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.
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.
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.
Disease Category: Cancer
Disease Name: Dysphagia, Head and neck cancer
Age Range: 18 - 120
Sex: Either
Nature of Intervention: Any
- Clinical experts
- Patient/ support group representatives
- Policy makers
- Researchers
- COS Patient Reported Outcomes
- 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.