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

Lead Research Organisation: University of Bristol
Department Name: Social Medicine

Abstract

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.

Technical Summary

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.

Planned Impact

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.

Publications

10 25 50
 
Description Breaking through the Barriers: Helping Children with Continence Problems
Geographic Reach National 
Policy Influence Type Citation in other policy documents
URL https://vivbennett.blog.gov.uk/2016/11/03/breaking-through-the-barriers-helping-children-with-contin...
 
Guideline Title Excellence in continence care: Practical guidance for commissioners, providers, health and social care staff and information for the public
Description Contribution to Excellence in Continence Care Guidance (for commissioners and clinicians)
Geographic Reach National 
Policy Influence Type Citation in clinical guidelines
 
Description Contribution to letter to Kath Evans, Head of Patient Experience at NHS England
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact Our findings relating to the adverse impacts of continence problems in young people were included in a letter sent by the Paediatric Continence Forum (PCF) to Kath Evans, Head of Patient Experience at NHS England. The aim of the letter was to to promote the PCF's local lobbying toolkit which is designed to help the parents and carers of children and young people with continence problems to lobby for improvements to NHS paediatric continence services at a local or national level. The value of these research findings is that we can provide direct quotes from young people when talking to MPs and commissioners. At one level they need facts and figures, but personal experiences will hopefully make them realise better what it is like for the 'patient' The letter caught the attention of Kath Evans and, as a result she set up a teleconference with the Paediatric Continence Forum, ERIC and PromoCon last autumn. This was an information- sharing process - to increase her awareness, as Head of Patient Experience NHS England, of the issues children and young people with continence problems were facing. As a result she initiated a follow-up teleconference with the Lead Nurse for CYP at Public Health England, Wendy Nicholson - so that the PCF could play an active part in ensuring that new commissioning guidelines for children with complex health needs also included continence.
 
Description Exploring secondary impacts of incontinence on young people
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Online resources for teenagers on the website of The Children's Bowel & Bladder Charity- ERIC
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact The need to significantly improve the existing information resources for teenagers with continence problems was recognised by the continence charity ERIC, Paediatric Continence Forum, clinicians and young people themselves. The existing literature that was available for young people was insufficient and not age appropriate. We designed new web pages for teenagers with continence problems on the website of The Children's Bowel & Bladder Charity- ERIC (http://www.eric.org.uk/Pages/Category/teens). These web pages provide educational resources and evidence based, age appropriate information and advice about living with continence problems. Participants we interviewed for this project were involved in co-producing the information for the web pages and provided feedback on the content. The information resources on the ERIC website are designed to support young people with continence problems (daytime wetting, bedwetting, soiling). The webpages provide information about how many young people are affected by continence problems, where to go for help, what to expect when they see a clinician, and how to deal with continence problems at school and on trips away from home. These webpages are also useful for clinicians treating young people with continence problems and for parents. This research has improved the evidence base to inform clinicians and parents about the range of secondary impacts experienced by young people with continence problems so that appropriate support can be offered e.g. some young people need psychological support. The webpages have helped to change young people's understanding about continence problems. In particular, many young people with continence problems feel they are alone with the problem and they were surprised to learn that these problems are not uncommon. "I found it really heartening to see the statistics of how many other young people have had the same problem as me and also read accounts from others". Due to the stigma of incontinence, young people find it difficult to talk about their problems and they develop strategies to manage their symptoms. The webpages provided advice about whether and how to tell friends and teachers about their continence problems and how to deal with their continence problems at school and on nights away. [The webpages] "covered all the main issues that I faced and would like other teenagers in my situation to be aware of and there were some great tips on how to deal with tough situations and decisions".
URL http://www.eric.org.uk/Pages/Category/teens
 
Description Policy briefing entitled "Young people with continence problems need better support at secondary school"
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL http://www.bristol.ac.uk/policybristol/policy-briefings/young-people-continence-schools/
 
Description Scientific advisor for the 2015 Paediatric Continence Commissioning Guide
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
URL http://www.paediatriccontinenceforum.org/wp-content/uploads/2015/09/Paediatric-Continence-Commission...
 
Description ESRC Impact Acceleration
Amount £19,860 (GBP)
Organisation University of Bristol 
Sector Academic/University
Country United Kingdom
Start 01/2018 
End 08/2018
 
Description Medical Research Council (Confidence in Concept)
Amount £76,862 (GBP)
Organisation University of Bristol 
Sector Academic/University
Country United Kingdom
Start 01/2019 
End 10/2019
 
Description Wellcome Trust Institutional Strategic Support Fund and Enterprise & Impact Development Fund
Amount £42,011 (GBP)
Organisation University of Bristol 
Sector Academic/University
Country United Kingdom
Start 01/2017 
End 12/2017
 
