罕见骨骼疾病患者及家属健康信息获取途径与需求调查

刘立立; 贺冰洁; 陈暐烨; 孙月; 单为如; 张志军; 王胜锋; 詹思延

doi:10.16462/j.cnki.zhjbkz.2020.10.021

罕见骨骼疾病患者及家属健康信息获取途径与需求调查

doi: 10.16462/j.cnki.zhjbkz.2020.10.021

1.
100191 北京, 北京大学公共卫生学院流行病与卫生统计学系
2.
518000 深圳, 深圳市零壹罕见骨病关爱中心

基金项目:

国家自然科学基金重大研究计划培育项目 91646107

详细信息

通讯作者:
王胜锋, E-mail:shengfeng1984@126.com

中图分类号: R68;R181
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- 文章访问数: 384
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- PDF下载量: 19
- 被引次数: 0
出版历程
- 收稿日期: 2020-01-09
- 修回日期: 2020-03-18
- 刊出日期: 2020-10-10

Survey of access and demands of health information in patients with rare bone diseases and their families

1.
Department of Epidemiology and Biostatistics, School of Public Health, Peking University, Beijing 100191, China
2.
Shenzhen 01 rare bone diseases care center, Shenzhen 518000, 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

摘要

摘要: 目的了解罕见骨骼疾病患者及家属获取罕见病相关健康信息的现状及需求。方法借助问卷星自拟调查问卷，通过罕见骨骼疾病公益组织开展线上调查。收集信息包括罕见病相关健康信息的获取途径与需求建议。结果共收集有效问卷199份，涉及10种罕见骨骼疾病。76.38%的问卷由患者家属填写，有84.92%的患者或家属选择网络平台（手机、电脑等）获取健康信息，其中搜索引擎（66.86%）和微信公众号（63.31%）使用最为频繁。有85.05%的患者或家属关注了1~3个罕见病公众号，最受关注的罕见病公众号健康信息前三位分别是诊疗知识（91.59%）、相关政策（83.18%）和公益活动（73.83%），而患者最希望增加的信息内容前三位则是相关政策（82.24%）、诊疗知识（75.70%）和前沿资讯（74.77%）。结论目前罕见骨骼疾病患者及家属主要通过网络平台获取健康信息，需求集中在政策、诊疗知识及前沿资讯上，未来需加大对这三方面的关注。
- 罕见骨骼疾病 /
- 健康信息 /
- 获取途径 /
- 需求
Abstract: Objective To describe the current status and needs of patients with rare bone diseases and their families in obtaining health information. Methods We developed a self-designed questionnaire by Wenjuanxing, and conducted an online survey through a non-profit organization of rare bone diseases. The information collected included access and needs/recommendations about health information related to rare bone diseases. Results A total of 199 valid questionnaires were collected, with 10 rare bone diseases involved. 76.38% of the questionnaires were filled out by family members of patients. The patients or their families who chose online platforms (mobile phones, computers, etc.) to obtain health information accounted for 84.92%, and the search engine (66.86%) and WeChat Official Accounts (63.31%) were used most frequently. 85.05% of the patients or their families followed 1 to 3 WeChat Official Accounts of rare disease. The top three health information focus on WeChat Official Accounts were diagnosis and treatment knowledge (91.59%), related policies (83.18%), and public welfare activities (73.83%), in turn, and the top three that patients most wanted to increase were related policies (82.24%), diagnosis and treatment knowledge (75.70%), and cutting-edge information (74.77%). Conclusions Patients with rare bone diseases and their families mainly obtain health information through online platforms, with greater needs on policies, diagnosis and treatment knowledge and the cutting-edge information, and providers should focus more precisely on these three aspects in the future.
- Rare bone diseases /
- Health information /
- Acquiring ways /
- Needs

HTML全文

表 1 调查对象的基本信息[n(%)]

Table 1. Characteristics of eligible individuals [n(%)]

变量	患者本人	患者家属
填写数量	47(23.62)^b	152(76.38)
性别
男	100(50.25)	18(11.84)
女	99(49.75)	134(88.16)
年龄(岁)^a	6.00(2.50, 17.00)^c	33.50(31.00, 40.00)
0~	136(70.10)	0(0.00)
15~	37(19.07)	20(13.16)^d
30~	17(8.76)	117(76.97)
45~	3(1.55)	15(9.87)
>60	1(0.52)	0(0.00)
教育水平
初中及以下	27(57.45)	37(24.34)
高中	4(8.50)	32(21.05)
大学及以上	16(34.05)	83(54.61)
注：^aM(P₂₅, P₇₅); ^b仅患者本人填写数量，但表格中患者性别、年龄为所有患者数据; ^c逻辑核查年龄无效5例; ^d此分组中年龄最低为25岁。

