Swallowing outcomes in dysphagia interventions in Parkinson’s disease: a scoping review

Hirschwald, Julia; Hofacker, Jule; Duncan, Sallyanne; Walshe, Margaret

doi:10.1136/bmjebm-2022-112082

Cited by 10 publications

(10 citation statements)

References 53 publications

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“…To the best of our knowledge, this is the first completed COS specific to dysphagia, regardless of the underlying patient etiology. Although, there are three additional dysphagia‐related COS currently under development, focused respectively on dysphagia in: critical care, 38 Parkinson's disease, 39 and with traditional Chinese medicine 40 . The lack of published dysphagia‐related COS limits our opportunities for direct comparisons with existing literature.…”

Section: Discussionmentioning

confidence: 99%

A core outcome set for patient‐reported dysphagia for use in head and neck cancer clinical trials: An international multistakeholder Delphi study

Manduchi,

Fitch,

Ringash

et al. 2024

Head & Neck

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BackgroundMeasuring dysphagia‐related patient‐reported outcomes (PROs) in Head and Neck Cancer (HNC) patients is challenging due to dysphagia's multidimensional impact, causing inconsistency in outcome reporting. To address this issue, this study derived a consensus‐based core outcome set (COS) for patient‐reported dysphagia in HNC clinical trials where swallowing is a primary or secondary endpoint.MethodsA sample of HNC clinicians, researchers, patients, and caregivers participated in a 2‐Round Delphi technique. A Delphi survey, containing a comprehensive list of dysphagia‐related PROs, was developed. In Round 1, participants rated item importance on a 5‐point scale. Items rated ≥4 by >70% advanced to Round 2, where a consensus meeting addressed items with varied opinions, and the Delphi survey with remaining items was completed. Items rated ≥4 by >70% formed the final COS.ResultsForty‐five participants from nine countries were recruited. After Round 1, 40 items were excluded and 64 advanced to Round 2. After Round 2, a 7‐outcome COS was established, comprising the domains of dysphagia symptoms, health status and quality of life.ConclusionThis study achieved consensus among HNC stakeholders on essential dysphagia PROs for HNC clinical trials. It is advisable to include these 7‐core concepts in clinical trials involving people with HNC to facilitate treatment comparisons and data synthesis.

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Section: Discussionmentioning

confidence: 99%

A core outcome set for patient‐reported dysphagia for use in head and neck cancer clinical trials: An international multistakeholder Delphi study

Manduchi,

Fitch,

Ringash

et al. 2024

Head & Neck

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“…The issue of limited comparability of intervention effects across studies due to differing outcomes requires further attention in future research. International efforts towards the development of consensus‐based core outcome sets for clinical trials in health research (Williamson et al., 2012) and specifically for research in the field of dysphagia (Moloney et al., 2022; Speyer et al., 2021) in PD (Hirschwald et al., 2021) are one possible way to address this issue. The uptake as well as barriers and facilitators to the implementation of core outcome measures will require evaluation in the future (Hughes et al., 2021).…”

Section: Discussionmentioning

confidence: 99%

Behavioural interventions for swallowing in subjects with Parkinson's disease: A mixed methods systematic review

