Health information needs of patients with Parkinson's disease across four mainstream online platforms based on web crawler and biterm topic model

ZHU Aoxue; MAO Huina; XIE Huiling; WANG Mei; DENG Qilan

doi:10.16460/j.issn2097-6569.2025.11.020

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Journal of Nursing ›› 2025, Vol. 32 ›› Issue (11) : 20-27. DOI: 10.16460/j.issn2097-6569.2025.11.020

Health information needs of patients with Parkinson's disease across four mainstream online platforms based on web crawler and biterm topic model

ZHU Aoxue^1a,2, MAO Huina^1a, XIE Huiling^1b, WANG Mei^1c, DENG Qilan^1b

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Abstract

Objective To explore the health information needs of patients with Parkinson's disease (PD) across mainstream online platforms, and provide evidence for healthcare professionals to deliver targeted health information services. Methods The texts delivered by patients with PD were obtained by crawler across 4 mainstream online platforms. Python and Biterm Topic Model (BTM) were utilized to mine the health information needs and categorize the topics. Gephi software was employed to generate keyword co-occurrence networks for each topic. Results Topic analysis across mainstream online platforms including Zhihu, Tieba, Xiaohongshu, and Haodaifu identified 3, 4, 5, and 5 topics respectively. Analysis of 32,852 texts from these four platforms yielded the following six categories of health information needs among patients with PD: symptom management (aggravated disease burden due to the "sleep-pain-fatigue" symptom cluster), medication therapy (misconceptions about medication use and non-standardized medication adjustment behaviors), home management (lack of guidance for diet and exercise management), family caregiving (risks of information simplification and reporting distortion in surrogate searching), surgical treatment (unclear preoperative evaluation of indications and postoperative drug-programming coordination), and disease diagnosis (patients seeking online experts due to difficulty in obtaining a definitive diagnosis at the primary care level). Conclusion The health information needs of patients with PD are characterized by multidimensional content and a “patient-family” dual-subject framework, which provides new evidence to support nurses in implementing collaborative, targeted, and comprehensive health information services.

Key words

Parkinson's disease / health information need / web crawler / biterm topic model / mainstream online platforms

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ZHU Aoxue, MAO Huina, XIE Huiling, WANG Mei, DENG Qilan. Health information needs of patients with Parkinson's disease across four mainstream online platforms based on web crawler and biterm topic model[J]. Journal of Nursing. 2025, 32(11): 20-27 https://doi.org/10.16460/j.issn2097-6569.2025.11.020