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表 2 调查对象的健康信息获取情况

Table 2. The health information acquisition of respondents

变量	人数	百分比(%)
是否通过网络平台获取信息
是	169	84.92
否	30	15.08
获取信息的网络平台
搜索引擎(如百度、搜狗等)	113	66.86
微信公众号	107	63.31
其他	33	19.53
新闻客户端(如天天快报、搜狐新闻等)	16	9.47
微博	14	8.28
是否经常使用菜单栏
是	50	46.73
否	57	53.27
菜单栏是否利于阅读
是	89	83.18
否	18	16.82
关注的内容信息^a
诊疗知识	98	91.59
相关政策	89	83.18
公益活动	79	73.83
前沿资讯	77	71.96
基础研发	68	63.55
患者故事	63	58.88
诊疗救助服务	52	48.60
学术会议或技能培训	28	26.17
其他	8	7.48
带来好处^a
了解更多诊疗知识	102	95.33
了解更多政策信息	94	87.85
获得更好的治疗途径	90	84.11
改变面对疾病的心态	73	68.22
增强战胜疾病的信心	70	65.42
更好地与医生交流	67	62.62
其他	5	4.67
^a为多选题，纵向合计>100%。

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表 3 调查对象的健康信息需求

Table 3. The health information demand of respondents

变量	人数	百分比(%)
希望增加的内容信息^a
相关政策	88	82.24
诊疗知识	81	75.70
前沿资讯	80	74.77
基础研发	76	71.03
公益活动	68	63.55
诊疗救助服务	57	53.27
学术会议或技能培训	45	42.06
患者故事	39	36.45
其他	6	5.61
希望推送形式^a
文字	95	88.79
图片	85	79.44
视频	71	66.36
音频	35	32.71
注：^a为多选题，纵向合计>100%。

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参考文献(29)

