The impact of dysphagia on the patient in the survivorship phase of head and neck (H&N) cancer is not well understood. The current study adopted a patient centred, qualitative approach to examine the lived experience of dysphagia from the patients’ perspective in the months and years following treatment. It forms part of a larger project which will map issues to the World Health Organization’s International Classification of Functioning, Disability, and Health (ICF), to inform optimal dysphagia assessment and establish future care models for dysphagic patients during the survivorship phase.
A demographically diverse group of 24 participants who had undergone curative non-surgical treatment for a mucosal H&N cancer in the past five years were recruited using maximum variation sampling. All participants took part in a semi-structured in-depth interview where they were encouraged to speak about the full impact of dysphagia. Thematic analysis was utilised to identify key phrases and themes that emerged from the transcripts.
Thematic analysis revealed information rich descriptions of the profound impact associated with food as a result of treatment for H&N cancer. The main themes identified were: 1) the physical impacts of treatment on swallowing; 2) highly emotive responses to chronic dysphagia; 3) altered perceptions and changed appreciation of food; and 4) enforced personal and lifestyle changes. Preliminary mapping across ICF domains confirms both activity and participation level deficits, in addition to body functions and structures with strong influences of personal and environmental factors.
These data confirms the clinical belief that dysphagia has a negative and multi-faceted impact on the patient in the survivorship phase. New assessment methods are required for long-term monitoring of patients with dysphagia which encapsulate environmental and personal factors. Data also highlights the need for new models of long term support to help individuals adjust to changing physical states and to enhance psycho-social adjustment.