Dysphagia in head and neck cancer patients in Kuwait

Abstract

PhD ThesisIntroduction: Head and Neck Cancer (HNC) and its treatment often result in severe functional impairments, with dysphagia and related morbidities being serious and wellrecognised complications in the acute, chronic and late stages. These complications contribute to a decreased quality of life and decreased overall HNC survival. An active surveillance of swallowing function using appropriate swallowing outcome measures is needed throughout the continuum of care. HNC dysphagia has not been studied previously in Kuwait. Aims: The overall aim of this thesis is to investigate HNC dysphagia in Kuwait, with a longterm view to improve quality of life and reduce morbidity. Methods and results: Five studies were conducted using different research designs. The first study aimed to investigate the prevalence of HNC dysphagia. The results suggest that dysphagia is not properly assessed and therefore may be under-reported. The second study explored the experiences and unmet needs of patients with HNC in Kuwait using qualitative interviews. The interviews revealed that patients often experience adverse feelings as a result of their functional and physical pain, and they employ different strategies to deal with their symptoms. Furthermore, the findings suggest that patients have substantial unmet informational and supportive care needs. Studies three to five aimed to further explore swallowing outcome measures in order to develop a multi-dimensional Swallowing Outcomes Package to systematically collect outcomes for HNC patients in Kuwait. The Package comprises: the MD Anderson Dysphagia Inventory (MDADI), a patient self-report tool, which was translated and culturally adapted and showed satisfactory psychometric properties. Diet scales, and a measure of swallowing performance (the 100mL Water Swallow Test (WST)). Preparatory work established the factor structure of the MDADI and the minimal clinically important difference for the 100mL WST. Conclusion: This study identified gaps in HNC dysphagia management in Kuwait, and it highlights the importance of the systematic collection of swallowing outcomes to understand the impact of cancer treatments, monitor changes over time, and improve quality of life and decrease morbidit