References

[1] Ben-Shlomo Y, Darweesh S, Llibre-Guerra J, et al.The epidemiology of Parkinson’s disease[J]. Lancet, 2024,403(10423):283-292.DOI:10.1016/S0140-6736(23)01419-8.
[2] 李琴, 万雪莉, 冯金华, 等. 中晚期帕金森病患者社区护理需求影响因素及路径分析[J]. 中国实用护理杂志, 2024,40(22):1689-1698. DOI:10.3760/cma.j.cn211501-20231120-01061.
[3] 中国科学技术协会. 中国网民科普需求搜索行为报告(2019年第一季度)[EB/OL] (2019-04-26)[2024-10-18].http://www.cast.org.cn/sj/zgwmkpxqssxwbg/2019/DYJD/art/2019/rt_b9136f3acbe240cf8c59e83710ffc4d1.html.
[4] Abdelraheem O, Salama M, Chun S.Impact of digital interventions and online health communities in patient activation: systematic review and Meta-analysis[J]. Int J Med Inform, 2024,188:105481.DOI:10.1016/j.ijmedinf.2024.105481.
[5] Marxreiter F, Buttler U, Gassner H, et al.The use of digital technology and media in German Parkinson’s disease patients[J]. J Parkinsons Dis, 2020,10(2):717-727.DOI:10.3233/JPD-191698.
[6] Revercomb L, Patel AM, Choudhry HS, et al.Assessing patient satisfaction following facelifts with social media reviews[J]. Aesthetic Plast Surg, 2024,48(24):5266-5272. DOI:10.1007/s00266-024-04273-x.
[7] Pham JT, Kim JK, Hunt SE, et al.Online patient reviews of breast reconstruction: realself analysis[J]. Plast Reconstr Surg Glob Open,2022,10(11):e4476.DOI:10.1097/GOX.0000000000004476.
[8] 赵洁, 贾君枝, 司莉. 基于社会化问答的用户健康信息需求概念体系构建——以糖尿病为例[J]. 情报理论与实践, 2023, 46(7):150-157.DOI:10.16353/j.cnki.1000-7490.2023.07.018.
[9] 郭赛男,蒋慧萍,王子豪,等.基于潜在狄利克雷分布主题模型的初产妇产后健康信息需求研究[J]. 护理学报, 2024,31(19):19-23.DOI:10.16460/j.issn1008-9969.2024.19.019.
[10] 马誉萁,侯小妮, 段红梅,等.基于LDA主题模型的网络问答社区妊娠合并糖尿病孕产妇健康信息需求分析[J]. 护理学杂志,2023, 38(7):86-89.DOI:10.3870/j.issn.1001-4152.2023.07.086.
[11] 刘烁,陈盼,杨冰香,等.基于知乎抑郁症问答社区的用户健康信息需求分析[J]. 护理研究, 2021,35(13):2273-2279.DOI:10.12102/j.issn.1009-6493.2021.13.003.
[12] 艾芳菊,尹虓寅.融合BTM与TextCNN的文本语义增强主题爬虫研究[J].软件导刊, 2024.
[13] Nimala K, Jebakumar R.A robust user sentiment biterm topic mixture model based on user aggregation strategy to avoid data sparsity for short text[J]. J Med Syst, 2019,43(4):93.DOI:10.1007/s10916-019-1225-5.
[14] Eckhardt CM, Madjarova SJ, Williams RJ, et al.Unsupervised machine learning methods and emerging applications in healthcare[J].Knee Surg Sports Traumatol Arthrosc, 2023,31(2):376-381.DOI:10.1007/s00167-022-07233-7.
[15] Honcharov V, Li J, Sierra M, et al.Public figure vaccination rhetoric and vaccine hesitancy: retrospective twitter analysis[J]. JMIR Infodemiol, 2023,3:e40575.DOI:10.2196/40575.
[16] Zhu J, Li Z, Zhang X, et al.Public attitudes toward anxiety disorder on sina weibo: content analysis[J]. J Med Internet Res, 2023,25:e45777.DOI:10.2196/45777.
[17] van der Eijk M, Faber MJ, Aarts JW, et al. Using online health communities to deliver patient-centered care to people with chronic conditions[J].J Med Internet Res, 2013,15(6):e115.DOI:10.2196/jmir.2476.
[18] Github.Stopwords[EB/OL]. (2015-11-01)[2024-10-18].https://github.com/goto456/stopwords.
[19] 中华医学会神经病学分会帕金森病及运动障碍学组,中国医师协会神经内科医师分会帕金森病及运动障碍学组. 中国帕金森病治疗指南(第四版)[J].中华神经科杂志, 2020, 53(12):973-986.DOI:10.3760/cma.j.cn113694-20200331-00233.
