Recommendations for research

The guideline development group has made the following recommendations for research, based on its review of evidence, to improve NICE guidance and care of people with faecal incontinence in the future.

Pelvic floor muscle training

What is the value of pelvic floor muscle training in preventing and treating obstetric-related faecal incontinence?

Why this is important

Obstetric-related faecal incontinence is a distressing condition which may occur early after childbirth. Previous obstetric injury is also a major cause of faecal incontinence in older women, so reducing risk would have important benefits for both young and old people. Obstetric risk factors relate not just to sphincter disruption, but also to pelvic floor damage, and there is reason to believe that improving pelvic and sphincter strength before potential injury may be beneficial. Equally, early intervention post partum may help reduce the well recognised risk of delayed-onset faecal incontinence in women.

There is no standardisation of what pelvic floor muscle training should comprise. There is also no evidence base on whether treatment before potential injury (that is, labour) serves a protective role. This study will require the interaction of obstetric, colorectal and physiotherapy services across primary and secondary care.

Patient-rated outcomes

The development of a valid and reliable tool to measure patient-rated outcomes including symptom severity and quality of life for people with faecal incontinence.

Why this is important

Research into and treatment of faecal incontinence is hampered by the lack of a valid and reliable tool that has been refined through iterative piloting and consultation stages. Such a tool would enable standardisation of outcome measures with which to compare results of interventions, allowing the effectiveness of interventions to be genuinely compared and accurately assessed.

Qualitative review for this guideline has highlighted the paucity of information on patients' views and the crudeness of current evaluation of symptoms and outcomes. By involving users, healthcare providers and qualitative researchers in the design of a tool, the most relevant outcomes (to all groups) could be measured, including symptom severity and quality of life. Each group would bring different perspectives to the tool, ensuring that all relevant topics are covered and that the tool is useful to all groups.

Self-care educational programmes

Would a self-care educational programme for patients and carers improve outcomes (symptom severity and quality of life) for people with faecal incontinence?

Why this is important

Qualitative evidence suggests that mutual support groups improve quality of life for people with faecal incontinence. Evidence also suggests that people with faecal incontinence should benefit from improved access to healthcare options, that information about management and treatment options is scarce, and that the taboo surrounding faecal incontinence hinders help-seeking behaviour. Addressing these issues would allow patients to be involved in tailoring of individual care plans.

A self-care group programme providing integrated education and support covering topics such as support networks, coping strategies, and identification and provision of suitable products and treatments may aid practical care and improve both physical and psychological outcomes. It would provide community-based healthcare, involving healthcare professionals including continence specialist clinicians and clinical psychologists, and would integrate with social care.

This type of self-care programme may reduce the demand on secondary care. The views of those attending may shape future health/social care by reducing the number of admissions to residential care because of faecal incontinence.

Bowel management programme

Does a bowel management programme for older people in care homes improve the outcomes of faecal incontinence and constipation? Does the programme improve perceptions of quality of care for the individual with faecal incontinence and the carer?

Why this is important

Over 50% of older people in care homes suffer from bowel-related problems. This is the cause of much anxiety and discomfort for patients, and adds to the carer burden. Moreover, with the UK's ageing population, this problem will increase with time. Little research has been done on effective bowel care in this population, and care is expensive, with laxatives, pads and carer time all contributing to the overall cost.

A management programme for this population may provide a way of enhancing the quality of life of people with faecal incontinence and their carers, and improve overall healthcare.

Specialist assessment

What is the prognostic value of physiological assessment in defining the outcome of surgery to treat faecal incontinence?

Why this is important

It is currently hard to predict which people will benefit from surgical treatment for faecal incontinence. Developing an improved selection procedure would reduce unnecessary procedures, reducing costs and improving care pathways for people with faecal incontinence.

Clinical assessment could be compared with full physiological and structural assessment in people referred for specialist assessment in whom surgery is contemplated. This would allow a more accurate correlative description of the relationship between symptoms and physiology or structure. This in turn would allow a better selection procedure to be developed. Following people through surgery and over a long-term follow-up period would allow the prognostic value of certain physiological/structural abnormalities in defining surgical outcome to be evaluated. Long-term outcome of certain surgical procedures could also be investigated.

This research question would be best answered by a multicentre study based on a network of NHS secondary care sites.

  • National Institute for Health and Care Excellence (NICE)