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一项关于共同制定心脏骤停幸存者及健康相关生活质量患者报告结局指标(CASHQoL)的国际合作研究:制定长式指标的方案

An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): A protocol for developing the long-form measure.

作者信息

Haywood Kirstie L, Southern Charlotte, Tutton Elizabeth, Swindell Paul, Ellard David, Pearson Nathan A, Parsons Helen, Couper Keith, Daintyi Katie N, Agarwal Sachin, Perkins Gavin D

机构信息

Warwick Research in Nursing, Warwick Medical School, University of Warwick, Gibbet Hill, Coventry CV4 7AL, United Kingdom.

Doctoral Student. Warwick Research in Nursing, Warwick Medical School, University of Warwick, Gibbet Hill, Coventry CV4 7AL, United Kingdom.

出版信息

Resusc Plus. 2022 Aug 31;11:100288. doi: 10.1016/j.resplu.2022.100288. eCollection 2022 Sep.

DOI:10.1016/j.resplu.2022.100288
PMID:36059385
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9437904/
Abstract

BACKGROUND

Current measures of health-related quality of life are neither sufficiently sensitive or specific to capture the complex and heterogenous nature of the recovery and survivorship associated with cardiac arrest. To address this critical practice gap, we plan a mixed-methods study to co-produce and evaluate a new cardiac arrest-specific patient/survivor-reported outcome measure (PROM).

METHODS

International guidelines have informed a two-stage, iterative, and interactive process.Stage one will establish what is important to measure following cardiac arrest. A meta-ethnography of published qualitative research and a qualitative exploration of the experiences of survivors and their key supporters will inform the development of a measurement framework. This will be supplemented by existing, extensive reviews describing concepts that have previously been measured in this population. Focus groups with survivors, key supporters, and healthcare professionals, followed by further interviews with survivors and key supporters, will inform the iterative refinement of the framework, candidate items, and PROM structure.Stage two will involve a psychometric evaluation following completion by a large cohort of survivors. Measurement theory will inform: the identification of items that best measure important outcomes; item reduction; and provide robust evidence of measurement and practical properties.

DISCUSSION

An international, collaborative approach to PROM development will engage survivors, key supporters, researchers, and health professionals from study commencement. Successful co-production of the cardiac arrest survivorship and health-related quality of life (CASHQoL) measure will provide a robust, relevant, and internationally applicable measure, suitable for completion by adult survivors, and integration into research, registries, and routine care settings.Ethical approval: University of Warwick Biomedical & Scientific Research Ethics Committee (BSREC 22/20-21 granted 10/11/20).

摘要

背景

目前与健康相关的生活质量测量方法既不够敏感也不够特异,无法捕捉与心脏骤停相关的恢复和生存的复杂异质性。为了弥补这一关键的实践差距,我们计划开展一项混合方法研究,共同制定并评估一种新的针对心脏骤停患者/幸存者报告的结局测量指标(PROM)。

方法

国际指南为一个两阶段、迭代且互动的过程提供了指导。第一阶段将确定心脏骤停后需要测量的重要内容。已发表定性研究的元民族志以及对幸存者及其主要支持者经历的定性探索将为测量框架的制定提供参考。这将通过现有的广泛综述进行补充,这些综述描述了此前在该人群中测量过的概念。与幸存者、主要支持者和医疗保健专业人员进行焦点小组讨论,随后对幸存者和主要支持者进行进一步访谈,将为框架、候选条目和PROM结构的迭代完善提供参考。第二阶段将在大量幸存者完成后进行心理测量学评估。测量理论将为以下方面提供指导:确定最能测量重要结局的条目;条目精简;并提供测量和实用属性的有力证据。

讨论

一种国际合作的PROM开发方法将从研究开始就吸引幸存者、主要支持者、研究人员和卫生专业人员参与。成功共同制定心脏骤停幸存者和与健康相关的生活质量(CASHQoL)测量指标将提供一种强大、相关且国际适用的测量指标,适合成年幸存者完成,并可整合到研究、登记处和常规护理环境中。伦理批准:华威大学生物医学与科学研究伦理委员会(2022年11月10日批准,BSREC 22/20 - 21)。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b6be/9437904/91d00876cc4b/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b6be/9437904/91d00876cc4b/gr1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b6be/9437904/91d00876cc4b/gr1.jpg

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