[20] 中华医学会神经病学分会帕金森病及运动障碍学组,中国医师协会神经内科医师分会帕金森病及运动障碍专业. 中国帕金森病的诊断标准(2016版)[J].中华神经科杂志,2016,49(4):268-271.DOI: 10.3760/cma.j.issn.1006-7876.2016.04.002.
[21] 陈汝婕,王毅欣,刘晶晶,等.基于LDA主题分析模型的突发重大传染病事件医院抗逆力建设分析——以上海市为例[J].军事护理,2023,40(4):60-62.DOI:10.3969/j.issn.2097-1826.2023.04.015.
[22] 徐红,张斯婷,李凌方.基于LDA模型与共词分析法的农村阅读推广主题发现与热点分析[J].情报科学,2022,40(10):67-73.DOI:10.13833/j.issn.1007-7634.2022.10.009.
[23] 孙晶. 基于Python的加权K-means聚类算法研究[J].中国新技术新产品,2024(19):1-4.DOI:10.3969/j.issn.1673-9957.2024.19.002.
[24] Lee J, Yeom I, Chung ML, et al.Use of mobile apps for self-care in people with Parkinson disease: systematic review[J]. JMIR Mhealth Uhealth, 2022,10(1):e33944.DOI:10.2196/33944.
[25] 胡桂梅, 陈娟艺, 言欢. 社会化问答平台测评信息特征对用户参与行为的影响研究——以知乎为例[J]. 情报科学, 2024,42(3):139-146.DOI:10.13833/j.issn.1007-7634.2024.03.016.
[26] 李朝阳, 杨芬, 胡婷, 等. 基于百度贴吧“同妻吧”的同妻负性情绪特征及来源分析[J]. 护理学报, 2022,29(7):12-16.DOI:10.16460/j.issn1008-9969.2022.07.012.
[27] 潘伊蕊, 陶欣, 黄蓉. 小红书平台乳腺癌患者疾病叙事主要类型研究[J]. 叙事医学, 2024,7(3):168-173.
[28] Kwok J, Huang TW, Tretriluxana J, et al.Symptom burden and unmet support needs of patients with Parkinson’s disease: a cross-sectional study in Asia-Pacific regions[J]. J Am Med Dir Assoc,2021, 22(6):1255-1264.DOI:10.1016/j.jamda.2020.09.012.
[29] Gao L, Huang W, Cai L, et al.Association between sleep disturbances and pain subtypes in Parkinson’s disease[J].Neurol Sci, 2022,43(8):4785-4790.DOI:10.1007/s10072-022-06030-x.
[30] 殷慧慧,尹安春,张秀杰.帕金森病病人生活质量影响因素的研究进展[J].护理研究,2014(13):1541-1543.DOI:10.3969/j.issn.1009-6493.2014.13.002.
[31] Engels G, Douw L, Kerst Y, et al.Non-motor symptoms in Parkinson’s disease: an explorative network study[J]. Parkinsonism Relat Disord,2019,66:237-240.DOI:10.1016/j.parkreldis.2019.08.002.
[32] Luo A, Xin Z, Yuan Y, et al.Multidimensional feature classification of the health information needs of patients with hypertension in an online health community through analysis of 1000 patient question records: observational study[J]. J Med Internet Res, 2020,22(5):e17349.DOI:10.2196/17349.
[33] 原曼,尹安春,梁战华,等.基于信息-动机-行为技巧模型的个体化用药管理方案在帕金森病患者中的应用[J]. 中国护理管理,2018,18(2):179-184.DOI:10.3969/j.issn.1672-1756.2018.02.009.
[34] Rowsell A, Ashburn A, Fitton C, et al.Participant expectations and experiences of a tailored physiotherapy intervention for people with Parkinson’s and a history of falls[J]. Disabil Rehabil, 2022, 44(5):727-735.DOI:10.1080/09638288.2020.1779824.
[35] 杨琰,董泗芹,赵宝生,等.早中期帕金森病患者运动管理的最佳证据总结[J].护理学报, 2023,30(9):37-42.DOI:10.16460/j.issn1008-9969.2023.09.037.
[36] Reifegerste D, Bachl M, Baumann E.Surrogate health information seeking in Europe: influence of source type and social network variables[J].Int J Med Inform, 2017,103:7-14.DOI:10.1016/j.ijmedinf.2017.04.006.
[37] El SR, Pluye P, Ibekwe F.Contexts and outcomes of proxy online health information seeking: mixed studies review with framework synthesis[J].J Med Internet Res, 2022,24(6):e34345.DOI:10.2196/34345.
[38] 富晶, 夏小童, 刘德峰, 等. 基于Siebens领域管理模式的延续性护理在帕金森病脑深部电刺激术后患者中的应用[J].中华现代护理杂志,2024,30(8):1084-1089.DOI:10.3760/cma.j.cn115682-20230706-02661.