Title: Improving continence in children and young people with neurodisability: survey of current NHS practice and systematic review of effectiveness, cost-effectiveness and contextual factors that modify implementation of interventions
Funder: Department of Health and Social Care

Abstract: Design: Cross-sectional surveys with health and care professionals working with children and young people with neurodisability and parent carers of disabled children. Telephone interviews to gather complex information. Integrated systematic review. Setting: Hospital and community health care in England. Strategy for reviewing literature: Integrated systematic review of studies evaluating a) effectiveness, cost-effectiveness and/or implementation of interventions, and b) views, experiences and perceptions of families and/or health professionals using and delivering interventions to promote continence. Population: Children and young people with neurodisability aged up to 25 years. Inclusion/exclusion criteria: Focus is on promoting attainment of optimal continence not managing loss of continence associated with progressive neurodisability. Health technologies being assessed: Interventions aiming to improve continence of children and young people with neurodisability including assessment, structured toilet training programmes, products, equipment, medicines and surgery. Methods: We will conduct online surveys with members of key health professions to determine current clinical practice in the NHS for improving the continence of children and young people with neurodisability. We will ask about approaches to assessment of bladder and bowel health, continence capabilities and goals, identifying readiness for toilet training, interventions and how these are individualized. We expect some information to be complex to communicate; therefore we will conduct a limited number of telephone interviews. In parallel we will survey parent carers about their experiences using interventions to promote continence, perceptions of readiness for toilet training, factors influencing implementation of interventions, and acceptability of recommended strategies to them and their children. To conduct the surveys we will advertise and recruit participants through a wide variety of professional societies and special interest groups. We will advertise to parent carers through our links with the National Network of Parent Carer Forums and relevant charities. We will also use social network sites to link with potential participants through online communities (e.g. We Communities and parent carer online communities). Participants will be invited to register online and thereby consent to take part in the survey. Questionnaires will include generic questions asked to all registered participants, and other questions tailored to their specific professional roles or as parent carers. Questions will be determined, refined and piloted in consultation with our Professional Advisory Group and our PenCRU Family Faculty public involvement group. We will carry out an integrated systematic review of studies evaluating a) effectiveness, cost-effectiveness and/or implementation of interventions, and b) views, experiences and perceptions of families and/or health professionals regarding assessing readiness and implementing interventions. We will collate findings from the surveys and reviews and interpret them in consultation with expert professionals and the Family Faculty public involvement group. The work will enable us to determine and describe current clinical practice in the NHS for improving the continence of children and young people with neurodisability, summarise evidence for interventions and make recommendations for future research and practic

Lay abstract: Learning to manage going to the toilet independently is an important milestone in growing up. Being continent involves knowing you need to go, delaying until an appropriate place can be found, weeing and/or pooing, cleaning up afterwards and redressing. Children with special educational needs and disabilities may be slower to learn to manage going to the toilet, or they may need extra help. Many children with special educational needs and disabilities can become continent with training. Various things can influence if and when toilet training commences. A key issue is whether families and professionals think a child is ready and able to begin toilet training. Children are assessed by clinicians to see whether they are able to be trained and identify any related medical problems. Interventions that professionals recommend to improve continence include toilet training programmes, nappies and other products, aids and equipment, medicines and surgery. Currently it is uncertain which ways to assess and treat children with special educational needs and disabilities are best. Families and clinicians have recommended research on finding effective ways to promote continence for children with special educational needs and disabilities as a priority. We will establish advisory panels of expert professionals and family carers to help guide this study to ensure the findings are relevant and useful. We will consider any ways to assess and promote continence for children and young people with special educational needs and disabilities up to age 25 years. This age was selected to be consistent with existing special educational needs and disabilities (SEND) legislation and policies in the UK. This research has two parts. First, we want to find out how NHS staff assess and treat children with special educational needs and disability to help them become continent. We will conduct surveys with health professionals working with children with neurological conditions, and families who have experience using NHS services to promote continence. We will recruit widely through various professional societies and other networks. Survey questionnaires will be administered online, though we have capacity to gather more complex contributions by telephone. We will bring together results of all studies testing ways to assess and improve continence for children with special educational needs and disabilities. This is called a systematic review. It provides a comprehensive and unbiased summary of existing research. We will look for published research examining whether assessment and treatments are effective and value for money, and any research on how easy approaches are to deliver. We will also look for and include studies on the experiences of families or health professionals carrying out interventions to promote continence. We will assess how reliable the evidence is, and what it tells us. We will collate findings from the surveys and systematic review and ask families and expert professionals for their impressions of what we have found. We will discuss with them any gaps in the evidence and potential priority questions to address subsequently in future research. The work will enable us to describe current clinical practice in the NHS for improving continence of children and young people with special educational needs and disability, and summarise evidence for interventions. Finally we will make recommendations for future research and practice.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: NEUROLOGICAL