A Delphi study to derive a Core Outcome Set for patient-reported outcomes related to dysphagia in Head and Neck Cancer

Measuring dysphagia-related patient-reported outcomes (PROs) in Head and Neck Cancer (HNC) is a complex task, due to the multidimensional nature of dysphagia and of its impact on HNC patients’ lives. Current PRO selection across research and clinical settings is heterogeneous, with no declared agreement among HNC practitioners regarding which dysphagia-related PROs are critical to capture a holistic perspective from HNC patients regarding the impact of dysphagia.

Aim

The aim of the proposed study is to develop a core outcome set (COS) of dysphagia-related PROs for use in HNC trials and across various clinical practice settings. This study will be informed from work now in progress that will establish a comprehensive list of psychometrically sound measures of dysphagia-related PROs in HNC. The specific objective of this study will then be to systematically engage a group of international stakeholders in HNC to reach a consensus on the most meaningful, valid and feasible dysphagia-related PROs for HNC, using Delphi consensus methods.

Contributors

Beatrice Manduchi [1,2,3], Principal investigator, PhD student
Margaret I. Fitch [4]
Jolie Ringash [5,6]
Doris Howell [7,8]
Rosemary Martino [1,2,3,6,9], PhD supervisor

Institutions:
1. Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
2. Department of Speech-Language Pathology, University of Toronto, Toronto, ON, Canada.
3. The Swallowing Lab, University of Toronto, Toronto, ON, Canada.
4. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
5. Department of Radiation Oncology, Princess Margaret Cancer Centre, University of Toronto, Toronto, ON, Canada.
6. Department of Otolaryngology-Head and Neck Surgery, University of Toronto, Toronto, ON, Canada.
7. Princess Margaret Cancer Centre, Toronto, ON, Canada.
8. University of Toronto, Toronto, ON, Canada.
9. Krembil Research Institute, University Health Network, Toronto, ON, Canada.

Further Study Information

Current Stage: Planning
Date: March 2022 - March 2023
Funding source(s): B.M. is supported by her studentship from the Swallowing Lab, Department of Speech-Language Pathology (Rehabilitation Sciences Institute, University of Toronto). R.M. is supported by her Canada Research Chair (Tier II) in Swallowing Disorders. The remaining authors received no specific funding for this work.


Health Area

Disease Category: Cancer

Disease Name: Dysphagia, Head and neck cancer

Target Population

Age Range: 18 - 120

Sex: Either

Nature of Intervention: Any

Stakeholders Involved

- Clinical experts
- Patient/ support group representatives
- Policy makers
- Researchers

Study Type

- COS Patient Reported Outcomes

Method(s)

- Consensus meeting
- Delphi process

A 2-round Delphi Consensus Process will be used to systematically engage a group of international stakeholders in HNC, including clinicians, researchers, decision makers and HNC patients. Consensus will be reached regarding which of the PROs for dysphagia in HNC are the most meaningful, valid and feasible for research purposes, thereby deriving a core set for use in clinical trials. From this core set, an additional consensus will be sought to select a core set of outcomes to be applied in HNC clinical contexts. The entire process will abide with published guidelines for the development of a Core Outcomes Set.

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