Description Paediatric Continence Forum 
Organisation Education and Resources for Improving Childhood Continence
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution In 2014, I was a scientific advisor for the Paediatric Continence Commissioning Guide (http://www.paediatriccontinenceforum.org/wp-content/uploads/2013/09/PCF-Commissioning-Guidance-for-NICE-11-August-2014-Final.pdf). I was then appointed as a member of the Paediatric Continence Forum in 2015 (PCF: http://www.paediatriccontinenceforum.org/) and as a member of the Commissioning Guideline Development Group. I have used findings from my MRC research project to work with the PCF to update the ChiMat guidelines to be cross-referenced with NHS England's document " Excellence in Continence Care: practical guidance for commissioners, providers, health and social care staff and information for the public".
Collaborator Contribution The invitation to join the Paediatric Continence Forum was from the Chair of the PCF, Dr Penny Dobson. She is the founder of the children's continence charity (ERIC: http://www.eric.org.uk/) and I have collaborated with this charity since 2014 to translate findings from my continence research into resources for children, parents and clinicians. I am continuing to work with ERIC to translate the findings from the research on the current project into resources on their website for young people, clinicians and parents. The co-investigators on my current grant have provided expertise in quantitative analysis (Dr Jon Heron), qualitative analysis (Dr Helen Cramer) and paediatrics (Professor Alan Emond). The collaboration with the PCF has been supported by my work with these individuals.
Impact http://www.paediatriccontinenceforum.org/wp-content/uploads/2013/09/PCF-Commissioning-Guidance-for-NICE-11-August-2014-Final.pdf
Start Year 2014
 
Description Paediatric Continence Forum 
Organisation Paediatric Continence Forum
Country United Kingdom 
Sector Private 
PI Contribution In 2014, I was a scientific advisor for the Paediatric Continence Commissioning Guide (http://www.paediatriccontinenceforum.org/wp-content/uploads/2013/09/PCF-Commissioning-Guidance-for-NICE-11-August-2014-Final.pdf). I was then appointed as a member of the Paediatric Continence Forum in 2015 (PCF: http://www.paediatriccontinenceforum.org/) and as a member of the Commissioning Guideline Development Group. I have used findings from my MRC research project to work with the PCF to update the ChiMat guidelines to be cross-referenced with NHS England's document " Excellence in Continence Care: practical guidance for commissioners, providers, health and social care staff and information for the public".
Collaborator Contribution The invitation to join the Paediatric Continence Forum was from the Chair of the PCF, Dr Penny Dobson. She is the founder of the children's continence charity (ERIC: http://www.eric.org.uk/) and I have collaborated with this charity since 2014 to translate findings from my continence research into resources for children, parents and clinicians. I am continuing to work with ERIC to translate the findings from the research on the current project into resources on their website for young people, clinicians and parents. The co-investigators on my current grant have provided expertise in quantitative analysis (Dr Jon Heron), qualitative analysis (Dr Helen Cramer) and paediatrics (Professor Alan Emond). The collaboration with the PCF has been supported by my work with these individuals.
Impact http://www.paediatriccontinenceforum.org/wp-content/uploads/2013/09/PCF-Commissioning-Guidance-for-NICE-11-August-2014-Final.pdf
Start Year 2014
 
Description Challenges in talking to young people about sensitive personal issues: Experiences from the ROCCA continence study 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Dr Katie Whale gave a seminar to the Centre of Academic Mental Health to discuss challenges in talking to young people about sensitive personal issues. She talked specifically about the experiences of interviewing young people with continence problems and shared expertise in techniques designed to facilitate interviews.
Year(s) Of Engagement Activity 2015
URL http://www.bristol.ac.uk/psychiatry/
 
Description Developing methods for researching stigmatised health problems in young people 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Dr Katie Whale has been sharing the methods we employed for engaging young people with continence problems in the research project. She gave a presentation to the University's Qualitative Research Forum describing ways of overcoming methodological challenges relating to researching stigmatised health problems in young people. This included arts based approaches and effective use of Skype for in depth interviews. The impact of this activity relates to providing guidance on research methods used by qualitative researchers. Following her presentation, Dr Whale was invited to write an article for the British Psychological Society Qualitative Methodology Bulletin on using Skype and telephone interviews in sensitive qualitative research based on the experiences of this project. This article will be published in 2017.
Year(s) Of Engagement Activity 2016
 
Description Half day conference to disseminate and discuss the findings of the project 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact We held a half-day conference at the University of Bristol to disseminate the findings of the project and to gain feedback on the key messages of the project and how best to translate the findings into improving services for children and young people with continence problems.
Around 60 participants attended the half-day event including paediatric continence nurses, school nurses, paediatricians, nephrologists, charity chief executives, parents, urologists, geneticists, epidemiologists, GPs and members of the Paediatric Continence Forum (a campaigning group of health professionals, patient representatives and commercial members that engages with the Government and policymakers nationally to raise awareness of childhood bladder and bowel problems and to improve NHS services in this area of child health). We have established new contacts with individuals involved in paediatric continence care and we will use these connections to further disseminate the findings of the project. General feedback from the attendees has indicated improved understanding of the range of risk factors for continence problems (e.g. early risk factors that could identify children who are likely to develop persistent incontinence), the impacts experienced by young people with continence problems (e.g. increased awareness of the adverse impacts at school) and how to improve clinical experiences of young people with continence problems.
Year(s) Of Engagement Activity 2017
URL http://www.bristol.ac.uk/ccah/seminars/2016/rocca-seminar.html
 
