Children's Hospital of Philadelphia; Philadelphia, PA; Department of Medical Ethics and Health Policy, Perelman School of Medicine at the University of Pennsylvania; Philadelphia, PA.
Nationwide Children's Hospital, Columbus, OH.
J Pediatr. 2023 Aug;259:113455. doi: 10.1016/j.jpeds.2023.113455. Epub 2023 May 10.
To assess which potential future outcomes are most important to parents of children with bronchopulmonary dysplasia, a disease that affects future respiratory, medical, and developmental outcomes for children born preterm.
We recruited parents from 2 children's hospitals' neonatal follow-up clinics and elicited their importance rating for 20 different potential future outcomes associated with bronchopulmonary dysplasia. These outcomes were identified and selected through a literature review and discussions with panels of parents and clinician stakeholders, via a discrete choice experiment.
One hundred and 5 parents participated. Overall, parents ranked "Will my child be more vulnerable to other problems because of having lung disease?" as the most important outcome, with other respiratory health related outcomes also highly ranked. Outcomes related to child development and effects on the family were among the lowest ranked. Individually, parents rated outcomes differently, resulting in a broad distribution of importance scores for many of the outcomes.
The overall rankings suggest that parents prioritize future outcomes related to physical health and safety. Notably, for guiding research, some top-rated outcomes are not traditionally measured in outcome studies. For guiding individual counseling, the broad distribution of importance scores for many outcomes highlights the extent to which parents differ in their prioritization of outcomes.
评估哪些潜在的未来结果对患有支气管肺发育不良（一种影响早产儿未来呼吸、医疗和发育结果的疾病）的儿童的父母最为重要。
我们从 2 家儿童医院的新生儿随访诊所招募了父母，并对与支气管肺发育不良相关的 20 种不同潜在未来结果进行了重要性评分。这些结果是通过文献回顾以及与家长和临床利益相关者小组的讨论确定和选择的，采用了离散选择实验。
105 名父母参与了研究。总体而言，父母将“由于患有肺部疾病，我的孩子会更容易受到其他问题的影响吗？”评为最重要的结果，其他与呼吸健康相关的结果也得到了高度评价。与儿童发展和对家庭影响相关的结果排名较低。具体而言，父母对结果的评价不同，导致许多结果的重要性评分分布广泛。
总体排名表明，父母优先考虑与身体健康和安全相关的未来结果。值得注意的是，对于指导研究，一些排名较高的结果在传统的结果研究中并未得到测量。对于指导个别咨询，许多结果的重要性评分分布广泛，突出了父母在结果优先排序方面的差异程度。
