Table 3.
Top 19 weighted ranked questions from the interim prioritisation survey according to respondent categories
| Question | Combined rank* | Healthcare professional position |
Parent/carer position | Adult born extremely preterm position |
| What is the best way to manage pain and distress in babies? | 1 | 1 (=) | 2 (+1) | Joint 2 (+1) |
| What can be done in the neonatal intensive care unit to improve long-term health and developmental outcomes? | 2 | 2 (=) | 3 (+1) | 1 (−1) |
| How can we improve the care of babies at delivery and in the hours after birth to improve outcomes? | 3 | 4 (+1) | Joint 5 (+2) | Joint 2 (+1) |
| Should intensive care be offered to babies born at 22 and 23 weeks’ gestation? | Joint 4 | 6 (+2) | 7 (+3) | 5 (+1) |
| What is the best way to prevent brain injury, including intraventricular haemorrhages (bleeding in the brain)? | Joint 4 | 3 (−1) | 6 (+2) | Joint 9 (+5) |
| Does reducing sensory stimulation (lights, noise, touch) in the neonatal intensive care unit improve outcomes, and how can this best be achieved? | 5 | 7 (+2) | 10 (+5) | Joint 3 (−2) |
| What are the long-term outcomes and how are they best predicted? | 6 | Joint 10 (+4) | Joint 9 (+3) | Joint 3 (−3) |
| What interventions or treatments during pregnancy and labour can improve outcomes? | 7 | 20 (+13) | 1 (−7) | 4 (−3) |
| What is the best way for families to be more involved in the care of their baby during their hospital admission? | 8 | 14 (+6) | Joint 11 (+3) | 6 (−2) |
| Should formal neurological assessments be routinely performed? | 9 | Joint 15 (+6) | Joint 9 (=) | Joint 8 (−1) |
| How can antenatal counselling be improved for families facing the possible delivery of a baby before 25 weeks’ gestation? | Joint 10 | Joint 15 (+5) | 8 (−2) | Joint 10 (=) |
| How can infant mental health be improved? | Joint 10 | Joint 11 (+1) | 15 (+5) | 7 (−3) |
| How can mothers be best supported in breastfeeding and expressing milk? | 11 | Joint 18 (+7) | 4 (−7) | Joint 12 (+1) |
| What is the best way to position babies in the first few days after they are born to improve outcomes? | 12 | 5 (−7) | Joint 18 (+6) | Joint 12 (=) |
| Does family-centred care (working together with families to provide care and make decisions for their baby) improve outcomes? | Joint 13 | Joint 15 (+3) | Joint 14 (+1) | Joint 7 (−6) |
| What are the best ways to communicate and support difficult discussions (including end of life decisions) in the neonatal intensive care unit? | Joint 13 | Joint 16 (+3) | Joint 13 (=) | Joint 7 (−6) |
| What impact does having a baby born less than 25 weeks’ gestation have on parental/family mental and physical health? | Joint 14 | Joint 25 (+9) | Joint 5 (−10) | Joint 8 (−7) |
| How can families be best supported during their baby’s neonatal intensive care admission? | Joint 14 | Joint 16 (+2) | Joint 11 (−3) | Joint 11 (−3) |
| What is the most effective postnatal steroid treatment regimen to improve outcomes? | 15 | 8 (−7) | Joint 18 (+3) | Joint 13 (−3) |
Position remained in the same rank (=). Position increased in rank (+). Position decreased in rank (−).
Rank 1–10 ■. Rank 11–15 ■. Rank 16–20 ■.
*Combined ranked questions weighted equally between the respondent groups.