Washington University School of Medicine, St. Louis, Missouri, USA.
Division of Audiology, St. Louis Children's Hospital, St. Louis, Missouri, USA.
Ear Hear. 2020 Nov/Dec;41(6):1684-1691. doi: 10.1097/AUD.0000000000000886.
Children with malignancies may be exposed to ototoxic therapies resulting in sensorineural hearing loss (SNHL). There is no consensus as to when intervention with amplification is necessary due to a variety of factors such as disease status, speech and language development, perceived difficulty with communication, and limitations of technology to fit these challenging losses. The decision to proceed with amplification after cancer can be difficult for patients and families. The purpose of this study is (1) to understand the decision-making (DM) process of childhood cancer survivors (CCSs) with SNHL and their parents and (2) to identify their decisional needs.
Semi-structured interviews guided by the Ottawa's decision support framework were recorded and transcribed verbatim. Inclusion criteria were CCSs ages 8 to 30 years old with a Chang grade >1b SNHL and off-therapy; parents of this group were also eligible. Patients with active disease were excluded. Prompts inquired of sources of decisional conflict, role in DM, and DM behaviors. Inductive content analysis of the narrative qualitative data was used.
Seven parents of CCSs and 6 CCSs participated. Themes in the CCS group included: (1) making sense of ototoxic SNHL; (2) desiring personalized education and treatment of SNHL; (3) playing an active role in the joint DM process; and (4) accepting hearing aids requires time and effort. The parent group shared the first and last theme with the CCS group and had two unique themes: (1) needing experts to respect the individual's journey to SNHL acceptance and (2) moving past the cancer experience to acceptance. Parents more often framed their DM within the context of already experiencing the trauma of cancer, whereas CCSs did not. One parent said, "You see all the rubble and you've lived through the devastation of the storm, but now you got to figure out what's broken." CCSs expressed bodily concerns regarding amplification, such as discomfort to the ear and difficulty in adjusting to the volume. The following needs were identified: early, re-enforced education regarding late effects risks; open communication among providers, CCSs, and parents; and audiogram result interpretations in patient- and parent-friendly language.
Understanding the DM process from the CCS and parent's perspectives should be considered when providing counseling for hearing amplification in the setting of cancer-related SNHL. Earlier and consistent delivery of late effects education, open communication regarding risk for SNHL, and improved delivery of audiogram results should be targets for meeting unmet needs. These findings should inform the development of decision aids to reduce decisional conflict in this population.
患有恶性肿瘤的儿童可能会接受导致感音神经性听力损失（SNHL）的耳毒性治疗。由于疾病状态、言语和语言发育、感知到的沟通困难以及技术限制以适应这些具有挑战性的损失等多种因素，目前尚无关于何时需要进行听力放大干预的共识。对于患者及其家属来说，决定是否进行癌症后的听力放大可能是一个困难的决定。本研究的目的是：（1）了解感音神经性听力损失的儿童癌症幸存者（CCS）及其父母的决策（DM）过程；（2）确定他们的决策需求。
根据渥太华决策支持框架进行的半结构化访谈被记录并逐字转录。纳入标准为年龄在 8 至 30 岁之间、Chang 分级>1b SNHL 且已完成治疗的 CCS；该组的父母也符合条件。患有活动性疾病的患者被排除在外。提示询问决策冲突的来源、DM 中的角色以及 DM 行为。使用叙事定性数据的归纳内容分析。
共有 7 名 CCS 父母和 6 名 CCS 参与。CCS 组的主题包括：（1）理解耳毒性 SNHL；（2）希望个性化教育和治疗 SNHL；（3）在联合 DM 过程中发挥积极作用；（4）接受助听器需要时间和努力。父母组与 CCS 组共享前两个主题，并有两个独特的主题：（1）需要专家尊重个体接受 SNHL 的旅程；（2）超越癌症经历接受现实。父母组更经常将他们的 DM 框架置于已经经历癌症创伤的背景下，而 CCS 组则没有。一位家长说：“你看到所有的瓦砾，你经历了风暴的破坏，但现在你必须弄清楚哪些是破碎的。”CCS 对助听器表达了身体上的担忧，例如耳朵不适和难以适应音量。确定了以下需求：早期、强化关于晚期影响风险的教育；提供者、CCS 和父母之间的开放沟通；以及以患者和家长友好的语言解释听力图结果。
在癌症相关 SNHL 听力放大设置中提供咨询时，应从 CCS 和家长的角度考虑决策过程。早期和持续提供晚期效应教育、公开沟通 SNHL 风险以及改善听力图结果的提供应成为满足未满足需求的目标。这些发现应该为开发决策辅助工具以减少该人群的决策冲突提供信息。
