The development of a decision aid for patients with operable oropharyngeal carcinoma in the Netherlands - A mixed methods study

Anne N Heirman; Richard Dirven; Lisette van der Molen; Willem H Schreuder; Frank Hoebers; Jimmie Honings; Abrahim Al-Mamgani; Remco de Bree; Simone E J Eerenstein; Gyorgy B Halmos; Michiel W M van den Brekel

doi:10.1016/j.oraloncology.2023.106677

The development of a decision aid for patients with operable oropharyngeal carcinoma in the Netherlands - A mixed methods study

Oral Oncol. 2024 Feb:149:106677. doi: 10.1016/j.oraloncology.2023.106677. Epub 2023 Dec 23.

Affiliations

¹ Department of Head-and-Neck Oncology and Surgery, Netherlands Cancer Institute - Antoni van Leeuwenhoek, Amsterdam, the Netherlands.
² Department of Radiation Oncology (Maastro), GROW School for Oncology and Reproduction, Maastricht University Medical Centre, Maastricht, the Netherlands.
³ Department of Otorhinolaryngology/Head and Neck Surgery, Radboud University Medical Center, Nijmegen, the Netherlands.
⁴ Department of Radiation Oncology, The Netherlands Cancer Institute - Antoni van Leeuwenhoek, Amsterdam, the Netherlands.
⁵ Department of Head and Neck Surgical Oncology, University Medical Center Utrecht, Utrecht, the Netherlands.
⁶ Department of Otolaryngology/Head and Neck Surgery, Amsterdam University Medical Center, Amsterdam, the Netherlands.
⁷ Department of Otolaryngology/Head and Neck Surgery, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands.
⁸ Department of Head-and-Neck Oncology and Surgery, Netherlands Cancer Institute - Antoni van Leeuwenhoek, Amsterdam, the Netherlands; Department of MaxilloFacial Surgery, Amsterdam University Medical Center. Amsterdam, the Netherlands; Amsterdam Center of Language and Communication, University of Amsterdam, Amsterdam, the Netherlands. Electronic address: m.w.m.vandenbrekel@uva.nl.

PMID: 38142550
DOI: 10.1016/j.oraloncology.2023.106677

Abstract

Objective: The aim of this project is to create an interactive online patient decision aid (PDA) for oropharyngeal cancer (OPSCC) patients, eligible for transoral (robotic) surgery with an ultimate goal to assist both physicians and patients in making treatment choices.

Materials and methods: Following the International Patient Decision Aid Standards, a mixed-methods approach was employed. The study involved semi-structured in-depth interviews with patients and physicians, thinking-out-loud sessions, and study-specific questionnaires. Thematic coding and analysis were conducted on verbatim transcriptions of audio-recorded interviews.

Results: The PDA drafts were evaluated by twenty OPSCC survivors and twenty multidisciplinary specialists. Significant revisions were made after phase 1 to enhance readability and reduce text, whilst incorporating videos and graphics. Following all phases, both patients and specialists rated the PDA as comprehensible, feasible, and a valuable addition to regular counseling.

Conclusion: This study showcases the development of a PDA for early stage oropharyngeal cancer patients considering surgery and radiotherapy options. The decision aid emphasizes the disparities in short- and long-term side effects between the two treatments. Patients and physicians found the decision aid to be understandable, user-friendly, and helpful for future patients. The PDA is available on https://beslissamen.nl/.

Keywords: Communication; Counseling; Head and neck cancer; Human Papilloma Virus; Oropharyngeal cancer; Shared decision-making.

MeSH terms

Carcinoma*
Decision Support Techniques
Humans
Netherlands
Oropharyngeal Neoplasms* / radiotherapy
Oropharyngeal Neoplasms* / surgery
Robotic Surgical Procedures*