Introduction
The aim of the Health Technology Assessment (HTA) Programme is to ensure that high quality research information on the clinical effectiveness, cost-effectiveness and broader impact of healthcare treatments and tests are produced in the most efficient way for those who plan, provide or receive care from NHS and social care services. The commissioned workstream invites applications in response to calls for research on specific questions which have been identified and prioritised for their importance to the NHS, patients and social care.
Research question
What is the clinical and cost-effectiveness of interventions to improve self-care of children and young people with neurodisability?
- Intervention: Applicants to define and justify, taking into account the varied developmental levels of their proposed population. The intervention should be currently in use within the UK, or one which could be integrated into existing care pathways in NHS practice.
- Patient group: Children and young people with neurodisability (applicants to define and justify).
Applications are encouraged which include recruitment from geographic populations with high disease burden which have been historically underserved by research activity in this field. - Setting: Any appropriate setting.
- Comparator: Usual care (applicants to define and justify).
- Study design: A randomised controlled trial with an internal pilot phase to test key trial processes such as recruitment and adherence. Clear stop/go criteria should be provided to inform progression from pilot to full trial.
- Important outcomes: Participation in self-care in terms of carrying out personal care tasks/activities of daily living at home, in school and the community, and independence in self-care (applicants to define and justify); patient quality of life.
Other outcomes: Caregiver quality of life and family wellbeing; patient and caregiver acceptability; social care, service and resource use; transition from paediatric to adult services; intervention manualisation; cost-effectiveness; adverse outcomes.
Existing Core Outcomes should be included amongst the list of outcomes unless a good rationale is provided to do otherwise. Applicants are encouraged to report recruitment and findings disaggregated by sex (and other demographic factors where relevant). - Minimum duration of follow-up: 12 months. Depending on the population and intervention, follow-up may also be appropriate immediately or shortly after the intervention. Applicants to define and justify.
Longer-term follow up: If appropriate, researchers should consider obtaining consent to allow potential future follow up through efficient means (such as routine data) as part of a separately funded study.
Rationale
Neurodisabilities are congenital or acquired long-term conditions which are generally due to impairment in the nervous or musculoskeletal systems. Neurodisabilities include acquired brain injury, epilepsy, learning disability, visual impairment, and motor disorders such as cerebral palsy. Children with neurodisability are the largest group of disabled children and young people (CYP), with an estimated prevalence of 3-4% of children in England.
CYP with disabilities can lead fulfilling lives but may experience limited social participation and poorer health, educational and employment outcomes. Living with a neurodisability has a significant impact on the lives of CYP, their quality of life, and also that of their families, particularly when it comes to self-care. Self-care covers everyday tasks such as personal hygiene, nutrition, engagement in leisure and sporting activities, and self-medication, as well as being able to make meaningful choices, and direct self-care provided by other people. It is important that CYP with a neurodisability have support to develop their self-care skills and abilities to become as independent as possible, for as long as possible.
There are many available interventions which aim to improve one or more aspects of self-care for CYP with neurodisabilities. However, there is a lack of evidence on their clinical benefits, no cost-effectiveness evidence, and no national guidelines. There is variable access geographically to different interventions, and the support that CYP and their families can receive. As such, the HTA Programme wishes to commission research to establish the clinical and cost-effectiveness of interventions to improve self-care of CYP with neurodisability.
Applications should be co-produced, demonstrating an equal partnership with service commissioners, providers and service users (including carers) in order to provide evidence and actionable findings of immediate utility to decision-makers and service users, and should be embedded throughout the life cycle of the project from application to completion. Applicants may wish to consult the NIHR INVOLVE guidance on co-producing research.
Additional commissioning brief background information
A background document is available that provides further information to support applicants for this call. It is intended to summarise what prompted the call and the existing evidence base, including relevant work from the HTA and wider NIHR research portfolio. It was researched and written on the basis of information from a search of relevant sources and databases, and in consultation with a number of experts in the field. If you would like a copy please email htaresearchers@nihr.ac.uk.
Making an application
If you wish to submit a Stage 1 application for this call, the online application form can be found on the Funding opportunities page. To select this call, use the filters on the right of the screen or search using the call name and/or number.
Your application must be submitted on-line no later than 1pm on the 30 November 2022. Applications will be considered by the HTA Funding Committee at its meeting in January 2023.
Guidance notes and supporting information for HTA Programme applications are available.
Important: Shortlisted Stage 1 applicants will be given eight weeks to submit a Stage 2 application. The Stage 2 application will be considered at the Funding Committee in May 2023.
Applications received electronically after 1300 hours on the due date will not be considered.
For commissioned topics, the Programme strongly discourages the practice of the same co-applicant joining more than one competing team. There may be unusual circumstances where the same person could be included on more than on application eg a lead from a named charity or a unique national expert in a condition.
For such exceptions (i) each application needs to state the case as to why the same person is included (ii) the shared co-applicant should not divulge application details between teams and (iii) both teams should acknowledge in their application that they are aware that one of their co-applicants is part of a competing application and that study details have not been shared.
Should you have any queries please contact us by email at htacommissioning@nihr.ac.uk.