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Young people with urinary incontinence


Urinary incontinence is a common problem that affects up to 10% of children and young people under the age of 25 years and impacts on health, quality of life and health costs. Untreated, it can progress to adulthood and cause significant problems that impact on all aspects of life.


The overall aims are to improve the management and health outcomes for children and young people across NSW with primary urinary incontinence so that problems that can be effectively treated do not continue into adulthood.


The Agency for Clinical Innovation (ACI), in partnership with the Sydney Children’s Hospitals Network (SCHN) and the Continence Foundation of Australia (CFA), undertook a project to improve the management and health outcomes of young people with urinary incontinence in NSW. The project is known as PISCES (paediatric information, schema, continence, education, support).

Working groups were formed to:

  1. develop a framework and pathway to improve the management of urinary incontinence in children and young people in NSW
  2. better understand the experience of children and young people with urinary incontinence, their parents/carers, and healthcare workers
  3. provide guidance to develop a telehealth service to provide specialist support to rural health services
  4. provided education through forums or ‘pop up’ clinics. ‘Pop up’ refers to training clinics that can be held anywhere throughout NSW at the invitation of the local team.


Reduce the variation in management that currently occurs due to lack of knowledge and lack of standard approaches to treatment.

Reduce long waiting times and improve access to see specialists (currently up to 24 months) Involve young people and /or their families in the management of urinary continence.

PISCES project to date

  • A pathway for referral and treatment was circulated for comment.
  • Ethics approval was obtained to proceed with capturing the patient experience which involved a range of methods such as surveys, mapping the patient journey and interviews.
  • Surveys have been developed for young people, parents and clinicians. The data collected was analysed, and results were
  • Several site visits were held to develop ‘pop up’ clinics.

See the following reports:


Lynne Brodie - Manager, Transition Care Network
(02) 9464 4617 | 0414 015 115

Violeta Sutherland - Manager, Urology / Gynaecological Oncology Network
(02) 9464 4643 | 0407 171 390

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