Editorial Perspective: Speaking up for developmental language disorder - the top 10 priorities for research.

Developmental language disorder (DLD) is one of the most common neurodevelopmental conditions, yet is chronically underserved, with far fewer children receiving clinical services than expected from prevalence estimates, and very little research attention relative to other neurodevelopmental conditions of similar prevalence and severity. This editorial describes a research priority-setting exercise undertaken by the Royal College of Speech and Language Therapists, which aims to redress this imbalance. From consultations with researchers, practitioners and individuals with lived experience, 10 research priorities emerge. Our goal is to share these priorities with the wider research community, to raise awareness and encourage research collaboration to improve outcomes for young people with DLD.

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.

OBJECTIVE: To 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. DESIGN: A 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. SETTING: UK health services and community. PARTICIPANTS: Patients with dysphagia, carers and professionals who work with children and adults with dysphagia from the UK. RESULTS: One 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. CONCLUSION: Three 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.

Involving Individuals with Developmental Language Disorder and their Parents/Carers in Research Priority Setting.

A protocol for involving individuals presenting with developmental language disorder (DLD) (iDLD) and their parents/carers (iDLDPC) in a research priority setting exercise is presented. iDLD have difficulties with communication skills, such as understanding language, word-finding and discourse. Such difficulties mean existing research priority setting protocols are difficult for iDLD to access, since they require sophisticated communication skills. Thus, a novel protocol for involving iDLD in these exercises is warranted. The same protocol is recommended for use with iDLDPC, to ensure accessibility. The protocol is presented in 4 steps. Step 1 describes a program of activities delivered by trained, specialist DLD speech and language therapists (SLTs) that prepares iDLD/iDLDPC for involvement. Step 2 outlines an approach to elicit iDLD/iDLDPC's opinions on research priorities. Steps 3 and 4 describe methods to analyze and integrate this data at multiple stages of the research priority setting process. 9 trained specialist DLD SLTs delivered steps 1 and 2. 17 iDLDs and 25 iDLDPCs consented to involvement. Opinions from all participants were elicited, and this data was used to influence the process and output of the exercise. An advantage of this protocol is its accommodation of the heterogeneity in support needs of iDLD/iDLDPC, through a menu of options, whilst also providing a structured framework. Due to the novelty of the protocol, the methods for data integration were developed by the research group. These are potential limitations of the protocol, and may bring the reliability and validity under scrutiny, which are yet to be tested. This protocol enables meaningful involvement of iDLD/iDLDPC in research priority setting and could be utilized for people with other kinds of speech, language or communication needs. Further research should evaluate the effectiveness of the protocol and whether it can be adapted for involvement of such populations in other research studies.