Table 3

Characteristics of participants who completed the Delphi process and those who dropped out of the study

Parents of children with HD
Location* (n (%)) Age of child (years) (n (%)) Parent-reported severity of child’s HD‡ (n (%)) Gender of participant (n (%))
UK Other ≤5 6–10 11–15 ≥16 Median on 1–9 scale (IQR) Ultra-short segment Short segment Long segment Male Female
Completed Delphi process29 (76)9 (24)19 (49)13 (33)1 (3)6 (15)7 (6–8)1 (3)22 (59)14 (38)1 (3)38 (97)
Only completed phase one12 (86)2 (14)6 (43)5 (36)1 (7)2 (14)Not collected until phase two140
People with HD
Location (n (%)) Age (n (%)) Self-reported severity HD§ (n (%)) Gender (n (%))
UK Other 11–15 years old ≥21 years old Median on 1–9 scale (IQR) Ultra-short segment Short segment Long segment Male Female
Completed Delphi process4 (57)3 (43)1 (14)6 (86)7 (5–8)0 (0)0 (0)6 (100)4 (57)3 (43)
Only completed phase one1 (100)0 (0)0 (0)1 (100)Not collected until phase two0 (0)1 (100)
Neonatal panel
Location (n (%)) Prior involvement in HD research (n (%)) Number of HD patients treated per year (n (%)) Stakeholder group (n (%)) Gender (n (%))
UK Other No Yes ≤10 >10 Paediatric surgeons Neonatologists Male Female
Completed Delphi process29 (94)2 (6)11 (35)20 (65)21 (68)10 (32)27 (87)4 (13)23 (74)8 (26)
Only completed phase one2 (66)1 (33)0 (0)3 (100)0 (0)3 (100)3 (100)0 (0)30
Non-neonatal panel
Location (n (%)) Prior involvement in HD research (n (%)) Number of HD patients treated per year (n (%)) Stakeholder group (n (%)) Gender (n (%))
UK Other No Yes ≤10 >10 Specialist nurses Paediatric gastroenterologists HD Researchers Male Female
Completed Delphi process12 (100)0 (0)9 (75)3 (25)7 (58)3 (42)7 (58)4 (33)1 (8)4 (33)8 (66)
Only completed phase one1 (100)0 (0)1 (100)0 (0)1 (100)0 (0)0 (0)1 (100)0 (0)1 (100)0 (0)
  • *One person preferred not to say.

  • One preferred not to say, one not applicable.

  • One person preferred not to score, and two did not know the length of affected bowel.

  • § One person did not know the length of affected bowel.

  • HD, Hirschsprung’s disease.