Improving quality of life in children with faecal incontinence and chronic constipation

The Royal London Hospital

  • Led by The Royal London Hospital and implemented in its children’s department.
  • Aimed to improve quality of life and outcomes for infants, children and adolescents with faecal incontinence and chronic constipation.
  • Offered patients a comprehensive assessment, including many of the psychological, physical and physiological components of the condition, to target treatment and optimise quality of life for these patients.
  • Project ran from March 2016 to August 2017.

Chronic constipation (CC) with or without faecal incontinence (FI) affects 800,000 to 4,800,000 children in the UK annually.  These symptoms are difficult to manage, involving physical and psychosocial impact.  It is generally managed according to trial and error. While most patients respond to conservative treatments it can be a disabling condition, impacting more widely on the child and their family.

Although the existing service was safe and clinically effective, a number of deficiencies were identified:

  • paucity of information and lack of scientific evidence to explain symptoms
  • limited diagnostic evidence to guide and improve management
  •  lack of a structured multi-disciplinary team (MDT).

The aim of this project was to establish a service to improve management, using multi-disciplinary specialists and novel techniques.  

The Children’s Anorectal Physiology Service (CAPS) is a unique service and provides novel investigations (Awake High Resolution Anorectal Manometry or AHRAM), simultaneously with bowel and psychosocial assessment to guide management with an established MDT.

Project challenges included administrative problems (eg obtaining NHS funding), equipment trouble-shooting, recruitment of a health care assistant, and fine-tuning methodologies.  High team rapport, patience, and using feedback to optimise project delivery helped resolve these.

The project treated 107 patients over nine months, resulting in improved patient satisfaction, with patients describing the service as miraculous. Patients and their families are keen that others can benefit from the service, and the business case to continue and expand the service at the Hospital received unanimous clinical support.

Contacts

For further information about the project, please email Stewart Cleeve, Consultant Paediatric Surgeon, The Royal London Hospital or Eleni Athanasakos, Paediatric Clinical Scientist, The Royal London Hospital.

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