Pearson Stephanie E, Taylor John, Hoare Derek J, Patel Poulam, Baguley David M
Nottingham Biomedical Research Centre, National Institute for Health Research, Nottingham, United Kingdom.
Hearing Sciences, Division of Clinical Neuroscience, School of Medicine, University of Nottingham, Nottingham, United Kingdom.
JMIR Cancer. 2019 Mar 14;5(1):e10883. doi: 10.2196/10883.
Many cancer patients and survivors experience permanent and life-debilitating effects, such as ototoxicity, from treatment. Ototoxicity manifests as high-frequency hearing loss and tinnitus, which can have a detrimental effect on the quality of life (QoL) of those affected. Currently, there is little information and support offered to these patients who experience ototoxicity, potentially leading to many being undiagnosed and untreated.
The aim of this study was to explore the extent of ototoxic side effects, such as hearing loss and tinnitus, and their impact on cancer patients following chemotherapy treatment. Secondary objectives included detecting the time periods of onset and duration of the ototoxicity and identifying what support was available to this population.
Posts from publicly available online forums were thematically analyzed using the guidelines by Braun and Clarke. A coding manual was iteratively developed to create a framework for the analysis of the ototoxicity experience among the cancer population.
A total of 9 relevant online forums were identified, consisting of 86 threads and 570 posts from 377 members. Following the bottom-up thematic analysis, 6 major themes were identified: nature of ototoxicity, time of experienced ototoxicity, information on ototoxicity, quality of life, therapies, and online social support.
There was a significant number of reports expressing concerns about the lack of information on the risk of ototoxicity. More support for those suffering is needed; for example, improved interdepartmental communication between oncology and audiology services could optimize patient care. Patients should also be encouraged to communicate with their health care professionals about their ototoxicity and relay how their QoL is impacted by ototoxicity when accessing support. Tinnitus was the most common concern and was associated with distress. Hearing loss was less common; however, it was associated with fear and employment issues. Those who reported preexisting conditions were fearful about worsening their condition as their QoL was already impacted.
许多癌症患者及其幸存者会因治疗而经历永久性且使生活衰弱的影响，如耳毒性。耳毒性表现为高频听力损失和耳鸣，这会对受影响者的生活质量（QoL）产生不利影响。目前，对于这些经历耳毒性的患者，几乎没有提供相关信息和支持，这可能导致许多人未被诊断和治疗。
本研究的目的是探讨化疗治疗后耳毒性副作用（如听力损失和耳鸣）的程度及其对癌症患者的影响。次要目标包括检测耳毒性的发作时间和持续时间，并确定该人群可获得哪些支持。
使用布劳恩和克拉克的指南对公开在线论坛的帖子进行主题分析。通过迭代开发编码手册，为分析癌症人群的耳毒性经历创建一个框架。
共识别出9个相关在线论坛，包括86个主题帖和来自377名成员的570个帖子。经过自下而上的主题分析，确定了6个主要主题：耳毒性的性质、耳毒性经历的时间、耳毒性信息、生活质量、治疗方法和在线社会支持。
有大量报告表达了对耳毒性风险信息缺乏的担忧。需要为患者提供更多支持；例如，改善肿瘤学和听力学服务部门之间的跨部门沟通可以优化患者护理。还应鼓励患者与医护人员就其耳毒性进行沟通，并在寻求支持时告知耳毒性如何影响其生活质量。耳鸣是最常见的问题，与痛苦相关。听力损失不太常见；然而，它与恐惧和就业问题相关。那些报告有既往疾病的人担心病情恶化，因为他们的生活质量已经受到影响。
