Prioritising long‐term outcomes for preterm babies: A survey of consumers and clinicians

AIM: To determine if consumers and clinicians believe intelligence or health outcomes are more important long‐term outcomes for babies born preterm. METHODS: Prospective, online survey of six outcomes ranked using a hierarchy ladder, Likert scale and a hypothetical scenario: education (complete secondary school); longevity (70 years of age or more); money (sufficient for rent and food); normal weight; good health and intelligence. Participants were clinicians taking care of preterm babies, parents of preterm babies, ex‐preterm adults and adult controls. RESULTS: The survey was completed by 145 participants (35 controls, 36 clinicians, 39 parents and 35 ex‐preterm adults). Health was the most frequently top‐ranked variable on the hierarchy ladder (health; 99/145 (68.3%), money; 17/145 (11.7%), longevity; 10/145 (6.9%), education; 8/145 (5.5%), normal weight; 6/145 (4.1%), intelligence; 5/145 (3.4%), P < 0.0001), with no statistical difference between the groups. On a 5‐point Likert scale, participants were most likely to agree that sufficient money, health and finishing secondary school were important for preterm babies to have a good life (mean (SD): money 4.43 (0.81); health 4.39 (0.72); education 4.37 (0.81); normal weight 4.10 (0.81); intelligence 4.03 (0.94); longevity 4.01 (1.07), P < 0.0001). In the scenario, the option of an ex‐preterm adult having a healthy life with low socio‐economic status (SES), was preferred over high SES with an unhealthy life (p < 0.0001). CONCLUSIONS: Health was perceived as the most important long‐term outcome for preterm babies. Future research should prioritise good health outcomes for babies born preterm.