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 (%))
UKOther≤56–1011–15≥16Median on 1–9 scale (IQR)Ultra-short segmentShort segmentLong segmentMaleFemale
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 (%))
UKOther11–15 years old≥21 years oldMedian on 1–9 scale (IQR)Ultra-short segmentShort segmentLong segmentMaleFemale
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 (%))
UKOtherNoYes≤10>10Paediatric surgeonsNeonatologistsMaleFemale
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 (%))
UKOtherNoYes≤10>10Specialist nursesPaediatric gastroenterologistsHD ResearchersMaleFemale
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.