'Without the Data You're Not Going to Know If It's Important or Not': A Mixed Methods Study on What Dysphagia Intervention Outcomes are Important to People with Parkinson's Disease and Family Members.

IF 2.2 3区 医学 Q1 OTORHINOLARYNGOLOGY
J Hirschwald, L Mooney, M Wolf, G Boyle, T Warnecke, M Walshe
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Abstract

The lack of patient and public involvement in oropharyngeal dysphagia (OD) intervention studies in Parkinson's disease (PD) can bias the choice of outcomes to be measured in these studies. This study aimed to obtain perspectives of individuals living with OD in PD and family members/caregivers on OD intervention outcomes that are important to them. This is part of a larger Core Outcome Set project. A mixed methods study with an international online cross-sectional survey and subsequent focus groups involving people with OD in PD and family members/caregivers was conducted. Survey results were analyzed using descriptive and inferential statistics. Intervention outcomes rated most important, significantly different, inconclusive, or identified as missing in the survey were clarified in follow-up focus groups with seven previous survey participants. Focus group data were audio recorded, transcribed verbatim and analyzed following inductive and deductive content analysis using NVivo. Twelve outcomes were rated as important by ≥ 80% of the 62 survey participants. The most important outcomes were penetration/aspiration and laryngeal sensation. Fear of choking was added as an important but missing intervention outcome. In the focus groups, findings from the survey were validated. Four content categories with eleven sub-categories were identified. OD intervention outcome priorities by people with OD in PD and family members/caregivers show only partial agreement with outcomes measured in published intervention studies on OD in PD. This highlights the importance of stakeholder involvement in the design and implementation of these studies to make findings relevant to all.

“没有数据你就不知道它是否重要”:一项关于吞咽困难干预结果对帕金森病患者及其家庭成员重要的混合方法研究。
缺乏患者和公众参与帕金森病(PD)口咽吞咽困难(OD)干预研究可能会对这些研究中测量结果的选择产生偏倚。本研究旨在获得PD患者及其家庭成员/照顾者对其重要的OD干预结果的看法。这是一个更大的核心成果集项目的一部分。采用一项国际在线横断面调查和随后的焦点小组进行了一项混合方法研究,涉及PD患者和家庭成员/照顾者。调查结果采用描述性统计和推理统计进行分析。干预结果被评为最重要的,显著不同的,不确定的,或在调查中被确定为缺失的,在与七个先前的调查参与者的随访焦点小组中被澄清。对焦点组数据进行录音,逐字转录,并使用NVivo进行归纳和演绎内容分析。62名调查参与者中有≥80%的人认为12个结果是重要的。最重要的结果是穿透/吸入和喉感觉。对窒息的恐惧被添加为一项重要但缺失的干预结果。在焦点小组中,调查结果得到了验证。确定了四个内容类别和十一个子类别。PD患者及其家庭成员/照顾者的OD干预结果优先级与已发表的PD患者OD干预研究的结果仅部分一致。这突出了利益相关者参与这些研究的设计和实施的重要性,使研究结果与所有人相关。
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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来源期刊
Dysphagia
Dysphagia 医学-耳鼻喉科学
CiteScore
4.90
自引率
15.40%
发文量
149
审稿时长
6-12 weeks
期刊介绍: Dysphagia aims to serve as a voice for the benefit of the patient. The journal is devoted exclusively to swallowing and its disorders. The purpose of the journal is to provide a source of information to the flourishing dysphagia community. Over the past years, the field of dysphagia has grown rapidly, and the community of dysphagia researchers have galvanized with ambition to represent dysphagia patients. In addition to covering a myriad of disciplines in medicine and speech pathology, the following topics are also covered, but are not limited to: bio-engineering, deglutition, esophageal motility, immunology, and neuro-gastroenterology. The journal aims to foster a growing need for further dysphagia investigation, to disseminate knowledge through research, and to stimulate communication among interested professionals. The journal publishes original papers, technical and instrumental notes, letters to the editor, and review articles.
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