Description I contributed to a report that was launched at Parliament to call upon the Government to improve paediatric continence care 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Worked in partnership with the Paediatric Continence Forum, ERIC (The Children's Bowel & Bladder Charity), Bladder & Bowel UK and Coloplast to produce a report entitled "It Happens to Me Too: Breaking Down the Barriers Faced by Children and Young People with Bladder and Bowel Issues". The purpose of the report is to call upon on the Government and NHS England to improve paediatric continence care services across the UK. The report was launched in Parliament at an event hosted by Co-Chair of the All-Party Parliamentary Group for Continence Care, Rosie Cooper MP.
Year(s) Of Engagement Activity 2018
URL https://www.coloplast.co.uk/Global/UK/about_us/news/It-Happens-To-Me-Too.pdf
 
Description Oral presentation at The Association for Young People's Health: 10th Anniversary Conference, Institute of Child Health, London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I gave an oral presentation entitled "'Not life threatening but life ruining': continence problems in young people" at the Association for Young People's Health - 10th Anniversary Conference. This was a multi-disciplinary conference for everyone in the young people's health field including health professionals, local government, teachers, youth workers, researchers, commissioners, policy leads & the voluntary sector. My presentation has resulted in requests for further information and collaboration.
Year(s) Of Engagement Activity 2018
URL http://www.youngpeopleshealth.org.uk/wp-content/uploads/2018/03/
 
Description Presentation at training day for teachers 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Schools
Results and Impact Dr Katie Whale gave a presentation at a training day for teachers organised by the Children's Bowel and Bladder Charity- ERIC. The training day was aimed at primary and secondary school teachers to increase understanding of continence problems and how to managed them in schools. This presentation used the findings from the qualitative strand of the project relating to school experiences of young people with continence problems.
Year(s) Of Engagement Activity 2016
 
Description Qualitative analysis of young people's experience of incontinence 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Dr Katie Whale gave a presentation on impacts of incontinence in young people to the Advisory Committee of ERIC (The Children's Continence Charity). The committee comprises paediatricians, a clinical psychologist, school nurses, parent representatives, a nursery nurse, community nurses, and staff from the charity (including the helpline staff). The purpose of the talk was to disseminate and discuss findings regarding the impacts of continence problems in young people across multiple domains of everyday life (e.g. school, home, relationships, leisure). The group provided valuable guidance for the qualitative analysis.
Year(s) Of Engagement Activity 2015
URL http://www.eric.org.uk/About/HowyoucanhelpERIC#CAC
 
Description Ran a workshop at the School and Public Health Nurses Association (SAPHNA) Annual Conference, 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I was invited to run a workshop at the School and Public Health Nurses Association (SAPHNA) Annual Conference, 2018 to public health and school nurses and policy makers. The aim of the workshop was to increase understanding of the support needs of young people with continence problems at secondary school. The workshop resulted in discussion of the need to improve teachers' understanding of the unique needs of young people with continence problems and better ways of providing support to young people in the secondary school environment.
Year(s) Of Engagement Activity 2018
URL http://www.saphna.co/events/saphna-conference-2018
 
Description Seminar at the Bladder and Bowel UK Paediatric Education Day 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I gave a seminar entitled: "The role of psychological factors in paediatric continence problems" at the Bladder and Bowel UK Paediatric Education Day to 65 attendees including nurses (school, paediatric continence, community, bedwetting and constipation specialist), professionals from children's services, nursery nurses, and healthcare assistants. The consensus from delegates was that this a particularly interesting session.
Year(s) Of Engagement Activity 2018
URL https://www.bbuk.org.uk/blog/bbuks-paediatric-education-day-2018/
 
Description Staff workshops to share expertise in different research methods 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other audiences
Results and Impact Dr Katie Whale (Research Associate on this MRC project) obtained funding from the University of Bristol Research Staff Development Fund for a series of six staff workshops designed to provide opportunities for early career researchers in the Centre for Child and Adolescent Health to share experiences and knowledge, strengthen working relationships and collaboration within the Centre, and improve morale and motivation when faced with challenging research issues. Findings from the MRC project have contributed to these workshops. Specifically, Dr Whale has shared the skills she has acquired working on this project in relation to conducting qualitative interviews on challenging topics with potentially vulnerable participants, using Skype to conduct in-depth interviews and recruiting hard to reach populations.
Year(s) Of Engagement Activity 2015,2016
URL http://www.bristol.ac.uk/ccah/
 
Description Workshops at the ERIC (Children's Bowel and Bladder Charity) conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I ran two workshops at the ERIC (Children's Bowel and Bladder Charity) conference with 50 attendees at each including nurses (paediatric continence, school, community, urology, advanced practitioner), school health assistants, paediatricians, paediatric urologists, clinical psychologists, gastroenterologists, health and well being coordinators, and health care assistants. The workshop received very positive evaluations.
Year(s) Of Engagement Activity 2018
URL https://www.eric.org.uk/programme