Winiker

Kertscher

2023

Intl J Lang & Comm Disor

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Background: : Dysphagia is prevalent in subjects with Parkinson's disease (PD). Swallowing intervention to improve or maintain swallowing function is of major importance as dysphagia may considerably impact physical and psycho-social health. Aims: : A mixed methods systematic review was conducted to summarize and appraise literature reporting (1) effects of behavioural interventions for swallowing in individuals with PD; and (2) participants' perspectives of swallowing interventions. Methods & Procedures: : Electronic databases were searched systematically in July 2020 for articles published between 2014 and 2020. In addition, studies published between 2000 and 2014 were identified non-systematically through previous reviews. Peer-reviewed quantitative and qualitative research in English or German documenting behavioural interventions for swallowing in individuals with a diagnosis of PD was eligible for inclusion. Participants at all disease stages were included. Behavioural interventions included rehabilitative and compensatory strategies. Studies reporting swallowing outcomes with and without a comparative group were included. For each study, the National Healthand Medical Research Council level of evidence was defined. Included studies were critically appraised using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields. An integrated synthesis was performed after separate analysis of effect data and data reflecting participants' experiences. This review was conducted based on published JBI methodology and the guideline from the Preferred Reporting Items for Systematic Reviews and Meta-Analysis system was followed. Main Contribution: : A total of 33 studies published in English met the inclusion criteria. Thirty-one studies reported quantitative data, one was qualitativeThis is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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“… 9 16 However, these views were not represented in any included study in the scoping review, or it remains unclear. 8 As they might be different to those of researchers, it is beneficial to expand the long list of outcomes version 1 with outcomes that are particularly important to clinicians, people with OD in PD, carers and family members. Furthermore, this provides the opportunity to amend wording of outcomes for the Delphi survey by using patient and carer language and hence, make the Delphi survey more accessible to all stakeholder groups.…”

Section: Methodsmentioning

confidence: 99%

“…Additionally, lack of information on outcomes, omitted outcomes and no inclusion of possible additional relevant outcomes were found to decrease the quality of clinical trials on OD in PD. 8 …”

Section: Introductionmentioning

confidence: 99%

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Development of a Core Outcome Set for Dysphagia Interventions in Parkinson’s disease (COS-DIP): study protocol

Hirschwald,

Duncan,

Warnecke

et al. 2024

BMJ Open

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IntroductionCurrent clinical trials on swallowing disorders (dysphagia) in Parkinson’s disease (PD) apply a high variety of outcomes and different outcome measures making comparative effectiveness research challenging. Furthermore, views of patients and dysphagia clinicians when selecting trial outcomes have not been considered in the past, thus study results may have little importance to them. This study aims to develop an agreed standardised Core Outcome Set for Dysphagia Interventions in Parkinson’s disease (COS-DIP), systematically measured and reported as a minimum for all clinical trials. It will also comprise guidance on outcome definitions, outcome measures and time points of measurement.Methods and analysisThe COS-DIP development will comprise five stages following established methodology: (1) a recent scoping review on all applied outcomes, their definitions, methods and time points of measurement in clinical trials in dysphagia in PD, (2) online surveys and focus groups with clinicians, patients, caregivers and family members to identify outcomes that are important to them, (3) an identified list of outcomes based on results of stage 1 and 2, (4) three round online Delphi survey with up to 200 key stakeholders to determine core outcomes and (5) two online consensus meetings with up to 40 representative key stakeholders to agree on all outcomes, definitions, methods and time points of measurement in the final COS-DIP.Ethics and disseminationFull ethical approval was obtained from the Research Ethics Committee, School of Linguistic, Speech and Communication Sciences, Trinity College Dublin, on 15 May 2023 (HT27). Dissemination of the COS-DIP will be enhanced through presentations at (inter-) national conferences and through peer-reviewed, open access publications of related manuscripts. Lay and professional information sheets and infographics will be circulated through relevant patient and professional organisations and networks.Trial registration numberThe COS-DIP study was registered prospectively with the Core Outcome Measures in Effectiveness Trials (COMET) database on 24 September 2021 (www.comet-initiative.org/Studies/Details/1942).

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Swallowing outcomes in dysphagia interventions in Parkinson’s disease: a scoping review

Cited by 10 publications

References 53 publications

A core outcome set for patient‐reported dysphagia for use in head and neck cancer clinical trials: An international multistakeholder Delphi study

A core outcome set for patient‐reported dysphagia for use in head and neck cancer clinical trials: An international multistakeholder Delphi study

Behavioural interventions for swallowing in subjects with Parkinson's disease: A mixed methods systematic review

Development of a Core Outcome Set for Dysphagia Interventions in Parkinson’s disease (COS-DIP): study protocol

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