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一项通过远程医疗为帕金森病患者提供的沟通伙伴培训计划(与帕金森病患者更好地交流):可行性研究方案

A Communication Partner Training Program Delivered via Telehealth for People Living With Parkinson's (Better Conversations With Parkinson's): Protocol for a Feasibility Study.

作者信息

Clay Philippa, Beeke Suzanne, Volkmer Anna, Dangerfield Lynn, Bloch Steven

机构信息

Division of Psychology and Language Sciences, University College London, London, United Kingdom.

Adult Community Speech and Language Therapy, Solent NHS Trust, Portsmouth, United Kingdom.

出版信息

JMIR Res Protoc. 2023 Feb 3;12:e41416. doi: 10.2196/41416.

Abstract

BACKGROUND

Parkinson's can impact people's speech, cognition, pragmatics, and language, significantly affecting their conversations with others. The speech and language therapy approach called communication partner training (CPT) is effective for a range of communication difficulties. However, speech and language therapy interventions for people with Parkinson's predominantly focus on impairments, with little provision of CPT for this population. Better Conversations is a CPT approach that involves working with a dyad (the person with the communication difficulty and a conversation partner [CP]) to build conversation skills. It is effective at reducing barriers to conversation, and for some, it significantly increases targeted facilitatory strategies. Some approaches to CPT have been adapted to be delivered via telehealth. This can maximize ecological validity and convenience. Furthermore, telehealth is widely accepted as a delivery method for other interventions for Parkinson's. This study presents the protocol for a pilot feasibility study of a Better Conversations CPT delivered via telehealth to people living with Parkinson's and their CPs, called Better Conversations with Parkinson's (BCP).

OBJECTIVE

The primary aim is to evaluate the feasibility of the BCP program delivered via telehealth with a treatment group from a collaborating National Health Service (NHS) site to establish for a main trial whether BCP can be delivered as intended in an NHS setting. The aim is to establish: (1) the acceptability of the program for people living with Parkinson's, family members, and speech and language therapists (SLTs); (2) the feasibility of delivering the BCP program; (3) the recruitment and retention rates; (4) a sample size calculation; and (5) the most appropriate primary outcome measure.

METHODS

Ethical approval for this study was obtained from London-Central Research Ethics Committee (reference: 22/LO/0332). This case-series feasibility pilot study will recruit 10-12 dyads to ensure 10 complete data sets. Participants will be recruited by a collaborating NHS site located in England. Participants will be involved for 16 weeks (weeks 1-2 preintervention measures, weeks 3-8 intervention, weeks 10-12 postintervention measures, week 16 follow-up interview). Quantitative and qualitative methods will be used to analyze the study data. Speech, communication, and quality of life assessment data will be analyzed statistically to determine a suitably sensitive outcome measure. Descriptive statistics will be used to report on recruitment, attendance, and attrition. Finally, acceptability and feasibility will be evaluated using participant feedback, interviews, and the reflective diary and feedback of the SLT administering the therapy (by the research assistant who is the first author). This data will be analyzed using descriptive statistics and reflexive thematic analysis.

RESULTS

This study was approved for funding from Parkinson's UK. Study recruitment commenced in July 2022. The results of the data analysis are expected to be available by September 2024.

CONCLUSIONS

Insights from this study will provide valuable information about the acceptability and feasibility of a remotely delivered Better Conversations CPT approach for people living with Parkinson's and their CPs. An outcome of this study will be a manualized BCP program coproduced by people living with Parkinson's, their families, and a group of expert SLTs. The study results will guide the next stages of intervention development.

INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/41416.

摘要

背景

帕金森病会影响人们的言语、认知、语用能力和语言,严重影响他们与他人的交流。名为沟通伙伴训练(CPT)的言语和语言治疗方法对一系列沟通困难有效。然而,针对帕金森病患者的言语和语言治疗干预主要集中在损伤方面,为这一人群提供的CPT很少。“更好的对话”是一种CPT方法,涉及与二人组(有沟通困难的人和对话伙伴[CP])合作以培养对话技巧。它能有效减少对话障碍,对一些人来说,还能显著增加有针对性的促进策略。一些CPT方法已被改编为通过远程医疗提供。这可以最大限度地提高生态效度和便利性。此外,远程医疗被广泛接受为帕金森病其他干预措施的一种提供方式。本研究介绍了一项针对帕金森病患者及其CP通过远程医疗提供“更好的对话”CPT的试点可行性研究方案,称为“与帕金森病患者更好的对话”(BCP)。

目的

主要目的是评估通过远程医疗为来自合作的国民健康服务(NHS)机构的治疗组提供BCP项目的可行性,以便为主要试验确定BCP能否在NHS环境中按预期提供。目的是确定:(1)该项目对帕金森病患者、家庭成员和言语和语言治疗师(SLT)的可接受性;(2)提供BCP项目的可行性;(3)招募和保留率;(4)样本量计算;(5)最合适的主要结局指标。

方法

本研究获得了伦敦中央研究伦理委员会的伦理批准(参考号:22/LO/0332)。这项病例系列可行性试点研究将招募10 - 12个二人组以确保获得10套完整数据集。参与者将由位于英格兰的一个合作NHS机构招募。参与者将参与16周(第1 - 2周进行干预前测量,第3 - 8周进行干预,第10 - 12周进行干预后测量,第16周进行随访访谈)。将使用定量和定性方法分析研究数据。将对言语、沟通和生活质量评估数据进行统计分析,以确定一个适当敏感的结局指标。描述性统计将用于报告招募、出勤和损耗情况。最后,将使用参与者反馈、访谈以及实施治疗的SLT(由第一作者担任研究助理)的反思日记和反馈来评估可接受性和可行性。这些数据将使用描述性统计和反思性主题分析进行分析。

结果

本研究获得了英国帕金森病协会的资助批准。研究招募于2022年7月开始。数据分析结果预计在2024年9月可得。

结论

本研究的见解将为远程提供的“更好的对话”CPT方法对帕金森病患者及其CP的可接受性和可行性提供有价值的信息。本研究的一个成果将是由帕金森病患者、他们的家人以及一组专家SLT共同制定的手册化BCP项目。研究结果将指导干预发展的下一阶段。

国际注册报告识别码(IRRID):PRR1 - 10.2196/41416

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0657/9938441/0f1ef2a356c0/resprot_v12i1e41416_fig1.jpg

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