The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner's dysphagia, (3) the disconnect between carers' expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.

The interviews revealed the need for both greater access to services and a desire for services which address the multitude of issues faced by people with dysphagia following HNC in the post-treatment period. Speech and language therapists managing this caseload need to ensure post-treatment services are available and address not only the physical but also the emotional and psychosocial changes impacting people with dysphagia in order to assist them to adjust to, and live successfully with dysphagia. Further research should be conducted to support the development of innovative services and to highlight dysphagia-related survivorship issues to governing bodies/policy makers.

Rehabilitation services which focus only on impairment based management, will fail to fully meet the support needs of this clinical population.3

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Clinical levels of distress and reduced quality of life have been associated with caring for a person with dysphagia following head and neck cancer. The flow-on effects of dysphagia experienced by a carer or close family member can be understood as a third-party disability, which impacts on their functioning, activities and participation in the context of the environment and personal factors. Using the ICF to describe the indirect effects of dysphagia on the carer may help to guide the assessment and support of this population, and advocate for the inclusion of the concerns of the carer in dysphagia management.

Objectives/Hypothesis: The objectives of the study were to develop a mealtime experience self-assessment questionnaire that was head and neck cancer (HNC) survivors-driven and based on the International Classification of Functioning, Disability and Health (ICF) framework, and to identify common mealtime issues reported by HNC survivors.Study Design: Outcomes research. Methods: Mealtime issues reported by HNC survivors in prior research was synthesized and classified using the ICF framework to develop the content and structure of the Head and Neck Cancer Survivors' Assessment of Mealtimes (HNSAM). A total of 122 HNC survivors completed both HNSAM and M.D. Anderson Dysphagia Inventory (MDADI) to assess for concurrent validity, whereas 51% of participants completed a second HNSAM for test-retest reliability.Results: The HNSAM scores were significantly correlated with the MDADI scores. Dysphagic participants (n = 45) had significantly higher HNSAM scores than the nondysphagic participants (n = 77). Principal component analysis revealed three factors that matched with the HNSAM subscales. Good internal consistency (Cronbach's α = 0.72-0.96) and test-retest reliability (intraclass correlation = 0.76-0.91) were found. Both dysphagic and nondysphagic participants reported difficulties with saliva-related issues and were not able to enjoy food/drinks that they previously enjoyed.Conclusions: HNC survivors experience mealtime changes after cancer treatment. These initial validity data support the potential for the HNSAM to help HNC survivors' identify changes to the mealtime experience. Validation of the English version of the tool is now required.

The relationships observed between known dosimetric constraints and functional outcomes highlight the potential for dosimetric data to assist in prognosis and treatment. Systematic research is required to refine dosimetric parameters and the impact on functional outcomes.

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