Research priorities to improve the health of children and adults with dysphagia: a National Institute of Health Research and Royal College of Speech and Language Therapists research priority setting partnership

Abstract

ObjectiveTo conduct the first UK-wide research priority setting project informing researchers and funders of critical knowledge gaps requiring investigation to improve the health and well-being of patients with eating, drinking and swallowing disorders (dysphagia) and their carers.DesignA priority setting partnership between the National Institute of Health Research (NIHR) and the Royal College of Speech and Language Therapists using a modified nominal group technique. A steering group and NIHR representatives oversaw four project phases: (1) survey gathering research suggestions, (2) verification and aggregation of suggestions with systematic review research recommendations, (3) multistakeholder workshop to develop research questions, (4) interim priority setting via an online ranking survey and (5) final priority setting.SettingUK health services and community.ParticipantsPatients with dysphagia, carers and professionals who work with children and adults with dysphagia from the UK.ResultsOne hundred and fifty-six speech and language therapists submitted 332 research suggestions related to dysphagia. These were mapped to 88 research recommendations from systematic reviews to form 24 ‘uncertainty topics’ (knowledge gaps that are answerable by research). Four patients, 1 carer and 30 healthcare professionals collaboratively produced 77 research questions in relation to these topics. Thereafter, 387 patients, carers and professionals with experience of dysphagia prioritised 10 research questions using an interim prioritisation survey. Votes and feedback for each question were collated and reviewed by the steering and dysphagia reference groups. Nine further questions were added to the long-list and top 10 lists of priority questions were agreed.ConclusionThree top 10 lists of topics grouped as adults, neonates and children, and all ages, and a further long list of questions were identified by patients, carers and healthcare professionals as research priorities to improve the lives of those with dysphagia.

Understanding how primary care practitioners can be supported to recognise, screen and initially diagnose oropharyngeal dysphagia: protocol for a behavioural science realist review

“…The existing literature on interventions to support HCPs recognise, screen and initially diagnose OD may be limited. 64 The research team in collaboration with the stakeholder group discussed other fields of healthcare research with comparative HCP behaviour from which the review could learn from. Workshop discussions predominantly focused on interventions which have been implemented to support primary care HCPs to recognise, screen and initially diagnose dementia and/or cancer.…”

“…Table 3 provides inclusion and exclusion criteria using the Population, Intervention, Comparator, Outcome format, a four-part model which facilitates a well-defined search strategy. 69 Evidence from all clinical populations who present with OD will be included in the review; however, as the literature on OD is likely to be sparse, 64 we will also include literature from comparative fields in health research. Preliminary discussions in the prereview stakeholder workshop specified these comparative fields.…”

Validation and cultural adaptation of a Greek Version of Pediatric Eating Assessment Tool 10 (PEDI – EAT – 10) in Greek-Cypriot Parents

“…Clinical dysphagia questionnaires may vary depending on the target population (can be completed by health professionals, parents, and/or caregivers) and speci cally are differentiated to adults and children [17][18]. Most self-reported questionnaires have been developed originally for use in the adult population and secondly for use in in pediatric populations [19]. Furthermore, parental reporting of di culties during the feeding and swallowing procedure provide the opportunity to screen and assess more e ciently the appearance of penetration and aspiration symptoms of pediatric dysphagia [10,20].…”

Supporting safe swallowing of care home residents with dysphagia: How does the care delivered compare with guidance from speech and language therapists?

“…The RCSLT in conjunction with the National Institute of Health and Care Research (NIHR) has recently developed 10 research priorities for dysphagia research which include the impact of thickened fluids, caregiver's awareness of the difficulties associated with dysphagia and improving adherence to recommendations. There is a dearth of evidence as to whether guidance, as provided by SLTs, is translated into practice during mealtimes for residents with dysphagia (Pagnamenta et al., 2022). Observation of the nutrition and hydration care of residents with dysphagia is therefore needed to understand if recommendations made to support safe and effective mealtime plans are implemented and how these relate to the actual daily care delivered.…”