The Hirschsprung’s disease core outcome set
Core outcome | Core area | Definition | Score 7–9 (%) | Minimum age of measurement |
Highest scoring outcomes in each OMERACT Filter 2.0 core area | ||||
Death with cause specified | Death | Death, with cause classified as due to
| 100% | No minimum |
Long-term faecal incontinence | Life impact | Involuntary passage of faecal matter in an inappropriate place by a child aged 5 years or over. Severity of faecal incontinence should be graded as:*
| 100% | Five years of age |
Objective score of bowel function | Pathophysiological manifestations | Objective score of bowel function, as measured by the Paediatric Incontinence and Constipation Score in children under 18 years of age, and the Gastrointestinal Quality of Life Index in adults over 18 years of age. | 94% | No minimum |
Unplanned reoperation, with indication specified | Resource use/economical impact and adverse event category | Unplanned reoperation with indication classified according to NICE criteria as minor, intermediate or major/complex. Unplanned is defined as any procedure not considered part of routine post-intervention practice. This outcome should include any procedure that is performed as a direct result of the diagnosis or treatment of the participants HD, and any episodes of general anaesthesia that are required as a direct result of the diagnosis or treatment of the participant’s HD, regardless of whether an operative intervention is undertaken (eg, an examination under anaesthesia, or manual evacuation). | 89% | No minimum |