Dysphagia and Quality of Life, Participation, and Inclusion Experiences and Outcomes for Adults and Children With Dysphagia: A Scoping Review

Abstract

Purpose: Research shows that dysphagia impacts quality of life negatively, but the nature of these impacts is not well understood. This review article aims to examine the impacts of dysphagia and its interventions on mealtime-related quality of life, participation, and inclusion for people with dysphagia. Method: The protocol for this scoping review was published in July 2019 and involved a search of five scientific databases using dysphagia and quality of life–related terms. Results: In total, 106 studies were included in this review article. A qualitative metasynthesis demonstrated that dysphagia had various negative impacts on quality of life, particularly in populations with severe dysphagia. Dysphagia interventions had a range of positive impacts on quality of life; however, modifying food texture also had negative impacts. Most studies ( n = 95) included adults with acquired dysphagia. Only seven studies included people with lifelong conditions, including cerebral palsy or intellectual disability, and only four studies included children. Almost half of the studies ( n = 44) used quantitative instruments, including the Swallowing Quality of Life questionnaire or the Eating Assessment Tool, to measure the impact of dysphagia on quality of life, and few studies used qualitative approaches. Conclusions: There are both positive and negative impacts of dysphagia and dysphagia-related interventions on quality of life, participation, and inclusion. Most research is quantitative and limited to adults with acquired dysphagia. Qualitative and longitudinal studies that include populations with lifelong disability and children are needed to determine how dysphagia and its interventions impact quality of life across conditions and over the life span. Supplemental Material: https://doi.org/10.23641/asha.18862292

The true cost of dysphagia on quality of life: The views of adults with swallowing disability

“…They may have substantial need for self-advocacy if their needs are not met in various mealtime situations, through lack of knowledge or experience of others in relation to dysphagia (Warren & Manderson, 2013). This is important as prior research including the views and perspectives of those with lifelong dysphagia is limited (Smith et al, 2022a). This research built upon the findings presented by Balandin et al (2009) by presenting facilitators that may assist in improving quality of life for people with dysphagia of a variety of aetiologies.…”

Exploring salivary biomarkers and swallowing perceptions in Sjogren's syndrome: A case–control feasibility study

“…25 Oral intake is intrinsically linked to quality of life. 26 In those with SS, quality of life is inversely correlated with disease and dysphagia severity. 14,27 Furthermore, perceived oral dryness in SS may precede salivary protein changes that influence swallowing sensation and perception, and by extension, quality of life.…”

“…Oral intake is intrinsically linked to quality of life 26 . In those with SS, quality of life is inversely correlated with disease and dysphagia severity 14,27 .…”

Transadaptation and Validation of the Telugu Version of the Dysphagia Handicap Index

“…Dysphagia has multiple consequences and negatively affects the QoL of a person with dysphagia and their family members. Despite this, the literature on the effect of dysphagia on QoL is limited (Smith et al, 2022). Kim et al (2020) investigated the dysphagia-related QoL in stroke patients.…”

“…Balandin et al (2009) emphasized considering mealtime as an essential factor in assessing the QoL of a person with dysphagia. For example, various studies (Wu et al, 2020;Groher & Crary, 2016;Steele et al, 2015) recommended using texture modification food to reduce the risk of choking, but it may increase the duration of mealtime (Smith et al, 2022). Dysphagia may also hamper respiratory health, leading to increased breath shortness during mealtimes, breathing-swallowing discoordination, and delayed swallowing (Yagi et al, 2017;Broz & Hammond, 2014).…”