Science News: Living With Dysphagia: A Survey Exploring the Experiences of Adults Living With Neuromuscular Disease and Their Caregivers in the United Kingdom

Published December 06, 2024

Science News

Submitted by: Pritikanta Paul, MD
Edited by: Nakul Katyal, MD

Citation: Allen J, Stone-Ghariani A, Quezada G, et al. Living with dysphagia: A survey exploring the experiences of adults living with neuromuscular disease and their caregivers in the United Kingdom. J Neuromuscul Dis. 2024;11(2):389-410. doi:10.3233/JND-230002

Summary: Dysphagia is prevalent in adults with neuromuscular disease (NMD), leading to complications like malnutrition and pneumonia, impacting quality of life. Challenges in healthcare delivery highlight the need for patient-centered dysphagia management pathways and research.

This cross-sectional study used surveys to explore dysphagia experiences in NMDs. One survey targeted individuals with NMDs, featuring 40 mostly multiple-choice questions covering various aspects of their condition. Another survey, with 43 questions, focused on caregivers who had cared for someone with NMD and swallowing issues in the past 18 months. Participants and caregivers aged 18 years or older, self-screened for eligibility and completed the surveys online.


A total of 555 responses were received, with 248 surveys excluded due to incomplete data. The remaining 310 surveys included 272 from individuals living with NMD and 38 from caregivers.

The survey findings across various NMD groups revealed a consistent challenge with swallowing solids compared to liquids, consistent with existing research on dysphagia in NMD. However, they also highlighted distinct variations in symptom prevalence among these groups, underscoring the unique characteristics, severity, and progression of dysphagia within each disease category, as documented in prior studies. Salient findings included patients with spinal muscular atrophy (SMA) reported longer mealtimes, possibly due to broader NM impairments affecting hand and arm function, complicating self-feeding. Respiratory muscle weaknesses in SMA may increase choking risks, while cognitive deficits in conditions like myotonic dystrophy type 1 (DM1) influence dysphagia perception and management. Authors suggest tailored dysphagia assessments are crucial to meet the diverse needs of each NMD group, suggesting a need for categorization based on underlying conditions.

Forty percent of participants with NM dysphagia lacked healthcare input, attributed to factors like prioritization of other health issues, patient self-management choices, and low awareness of dysphagia's impact. Among those who received healthcare, proactive assessment varied significantly between disease groups, with higher rates in DM1 (57.1%) compared to SMA (5.3%).

Additional findings included anxiety and caregiver concern regarding dysphagia are pronounced (3 times more than patients), with caregivers of individuals with DM1 and SMA showing heightened anxiety levels. The authors share that caregiver burden, influenced by the challenges of chronic disease care, emphasizes the need for comprehensive dysphagia assessments that consider both physical and psychological impacts. 

In summary, adults with NMD receive insufficient information about potential swallowing difficulties before experiencing them. Both adults with NMDs and their caregivers desire earlier access to specialists and training to better manage swallowing difficulties.

The authors acknowledge limitations such as potential recall bias and survey response bias, which might lead to an overestimation of dysphagia's impact. Additionally, incomplete survey data and low representation from certain NMD groups may affect the study's generalizability and depth of insights.

Comments: The study highlights the profound impact of dysphagia on individuals with NMDs and their caregivers, emphasizing significant gaps in healthcare assessment and education. It reveals that a substantial number of NM patients experiencing dysphagia symptoms have not received professional evaluation, underscoring the need for improved healthcare access and proactive management strategies. While dysphagia symptoms share commonalities across NMD groups, there are unique aspects specific to each disease, necessitating tailored approaches. 

This article underscores the importance for the AANEM audience to recognize and manage dysphagia promptly and effectively in patients with NMDs. It highlights the critical role of healthcare providers in improving patient outcomes and supporting caregivers faced with dysphagia-related challenges.

 

 

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