PDA Development for Oropharynx Cancer | 149 6 Introduction There has recently been a shift in the epidemiology of oropharyngeal squamous cell carcinoma (OPSCC) in the Western world. Formerly, tobacco and alcohol were the main risk factors, but prevention campaigns have reduced their prevalence1, 2. At the same time, human papillomavirus (HPV) has emerged as a new risk factor, causing a significant increase in the incidence of OPSCC3, 4. HPV-related tumors are now responsible for most (70%) OPSCCs in Europe5. HPV-positive early stage OPSCC patients, typically younger and healthier, are expected to have excellent long-term survival. Nowadays the most applied treatment modalities for early-stage OPSCC are either radiotherapy to the oropharynx and neck, or transoral (robotic) surgery (TO(R) S) including a neck dissection if indicated. Single modality treatment is preferred for early-stage OPSCC to minimize morbidity and costs6. To date, retrospective studies have found no significant difference in survival and oncologic outcomes among these treatments3, 7. Prospective data on long-term functional outcomes reveal similar quality of life (QoL) outcomes, but differences in toxicities6, 8. But even with these new insights, patient and clinicians face the difficulty and complexity of appropriate treatment selection to meet individual patient preferences. This emphasizes the importance of shared decision-making (SDM). Patient decision aids (PDAs) are interventions supporting patients in their decision-making process and have proven to be effective in making patients more knowledgeable, better informed, show insight in patient values and more accurate risk perception9, 10. There are several existing PDAs for different cancer types. In Head-and-Neck Oncology there is a PDA for advanced laryngeal carcinoma developed in our center11, and a PDA for oropharyngeal cancer from the United States12. Since patients’ values, preferences but also treatment guidelines are dependent on country and culture, we decided to develop our own PDA for patients with early stage OPSCC that are eligible for curative treatment with either transoral (robotic) surgery or radiation therapy. This study describes the assessment of the preferences and needs of early stage OPSCC patients and their healthcare providers, facing a single modality treatment choice, in The Netherlands. A PDA was developed, and its usability and feasibility was tested to make the PDA usable in daily practice.
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