27]	李宗富, 张向先.政务微信公众号服务质量的关键影响因素识别与分析[J].图书情报工作, 2016, 14(60):84-93. DOI: 10.13266/j.issn.0252-3116.2016.14.010. Li ZF, Zhang XX. An analysis on the critical influencing factors of the service quality of government WeChat official accounts[J]. Library and Information Service, 2016, 14(60):84-93. DOI: 10.13266/j.issn.0252-3116.2016.14.010.