Wellbeing measurement among adults with Charcot-Marie-Tooth disease

Health Care Transitions Pub Date : 2024-01-01 DOI:10.1016/j.hctj.2024.100053

Payton D. Rule, Megan W. Wolk, Patrick L. Hill

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Abstract

Background and aims

Wellbeing research among individuals with Charcot-Marie-Tooth disease (CMT) is limited. The goal of the current study is to characterize the challenges experienced by adults with CMT that researchers may miss by utilizing typical strategies to capture mental health and wellbeing.

Methods

In 2021, we recruited 288 US adults with CMT ( $M_{Age}$ = 60 years, 59% Female, 93% White) to take part in an online survey. Participants were presented with validated wellbeing and health measures, in addition to newly created measures specific to CMT, and then asked to provide free-response feedback about aspects of their lived experiences missing from these measures. Thematic analysis were applied to the free-response data to identify CMT-related difficulties that may impact wellbeing among adults with CMT.

Results

Results identified nine CMT-related challenges that are important to individuals with CMT and are often left out of wellbeing assessments in this population. The three most common themes identified were anxiety or worry, coping with loss of function or progression, and difficulty finding knowledgeable medical providers. Further, some aspects of the CMT experience may be comorbid.

Interpretation

These results can be used to inform future research and clinical practice in the CMT population.

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测量患有夏科-玛丽-牙病的成年人的幸福感

背景和目的对夏科-玛丽-牙病（CMT）患者进行的福祉研究十分有限。本研究的目的是描述成年 CMT 患者所经历的挑战，研究人员可能会因为使用典型策略来捕捉心理健康和幸福感而忽略这些挑战。方法 2021 年，我们招募了 288 名美国成年 CMT 患者（年龄 = 60 岁，59% 为女性，93% 为白人）参加在线调查。我们向参与者展示了经过验证的幸福感和健康测量方法，以及新创建的专门针对 CMT 的测量方法，然后要求他们就这些测量方法中缺失的生活经历的各个方面提供自由回复反馈。结果发现了九项与 CMT 相关的挑战，这些挑战对 CMT 患者非常重要，但却经常被排除在对该人群的幸福感评估之外。最常见的三个主题是焦虑或担忧、应对功能丧失或病情发展以及难以找到知识渊博的医疗服务提供者。此外，CMT 患者经历的某些方面可能存在合并症。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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Health Care Transitions

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