Table 4

Outcomes scored at the consensus meeting

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.