Investigating the impact of dysphagia on the quality of life of individuals with ALS and their respective caregivers in Malta

Abstract

This study investigates the adverse implications of dysphagia on the quality of life of people with Amyotrophic Lateral Sclerosis (ALS) and their primary caregivers in Malta. The study encompassed a total of 10 participants: three individuals with ALS and dysphagia, two individuals with ALS without the presence of dysphagia, and five primary caregivers. This study employed two research tools: the Swallowing Quality of Life Questionnaire (SWAL-QOL) and the Quality of Life – Caregiver Questionnaire (QoL-CQ). The SWAL-QOL is a tool developed to assess the ramifications of oropharyngeal dysphagia on an individual's quality of life relating to an array of domains, whereas the QoL-CQ is a tool that evaluates the quality of life from the caregiver’s perspective. Through the SWAL-QOL data, the quality of life of individuals with ALS and dysphagia could be juxtaposed with those individuals without dysphagia. This quantitative data was also contrasted in relation to three independent variables: (1) the presence of dysphagia; (2) the sex of the participant; and (3) the place of residence. The quantitative and qualitative data collected from the QoL-CQ were analysed by comparing responses from caregivers of individuals with ALS and dysphagia against caregivers of individuals without dysphagia. The findings indicate that dysphagia has a detrimental effect on several QoL domains of both individuals with ALS and their primary caregivers. The qualitative responses of the QoL-CQ yielded three key themes: caregiver burden, difficulties faced during meal preparation, and increased negative emotions.