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 process | 29 (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 one | 12 (86) | 2 (14) | 6 (43) | 5 (36) | 1 (7) | 2 (14) | Not collected until phase two | 14 | 0 | |||
| 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 process | 4 (57) | 3 (43) | 1 (14) | 6 (86) | 7 (5–8) | 0 (0) | 0 (0) | 6 (100) | 4 (57) | 3 (43) | ||
| Only completed phase one | 1 (100) | 0 (0) | 0 (0) | 1 (100) | Not collected until phase two | 0 (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 process | 29 (94) | 2 (6) | 11 (35) | 20 (65) | 21 (68) | 10 (32) | 27 (87) | 4 (13) | 23 (74) | 8 (26) | ||
| Only completed phase one | 2 (66) | 1 (33) | 0 (0) | 3 (100) | 0 (0) | 3 (100) | 3 (100) | 0 (0) | 3 | 0 | ||
| 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 process | 12 (100) | 0 (0) | 9 (75) | 3 (25) | 7 (58) | 3 (42) | 7 (58) | 4 (33) | 1 (8) | 4 (33) | 8 (66) | |
| Only completed phase one | 1 (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.