Department of Neurology, Mayo Clinic, Rochester, MN.
Department of Health Sciences Research, Mayo Clinic, Rochester, MN.
Am J Speech Lang Pathol. 2023 Aug 17;32(4S):1793-1805. doi: 10.1044/2022_AJSLP-22-00140. Epub 2023 Feb 9.
Prior studies have shown that communication-related participation restrictions in patients with degenerative disease do not always match clinician judgment or objective indices of symptom severity. Although there is a growing body of literature documenting that discrepancies between patients with dementia and their care partners' perception of participation restrictions exist, it is not known how care partner perceptions of participation restrictions specifically match or diverge from the patients' experiences, which may inform the use of care partner proxy in the context of degenerative diseases.
Thirty-eight patients with progressive neurologic conditions (progressive supranuclear palsy, corticobasal syndrome, and primary progressive aphasia or apraxia of speech) and, in most instances, focal cognitive-communication disorders were included. The patients and their accompanying care partners independently completed the Communicative Participation Item Bank, short form, a 10-question survey about communication participation restrictions in different contexts. Care partners were instructed to complete the form with their perception of the patient's experience. The difference between patient and care partner total scores were calculated and analyzed relative to clinical and demographic variables of interest.
Care partner ratings modestly tracked with patient experience and objective indices of symptom severity but did not exactly match patient ratings. The presence of aphasia increased, but did not fully account for, the likelihood of a discrepancy between care partner and patient ratings.
Although careful consideration should be given prior to using care-partner report as a proxy for patient experience, it is worthwhile to include care partner ratings as a means of supporting conversations about differing perceptions, guiding joint intervention planning, and monitoring care-partner perceptions of change along with the implementation of supported conversation strategies.
先前的研究表明，在退行性疾病患者中，与沟通相关的参与受限并不总是与临床医生的判断或症状严重程度的客观指标相符。尽管越来越多的文献记录了痴呆症患者及其护理伙伴对参与受限的感知存在差异，但尚不清楚护理伙伴对参与受限的感知如何与患者的体验相匹配或存在差异，这可能为退行性疾病中使用护理伙伴代理提供信息。
纳入了 38 名患有进行性神经疾病（进行性核上性麻痹、皮质基底节综合征和原发性进行性失语或言语运动障碍）的患者，且在大多数情况下，伴有局灶性认知-沟通障碍。患者及其陪同的护理伙伴独立完成了沟通参与项目库简表，这是一个关于不同情境下沟通参与受限的 10 个问题的调查。护理伙伴被指示根据患者的体验来完成表格。计算并分析了患者和护理伙伴总分之间的差异，以及与相关的临床和人口统计学变量的关系。
护理伙伴的评分与患者的体验和症状严重程度的客观指标有一定的相关性，但并不完全与患者的评分相符。存在失语症会增加，但并不能完全解释护理伙伴和患者评分之间差异的可能性。
尽管在使用护理伙伴报告作为患者体验的代理之前应慎重考虑，但将护理伙伴的评分作为一种手段纳入考虑是值得的，这可以帮助支持对不同感知的讨论，指导联合干预计划，并监测护理伙伴对变化的感知，同时实施支持性对话策略。
