Leah A Lechelt1, Jana M Rieger2,3, Katherine Cowan4, Brock J Debenham5, Bernie Krewski1, Suresh Nayar2,6, Akhila Regunathan2, Hadi Seikaly7, Ameeta E Singh8, Andreas Laupacis9,10. 1. Alberta Cancer Foundation, Edmonton, Alberta, Canada. 2. Institute for Reconstructive Sciences in Medicine, Misericordia Community Hospital, Edmonton, Alberta, Canada. 3. University of Alberta, Faculty of Rehabilitation Medicine, Edmonton, Alberta, Canada. 4. James Lind Alliance, Southampton, UK. 5. University of Alberta, Department of Oncology, Edmonton, Alberta, Canada. 6. University of Alberta, Department of Surgery, Edmonton, Alberta, Canada. 7. Division of Otolaryngology - Head and Neck Surgery, University of Alberta, Edmonton, Alberta, Canada. 8. University of Alberta, Division of Infectious Diseases, Edmonton, Alberta, Canada. 9. University of Toronto, Faculty of Medicine, Toronto, Canada. 10. Li Ka Shing Knowledge Institute of St Michael's Hospital, Toronto, Canada.
Abstract
BACKGROUND: The epidemiology, etiology, and management of head and neck cancer are evolving. Understanding the perspectives and priorities of nonresearchers regarding treatment uncertainties is important to inform future research. METHODS: Using the James Lind Alliance approach, patients, caregivers, and clinicians responded to a survey regarding their unanswered questions about treating and managing head and neck cancer. Distinct uncertainties were extracted from responses and sorted into themes. Uncertainties already answered in the literature were removed. Those remaining were ranked by patients and clinicians to develop a short list of priorities, which were discussed at a workshop and reduced to the top 10. RESULTS: One hundred sixty-one respondents posed 818 uncertainties, culminating in 77 for interim ranking and 27 for discussion at a workshop. Participants reached consensus on the top 10, which included questions on prevention, screening, treatment, and quality of life. CONCLUSION: Nonresearchers can effectively collaborate to establish priorities for future research in head and neck cancer.
BACKGROUND: The epidemiology, etiology, and management of head and neck cancer are evolving. Understanding the perspectives and priorities of nonresearchers regarding treatment uncertainties is important to inform future research. METHODS: Using the James Lind Alliance approach, patients, caregivers, and clinicians responded to a survey regarding their unanswered questions about treating and managing head and neck cancer. Distinct uncertainties were extracted from responses and sorted into themes. Uncertainties already answered in the literature were removed. Those remaining were ranked by patients and clinicians to develop a short list of priorities, which were discussed at a workshop and reduced to the top 10. RESULTS: One hundred sixty-one respondents posed 818 uncertainties, culminating in 77 for interim ranking and 27 for discussion at a workshop. Participants reached consensus on the top 10, which included questions on prevention, screening, treatment, and quality of life. CONCLUSION: Nonresearchers can effectively collaborate to establish priorities for future research in head and neck cancer.
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