Living with Dysphagia: A Survey Exploring the Experiences of Adults Living with Neuromuscular Disease and their Caregivers in the United Kingdom.

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.

Chin tuck against resistance exercise with feedback to improve swallowing, eating and drinking in frail older people admitted to hospital with pneumonia: protocol for a feasibility randomised controlled study.

BACKGROUND: Swallowing difficulties (dysphagia) and community-acquired pneumonia are common in frail older people and maybe addressed through targeted training of the anterior neck musculature that affects the swallow. We have developed a swallowing exercise rehabilitation intervention (CTAR-SwiFt) by adapting a previously established swallowing exercise to ensure patient safety and ease of execution in the frail elderly population. The CTAR-SwiFt intervention consists of a feedback-enabled exercise ball that can be squeezed under the chin, with real-time feedback provided via a mobile application. The aim of this study is to evaluate the feasibility of assessing the effectiveness of the CTAR-SwiFt intervention in reducing dysphagia and community-acquired pneumonia, prior to a larger-scale multi-centre randomised controlled trial. METHODS: We will recruit 60 medically stable patients over the age of 75 years who have been admitted with a diagnosis of pneumonia to the acute frailty wards at two participating hospitals in the UK. Study participants will be randomised into one of three groups: standard care, low intensity (once daily) CTAR-SwiFt exercise or high intensity (twice daily) CTAR-SwiFt exercises. The intervention period will last for 12 weeks, the final follow-up assessment will be conducted at 24 weeks. We will assess the feasibility outcomes, including rates of participant recruitment and retention, compliance with the exercise regime and adverse incidents. Additionally, we will assess the usability and acceptability of the intervention device and the performance of different clinical outcome measures (e.g. chin tuck strength, Functional Oral Intake Scale, SWAL-QOL, EQ-5D and swallow speed). A sub-sample of study participants will complete videofluoroscopic assessments of swallowing function before and after the intervention to evaluate the physiological changes (e.g. bolus flow rates, laryngeal elevation, base-of-tongue retraction). CONCLUSIONS: By improving the ability to swallow, using our chin tuck exercise intervention, in frail older patients admitted to hospital with pneumonia, it is anticipated that patients' oral intake will improve. It is suggested that this will further impact clinical, patient and healthcare economic outcomes, i.e. reduce the need for supplemental feeding, improve patient satisfaction with oral intake and swallowing-related quality of life, decrease the occurrence of chest infections and reduce hospital admissions and related healthcare costs. TRIAL REGISTRATION: ISRCTN, ISRCTN12813363 . Registered on 20 January 2020.