Table 2

The 23 most frequently cited topic uncertainties derived from the survey*

1. Mechanisms and causes (n=31)13.Evidence-based practice (n=11)
2.Psychological support (n=24)14.Faecal Incontinence in children (n=11)
3.Education (patients, carers, healthcare providers) (n=23)15.Pregnant/post-partum women (n=11)
4.Drugs (general) (n=21)16.Lifestyle (n=9)
5.(Self) Managing condition† (n=20)17.Physiotherapy‡ (n=9)
6.PFMT/biofeedback/sphincter exercises (n=20)18.Prevalence (n=9)
7.Bowel management (general) (n=19)19.Electrical stimulation (n=7)
8.Surgery (general) (n=19)20.General models of care (n=7)
9.Dietary management (n=15)21.SNS (n=7)
10.Psychological/behavioural/urgency suppression techniques (n=14)22.Improvements to physical environments (n=6)
11.Clinical pathway to diagnosis (n=13)23.New devices§ (intra-rectal diversion devices) (n=6)
12.Constipation (including in children) (n=12)
  • *Categories were based on survey responses, sometimes responses were not very detailed and broad categorisations had to be used. To reflect the detail in the responses, we chose the most precise category based on the description in the response, for example, if respondents specifically mentioned electrical stimulation this would be the category chosen whereas if ‘physiotherapy’ was mentioned with no further description then the ‘physiotherapy’ (not otherwise specified) category was used.

  • †Patients/carers wanted the tools to be able to self-manage the condition on a day-to-day basis.

  • ‡Not otherwise specified.

  • §Respondents wanted new devices to be invented to help divert faeces non-surgically to help with day-to-day management of the condition for example, an intra-rectal diversion device).

  • PFMT, Pelvic Floor Muscle Training; SNS, sacral nerve stimulation.