Table 4

Outcomes scored at the consensus meeting

Mortality outcomesResource utilisation outcomesLife impact outcomesPathophysiological manifestation outcomesAdverse event outcomes
Death with cause specified*Whether home parenteral nutrition is requiredLong-term faecal incontinence*ImpotenceAganglionic bowel remaining at the proximal resection marginIntraoperative 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 childHirschsprung’s associated enterocolitis*Postoperative complication—life threatening (Clavien-Dindo grade four)Narrowing of anastomosis
Unplanned readmissionLong-term urinary incontinence*Attendance at school, or time spent missing lessonsNormal growthIntraoperative visceral injury—life threatening (Clavien-Dindo grade four)Fistula
Associated healthcare costsLong-term offensive odour secondary to lack of control of faeces or flatus, or inability to maintain hygieneLong-term psychological stress-family*Objective score of bowel function*Anastomotic leakAny intraoperative visceral injury
Societal costs*Requiring nappy or padLong-term bladder dysfunctionColonic torsionCuff infection
Sensation of need to defecate*Painful defecationIschaemic bowelWound 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 lifeLong-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 procedureObjective 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.