Increasing understanding of risk factors and outcomes associated with continence problems in children and adolescents

Context of the research: Continence problems (bedwetting, daytime wetting and soiling) are among the most common chronic conditions of childhood. While the prevalence of continence problems decreases with age, many children are still affected well into adolescence. There is currently little evidence-based information from epidemiological studies on the factors that distinguish between children who attain bladder and bowel control as expected and those who continue to suffer from wetting and soiling into later childhood and adolescence. Empirical findings from large cohorts could substantially increase understanding of risk factors for persistence of continence problems and aid identification of children who are at risk of chronic incontinence. Persistence of continence problems into adolescence is likely to lead to considerable distress for young people and their families. However, there are no empirical studies assessing the impact of incontinence on a wide range of outcomes in adolescence. Evidence-based knowledge of the impacts of incontinence on young people is needed to tackle their complex needs and to inform interventions.

Aims and objectives: The proposed project will investigate risk factors and outcomes associated with continence problems in children and adolescents from a large contemporary UK cohort- The Avon Longitudinal Study of Parents and Children (ALSPAC). Specifically, we will examine whether factors relating to the child and family are associated with different patterns of development (developmental trajectories) of bladder and bowel control in almost 11,000 children from early through to late childhood (4 to 9 years). These trajectories describe different patterns of development of bladder and bowel control, including normal development, delayed attainment of bladder/bowel control, persistent wetting/soiling, and relapse after an extended period of continence. We will investigate whether particular patterns of incontinence in childhood (e.g. high frequency and/or persistent incontinence) are less likely to resolve by adolescence. We will also examine whether persistence of incontinence into late childhood and adolescence is associated with adverse outcomes for mental health, psychosocial functioning, educational attainment and goals/aspirations for the future.

Potential applications and benefits: We anticipate that the research will lead to significant new understanding of the aetiology of continence problems. Greater awareness of risk factors associated with persistent continence problems is likely to result in improved identification, earlier intervention, faster referral- to-treatment times and increased likelihood of delivering services to those children who are most likely to benefit. Timely referral and management of continence problems should help to improve quality of life for children, young people and their families and reduce adverse personal impacts of continence problems on young peoples' lives. Greater awareness of co-morbid conditions such as mental health problems will inform interventions, leading to better outcomes for children and young people and their parents/carers.

We propose a mixed methods approach, including secondary analysis of ALSPAC data and a qualitative study of young people with continence problems to identify risk factors and outcomes associated with incontinence. We will use longitudinal data on wetting and soiling from almost 11,000 children aged 4 - 9 years to identify latent classes (developmental trajectories) of incontinence. The latent classes, identified using Longitudinal Latent Class Analysis (LLCA), will incorporate frequency of wetting/soiling in the models.
We will use the latent classes as outcome variables to examine their association with time-invariant covariates using multinomial models incorporating class assignment probabilities to reflect the uncertainty in group membership. We will also explore methods for relating time-varying covariates to the latent classes.
We will then use the latent classes of incontinence as exposure variables to examine their association with adolescent outcomes including self-reported wetting/soiling at 14 years and a range of adverse psychosocial outcomes at 14-15 years. We will use weighted logistic regression (Stata) to estimate the odds ratios associated with the adolescent outcomes for each of the atypical latent classes in relation to the normative class.
We will conduct semi-structured qualitative interviews to examine the impact of incontinence in young people in relation to their mental health, relationships, social activities, education/school attainment and goals/aspirations for the future. The interview transcripts and free text from the survey will be analysed with NViVO software using iterative thematic analysis to explore salient issues, using constant comparison techniques.
We anticipate that the findings of the proposed research will aid identification of children at risk of chronic incontinence and will contribute to patient-centered, age appropriate information resources on issues relating to incontinence in young people.

Who will benefit:
Children and young people with continence problems and their parents and carers.
Children's continence services.
Health professionals who work with children and young people with continence problems (paediatricians, urologists, gastroenterologists, paediatric continence nurses, child psychiatrists and clinical psychologists).
GPs, health visitors.
ERIC, policy makers, commissioners, managers, regulators, stakeholders working on children's and young people's health.
NICE.
Organisations supporting policy makers/commissioners e.g. ChiMat.
Educational services (teachers, school nurses).

How will they benefit?
The research findings will benefit commissioners involved in redesigning paediatric continence services by increasing awareness of risk factors and patterns of childhood wetting/soiling associated with chronic incontinence. The latest guide on Commissioning a Paediatric Continence Service (NICE) states that one of the key components of an effective service is greater awareness of paediatric continence problems resulting in improved identification, earlier intervention and faster referral- to-treatment times. The research findings could help to identify children at risk of chronic incontinence and, therefore, increase the possibility of delivering services to those who are most likely to benefit from early intervention. This could ultimately help to prevent continence problems from becoming chronic, reducing referrals to secondary care and, ultimately, helping the NHS make better use of its resources.

The research will benefit individuals working in primary care and clinicians who treat children with incontinence by providing an evidence base about risk factors and outcomes associated with continence problems. The ERIC Clinical Advisory Committee have voiced concerns from clinicians that there is a limited evidence base that provides empirical information about factors that predict the prognosis of continence problems. There is also little empirical information about the range of secondary issues experienced by young people with continence problems.

The research has strong potential to help relieve the burden of incontinence and to improve quality of life for children, young people and their families. The research will help to increase awareness among parents about patterns of incontinence that may not resolve naturally and encourage parents to seek timely help for their child's incontinence. Older children and teenagers find it particularly hard to deal with incontinence due to the social stigma and the devastating impact on their self-worth and quality of life at a crucial stage of development. The findings will help young people to understand that they are not alone with their problem and there is help available. The proposed project aims to address the pressing need for sensitive, age appropriate information about continence issues in young people to help to reduce their emotional distress and encourage teens to seek help to manage their incontinence.

The research will increase awareness and understanding among teachers and school nurses of the complex needs of children with continence problems and of the impact of incontinence on school life.

Staff employed on the project will develop research skills that will be invaluable in terms of their career development. The statistician will have expert guidance from Dr Heron and Professor Tilling and support from a wide network of individuals currently involved in analysis of longitudinal data. The research psychologist will gain invaluable professional skills in conducting the qualitative study under the expert guidance of Dr Horwood.