CASL

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Living with Dysphagia: A Survey Exploring the Experiences of Adults Living with Neuromuscular Disease and their Caregivers in the United Kingdom
(IOS Press, 2024-03-05) Allen, Jodi; Stone-Ghariani, Aoife; Quezada, Gabriella; Banks, Donna; Rose, Frank; Knight, William; Newman, Jill; Newman, William; Anderson, Philip; Smith, Christina
Background: Dysphagia is common in adults living with neuromuscular disease (NMD). Increased life expectancy, secondary to improvements in standards of care, requires the recognition and treatment of dysphagia with an increased priority. Evidence to support the establishment of healthcare pathways is, however, lacking. The experiences of people living with NMD (pplwNMD) and their caregivers are valuable to guide targeted, value-based healthcare. Objective: To generate preliminary considerations for neuromuscular dysphagia care and future research in the United Kingdom, based on the experiences of those living with, or caring for, people with NMD. Methods: Two surveys (one for adults living with NMD and dysphagia, and a second for caregivers) were co-designed with an advisory group of people living with NMD. Surveys were electronically distributed to adults living with NMD and their caregivers between 18th May and 26th July 2020. Distribution was through UK disease registries, charity websites, newsletters, and social media. Results: Adults living with NMD receive little information or education that they are likely to develop swallowing difficulties. Most respondents report wanting this information prior to developing these difficulties. Difficulties with swallowing food and medication are common in this group, and instrumental assessment is considered a helpful assessment tool. Both adults living with NMD and caregivers want earlier access to neuromuscular swallowing specialists and training in how best to manage their difficulties. Conclusions: Improvement is needed in the dysphagia healthcare pathway for adults living with NMD to help mitigate any profound physical and psychological consequences that may be caused by dysphagia. Education about swallowing difficulties and early referral to a neuromuscular swallowing specialist are important to pplwNMD and their caregivers. Further research is required to better understand the experiences of pplwNMD and their caregivers to inform the development of dysphagia healthcare pathways.
Automated assessment of hyoid movement during normal swallow using ultrasound
(Royal College of Speech and Language Therapists, 2022-03-14) Ma, Joan K-Y; Wrench, Alan A.
Background The potential for using ultrasound by speech and language therapists (SLTs) as an adjunct clinical tool to assess swallowing function has received increased attention during the COVID-19 pandemic, with a recent review highlighting the need for further research on normative data, objective measurement, elicitation protocol and training. The dynamic movement of the hyoid, visible in ultrasound, is crucial in facilitating bolus transition and protection of the airway during a swallow and has shown promise as a biomarker of swallowing function.
Translating ultrasound into clinical practice for the assessment of swallowing and laryngeal function: A speech and language pathology-led consensus study
(Springer, 2022-02-24) Allen, Jodi E.; Clunie, Gemma; Ma, Joan K-Y; Coffey, Margaret; Winiker, Katharina; Richmond, Sally; Lowell, Soren Y.; Volkmer, Anna
Ultrasound (US) has an emerging evidence base for the assessment of swallowing and laryngeal function. Accessibility and technological advances support the use of US as a clinical assessment tool; however, there is insufficient evidence to support its translation into clinical practice. This study aimed to establish consensus on the priorities for translation of US into clinical practice for the assessment of swallowing and laryngeal function. Nominal Group Technique (NGT) was used as a formal method of consensus development. Clinicians and academics, all members of an international US working group, were invited to participate in the study. Two NGT meetings were held, where participants silently generated and then shared ideas. Participants anonymously ranked items. Rankings were aggregated before participants re-ranked items in order of priority. Discussions regarding rankings were recorded and transcribed to inform analysis. Member-checking with participants informed the final analysis. Participants (n = 15) were speech and language pathologists, physiotherapists and sonographers representing six countries. Fifteen items were identified and prioritised 1–13 (including two equally ranked items). Reliability, validity and normative data emerged as key areas for research while development of training protocols and engagement with stakeholders were considered vital to progressing US into practice. Analysis revealed common themes that might be addressed together in research, in addition to the ranked priority. A measured approach to the translation of US into clinical practice will enable effective implementation of this tool. Priorities may evolve as clinical and professional contexts shift, but this study provides a framework to advance research and clinical practice in this field.

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