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通过社交媒体调查对意大利语前极重度听力损失患者早期人工耳蜗植入情况的分析

Early cochlear implantation in prelingual profound hearing loss in Italy, analyzed by means of a social media survey.

作者信息

Orzan Eva, Pizzamiglio Giulia, Magadle Jad, Bubbico Luciano, Cutler Jodi M, Consolino Patrizia, Burdo Sandro, Zamagni Giulia, Magni Elena, Mariottini Claudio, Gambacorta Valeria, Ricci Giampietro, Brotto Davide

机构信息

Institute for Maternal and Child Health IRCCS "Burlo Garofolo", Trieste, Italy.

Department of Radiology, University of Trieste, Trieste, Italy.

出版信息

Front Pediatr. 2023 Feb 3;11:1031341. doi: 10.3389/fped.2023.1031341. eCollection 2023.

DOI:10.3389/fped.2023.1031341
PMID:36816372
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9935678/
Abstract

OBJECTIVE

To assess newborn hearing screening (NHS) impact on timing of cochlear implant (CI) surgery of patients with prelingual bilateral profound hearing impairment (BPHI), in order to evaluate whether the NHS ultimately serves the needs of the target population in Italy.

METHODS

An online questionnaire was created to survey subjects affected by prelingual BPHL born between 1990 and 2018. Questions focused on age at BPHI diagnosis, first and second CI surgery (if performed), and the region in which the surgery was performed. The survey was distributed to potential participants social media communities used by hearing impaired people or their family members for sharing advice and offering support. Responses were analyzed using descriptive statistics.

RESULTS

Among the 318 respondents who completed the questionnaire, 276 (87%) reported having chosen CI surgery, 2/3 of them bilaterally. In the vast majority (97%) of cases the CI is used on a daily basis. Most of the people residing in the center (65%) and southern Italy (71%) had to move from their region of residence to perform the surgery. Late CI surgery was associated with failure to perform NHS ( = 0.007), birth before 2011 ( = 0.009), definitive diagnosis of BPHI after 6 months of life ( = 0.002), and progressive hearing impairment ( < 0.001).

CONCLUSION

The worldwide scientific approval of the NHS as the current best opportunity for early diagnosis and CI treatment for prelingual BPHI is confirmed by what patients and families reported the online questionnaire used for this study. In recent years, early bilateral cochlear implantation has become increasingly available in Italy, but late diagnosis, progressive hearing loss, failure to perform the NHS and lack of follow-up are still open questions. A large proportion of families had to move from the region of residence to have their child undergo CI surgery, revealing inequalities in terms of geographical disparities. Social media has proved to be a valuable, fast and inexpensive tool for gathering information on the effectiveness of health prevention programs, involving a large sample of individuals in a short amount of time.

摘要

目的

评估新生儿听力筛查(NHS)对语前双侧重度听力障碍(BPHI)患者人工耳蜗(CI)植入手术时机的影响,以评估NHS是否最终满足了意大利目标人群的需求。

方法

创建一份在线问卷,对1990年至2018年出生的受语前BPHL影响的受试者进行调查。问题集中在BPHI诊断时的年龄、首次和第二次CI手术(如果进行了)以及手术进行的地区。该调查分发给潜在参与者,这些参与者来自听力受损者或其家庭成员用于分享建议和提供支持的社交媒体社区。使用描述性统计分析回复。

结果

在完成问卷的318名受访者中,276人(87%)报告选择了CI手术,其中三分之二为双侧手术。在绝大多数(97%)情况下,CI每天都在使用。居住在意大利中部(65%)和南部(71%)的大多数人不得不从居住地区迁移到其他地方进行手术。CI手术延迟与未进行NHS(P = 0.007)、2011年前出生(P = 0.009)、出生后6个月后确诊BPHI(P = 0.002)以及进行性听力障碍(P < 0.001)有关。

结论

本研究使用的在线问卷中患者和家庭的报告证实了NHS作为语前BPHI早期诊断和CI治疗当前最佳机会在全球范围内获得科学认可。近年来,早期双侧人工耳蜗植入在意大利越来越普遍,但诊断延迟、进行性听力损失、未进行NHS以及缺乏随访仍然是悬而未决的问题。很大一部分家庭不得不从居住地区迁移以便让孩子接受CI手术,这揭示了地理差异方面的不平等。事实证明,社交媒体是收集有关健康预防计划有效性信息的有价值、快速且廉价的工具,能在短时间内涉及大量个体。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9f93/9935678/a73b447d996b/fped-11-1031341-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9f93/9935678/7d46ba31bf4f/fped-11-1031341-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9f93/9935678/826b1f574114/fped-11-1031341-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9f93/9935678/a73b447d996b/fped-11-1031341-g003.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9f93/9935678/7d46ba31bf4f/fped-11-1031341-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9f93/9935678/826b1f574114/fped-11-1031341-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9f93/9935678/a73b447d996b/fped-11-1031341-g003.jpg

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Universal newborn hearing screening in the Italian Region of Sicily in 2018.2018 年意大利西西里地区的新生儿普遍听力筛查。
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