Introduction | 15 1 General introduction The experience of patients with head and neck cancer (HNC), like Mr. T.’s story, begins a challenging journey. Initial encounters often involve consultations with a head-and-neck surgeon, a radiation oncologist, and occasionally, a medical oncologist and dentist. Additionally, patients will interface with various allied health professionals, including speech-language therapists (SLPs), dieticians, and head-and-neck oncology nurses. Given the aggressive nature of HNC, there exists a pressing sense of urgency. In the midst of numerous consultations with various specialists, patients face the heavy burden of their diagnosis and its emotional impact, while considering their treatment options, which could even include choosing not to undergo treatment at all. In this thesis, we delve into the multifaceted landscape of HNC care, exploring the challenges faced by patients and healthcare professionals alike. Through an exploration of shared decision-making dynamics and rehabilitation strategies, we aim to contribute to a deeper understanding of HNC management. With this introduction, I will guide you through some key aspects crucial for comprehending the contents of this thesis. Epidemiology of head and neck cancer HNC is a rare type of cancer with around 3000 diagnoses per year in the Netherlands1. It constitutes a diverse group of cancers affecting the oral cavity, pharynx, larynx, paranasal sinuses, nasal cavity, salivary glands and the unknown primary tumor. The epidemiology of head and neck tumors is intricate and influenced by various factors, including geographical location, lifestyle choices, and exposure to risk factors. The most common risk factors associated with HNC include tobacco use, alcohol consumption, human papillomavirus (HPV) infection, and Epstein-Barr virus (EBV) infection. Men are diagnosed at a significantly higher rate than women, with ratios typically falling between 2:1 and 4:12. HNC is more common in older individuals, with a mean age of 62 years. However, due the rising incidence of HPV-associated oropharyngeal tumors, the number of younger individuals is also rising3. In the Netherlands, more than 1000 patients decease each year due to HNC4. Survival is related to tumor stage, where the lower the stage at diagnosis, the higher the survival rates are. The TNM staging system, ranging from I to IV, plays a pivotal role in assessing the extent of disease and guiding treatment decisions in HNC5. For most
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