[1]	Richter T, Nestler-Parr S, Babela R, et al. Rare disease terminology and definitions-a systematic global review:report of the ISPOR rare disease special interest group[J]. Value Health, 2015, 18(6):906-914. DOI: 10.1016/j.jval.2015.05.008.
[2]	郭奕斌, 李荣.罕见遗传性骨病大家系调查[J].中华骨科杂志, 2014, 34(8):880-882. DOI: 10.3760/cma.j.issn.0253-2352.2014.08.013. Guo YB, Li R. A survey of rare genetic bone diseases[J]. Chin J Orthop, 2014, 34(8):880-882. DOI: 10.3760/cma.j.issn.0253-2352.2014.08.013.
[3]	刘畅, 许玉萍, 夏维波.从罕见骨骼疾病研究到对复杂骨病的认识[J].中华骨质疏松和骨矿盐疾病杂志, 2017, 10(3):209-215. DOI: 10.3969/j.issn.1674-2591.2017.03.003. Liu C, Xu YP, Xia WB. From rare bone disease research to the complex bone disease[J]. Chin J Osteoporosis & Bone Miner Res, 2017, 10(3):209-215. DOI: 10.3969/j.issn.1674-2591.2017.03.003.
[4]	江心培.从冰桶挑战赛看社交网站助力公益传播[J].青年记者, 2014, (35):92-92. DOI: 10.3969/j.issn.1002-2759.2014.35.062. Jiang XP. Assistance form social networking sites for the propaganda of public welfare in sight of the ice bucket challenge[J]. Youth Journalist, 2014, (35):92-92. DOI: 10.3969/j.issn.1002-2759.2014.35.062.
[5]	戴菲菲, 刘玉秀, 苏义, 等.网络环境下患者健康信息获取和医疗服务利用调查研究[J].医学研究生学报, 2014, 27(5):517-520. DOI: 10.3969/j.issn.1008-8199.2014.05.017. Dai FF, Liu YX, Su Y, et al. Research on patients' acquisition of health information and utilization of medical services under the network environment[J]. J Med Postgra, 2014, 27(5):517-520. DOI: 10.3969/j.issn.1008-8199.2014.05.017.
[6]	腾讯. 2018微信数据报告[ Tencent. 2018 WeChat data report[EB/OL]. (2018-09)[2020-01-05]. https://support.weixin.qq.com/cgi-bin/mmsupport-bin/getopendays
[7]	李阳.微信公众平台的角色定位与功能调适[J].社会科学辑刊, 2014, (2):57-61. http://www.wanfangdata.com.cn/details/detail.do?_type=perio&id=shkxjk201402009 Li Y. Role positioning and function adjustment of WeChat public platform[J]. Social Science Journal, 2014, (2):57-61. http://www.wanfangdata.com.cn/details/detail.do?_type=perio&id=shkxjk201402009
[8]	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, 41(3):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, 41(3):470-475. DOI: 10.3760/cma.j.jssn.0254-6450.2020.03.000.
[9]	潘海峰, 赵婵娜, 叶冬青.信息流行病学研究进展[J].中华疾病控制杂志, 2019, 23(5):497-500. DOI: 10.16462/j.cnki.zhjbkz.2019.05.001. Pan HF, Zhao CN, Ye DQ. Advances in information epidemiology[J]. Chin J Dis Control Prev, 2019, (5):497-500. DOI: 10.16462/j.cnki.zhjbkz.2019.05.001.
[10]	Orphanet. The portal for rare diseases and orphan drugs[EB/OL]. (2014-03)[2020-01-05]. https://www.orpha.net/consor/cgi-bin/Disease.php?lng=EN.
[11]	Rare diseases partner. Rare diseases library[EB/OL].[2020-01-05]. 罕见病伙伴.罕见疾病库[ Rare diseases partner. Rare diseases library[EB/OL].[2020-01-05].
[12]	齐红飞.微信公众平台传播特性研究[D].郑州: 郑州大学, 2014. Qi HF. Research on communication characteristics of WeChat public platform[D]. Zhengzhou: Zhengzhou University, 2014.
[13]	Morgan T, Schmidt J, Haakonsen C, et al. Using the internet to seek information about genetic and rare diseases:a case study comparing data from 2006 and 2011[J]. JMIR Res Protocal, 2014, 3(1):e10. DOI: 10.2196/resprot.2916.
[14]	Rocha HM, Savatt JM, Riggs ER, et al. Incorporating social media into your support tool box:points to consider from genetics-based communities[J]. J Genet Couns, 2017, 27(2):470-480. DOI: 10.1007/s10897-017-0170-z.
[15]	Yli-Uotila T, Rantanen A, Suominen T. Motives of cancer patients for using the Internet to seek social support[J]. Eur J Cancer Care (Engl), 2013, 22(2):261-271. DOI: 10.1111/ecc.12025.
[16]	Boycott KM, Vanstone MR, Bulman BE, et al. Rare-disease genetics in the era of next-generation sequencing:discovery to translation[J]. Nat Rev Genet, 2013, 14(10):681-691. DOI: 10.1038/nrg3555.
[17]	Pauer F, Litzkendorf S, Gobel J, et al. Rare Diseases on the Internet:An Assessment of the Quality of Online Information[J]. J Med Internet Res, 2017, 19(1):e23. DOI: 10.2196/jmir.7056.
[18]	Walker K. Cognitive and affective uses of a thoracic outlet syndrome facebook support group[J]. Health Commun, 2014, 29(8):773-781. DOI: 10.1080/10410236.2013.800830.
[19]	Schumacher K, Stringer K, Donohue J, et al. Social media methods for studying rare diseases[J]. Pediatrics, 2014, 133(5):e1345-1353. DOI: 10.1542/peds.2013-2966.
[20]	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.
[21]	Delisle VC, Gumuchian ST, Rice DB, et al. Perceived benefits and factors that influence the ability to establish and maintain patient support groups in rare diseases:a scoping review[J]. Patient, 2017, 10(3):283-293. DOI: 10.1007/s40271-016-0213-9.
[22]	Angelis A, Tordrup D, Kanavos P. Socio-economic burden of rare diseases:a systematic review of cost of illness evidence[J]. Health Policy, 2015, 119(7):964-979. DOI: 10.1016/j.healthpol.2014.12.016.
[23]	Marija J, Jovana T, Zorica TS. The needs of patients with rare disease in Serbia. Why do we need National Strategy for rare disease?[J]. Health Soc Care Community, 2019, 27(5):e861-e870. DOI: 10.1111/hsc.12813.
[24]	Ni X, Shi T. The challenge and promise of rare disease diagnosis in China[J]. Sci China Life Sci, 2017, 60(7):681-685. DOI: 10.1007/s11427-017-9100-1.
[25]	Pogue RE, Cavalcanti DP, Shanker S, et al. Rare genetic diseases:update on diagnosis, treatment and online resources[J]. Drug Discov Today, 2018, 23(1):187-195. DOI: 10.1016/j.drudis.2017.11.002.
[26]	Tustin N. The role of patient satisfaction in online health information seeking[J]. J Health Commun, 2010, 15(1):3-17. DOI: 10.1080/10810730903465491.
[27]	Dempster G. The communication of health information through the media:public health opportunity[J]. Aust N Z J Public Health, 2017, 41(5):541. DOI: 10.1111/1753-6405.12672.
[28]	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, 26(5):524-531. DOI: 10.11946/cjstp.201411051071. Zhang YP. Research on the operation mode of WeChat public account of sci-tech periodicals-based on quantitative analysis of four core sci-tech periodicals[J]. Chinese Journal of Scientific and Technical Periodicals, 2015, 26(5):524-531. DOI: 10.11946/cjstp.201411051071.
[29]	Fay M, Rapley T, Foster H, et al. Can seeding in the clinic reach a wide audience? A proof of concept study on spreading a health message about juvenile idiopathic arthritis using a shareable online video[J]. Interact J Med Res, 2016, 5(1):e6. DOI: 10.2196/ijmr.4608.