Mortality outcomes | Resource utilisation outcomes | Life impact outcomes | Pathophysiological manifestation outcomes | Adverse event outcomes | ||
Death with cause specified* | Whether home parenteral nutrition is required | Long-term faecal incontinence* | Impotence | Aganglionic bowel remaining at the proximal resection margin | Intraoperative complication—life threatening (Clavien-Dindo grade four) | Postoperative bowel obstruction |
Unplanned reoperation with indication specified* | Long-term voluntary bowel movements without need for enemas, or rectal or colonic irrigation* | Difficulty in conceiving a child | Hirschsprung's associated enterocolitis* | Postoperative complication—life threatening (Clavien-Dindo grade four) | Narrowing of anastomosis | |
Unplanned readmission | Long-term urinary incontinence* | Attendance at school, or time spent missing lessons | Normal growth | Intraoperative visceral injury—life threatening (Clavien-Dindo grade four) | Fistula | |
Associated healthcare costs | Long-term offensive odour secondary to lack of control of faeces or flatus, or inability to maintain hygiene | Long-term psychological stress-family* | Objective score of bowel function* | Anastomotic leak | Any intraoperative visceral injury | |
Societal costs* | Requiring nappy or pad | Long-term bladder dysfunction | Colonic torsion | Cuff infection | ||
Sensation of need to defecate* | Painful defecation | Ischaemic bowel | Wound dehiscence | |||
Perianal excoriation with significant impact on daily life* | Difficulty with sexual relations or sexual intercourse because of the psychological or physical impact of HD or its treatment* | Faecal impaction | ||||
Peristomal excoriation with significant impact on daily life | Long-term difficulty in feeding | |||||
Need for a permanent stoma, with indication specified* | Social development | |||||
Need for a new stoma at any point after the pull-through procedure | Objective score of quality of life, using appropriate age specific measures* | |||||
Long-term psychological stress for the individual with Hirschsprung's disease* | Urgency of stool |
*Outcomes meeting consensus for inclusion in the COS.
COS, core outcome set.