Pretreatment information on dysphagia: exploring the views of head and neck cancer patients

Context: Swallowing difficulties (dysphagia) are a common acute and chronic side effect of head and neck cancer (HNC) treatment. Dysphagia is associated with medical concerns such as malnutrition and pulmonary health as well as quality of life outcomes. Providing information on the likely changes to swallowing is an important component of pretreatment preparation. There is little research providing the patients' perspective in this area.

Objectives: This is a qualitative study to describe patients' views on pretreatment information regarding changes to eating, drinking, and swallowing after chemoradiotherapy treatment for HNC.

Methods: A purposive sample of 24 patients with HNC with a range of post-treatment dysphagia severity, up to two years after chemoradiotherapy, was selected to participate in focus groups or semistructured interviews. Thematic analysis was conducted by two researchers, and results were verified with three participants.

Results: Half of the participants presented with mild dysphagia, with the remainder having moderate to severe dysphagia. Mean age was 59 years, and mean time post-treatment was 10 months. Data were grouped into three main themes and subthemes: expectations about treatment outcomes and whether information correlated with pretreatment information; presentation of information, including the format and delivery; and the difficulties with absorption and retention of information.

Conclusion: Patients require information on the impact and prognosis for their swallowing ability. There was a general preference for verbal information, from someone knowledgeable about dysphagia. However, there are also individual preferences for the manner and pace at which this information is delivered. Further research is indicated to explore ways of providing information that is individually tailored to patients' needs and preferences.