Values and preferences of preterm infants' health outcomes from the perspective of parents, healthcare providers and children or adults born preterm: A systematic review.

BACKGROUND: Identifying values and preferences regarding health outcomes for preterm infants is a key aspect of informing clinical decision-making and guideline development. METHODS: We searched for quantitative and qualitative studies conducted among parents, healthcare professionals, and individuals born preterm, assessing the values regarding mortality, clinical outcomes, and long-term disabilities. Screening, data extraction, critical appraisal, and certainty of evidence assessments were performed in duplicate. RESULTS: We included 24 studies, 16 quantitative and 8 qualitative, including 4613 participants. Very low certainty evidence suggests that survival is the most valued outcome for parents and individuals born preterm. In contrast healthcare professionals assigned a lower value to survival when it was associated with the risk of disability and poor quality of life. Very severe disability, especially cognitive impairment, was considered less desirable than survival across all groups, but with variation within each group. Very low certainty evidence indicates that among healthcare professionals, intraventricular hemorrhage is the most severe and undesirable condition in the short-term, together with suffering and pain. Evidence is very uncertain regarding how values on the same outcomes differ among families, individuals, professionals, and clinical contexts. Some outcome preferences may change over time, both in relative importance and across different stages of a child's development. CONCLUSIONS: The findings can inform clinical decision-making, guideline development, and health professional education related to values and variability of outcomes. However, the uncertainty and variability between and within interest-holder groups should be considered. Future research should use validated measurements and enroll key interest-holders to improve the evidence.