Timone University Hospital, Espace Ethique Méditerranéen; Aix-Marseille University, UMR 7268 Anthropologie bio-culturelle, Droit, Éthique & Santé (ADÉS), Marseille, France.
BMC Pediatr. 2013 Apr 19;13:58. doi: 10.1186/1471-2431-13-58.
The sequelae of extremely preterm birth have an impact on the quality of life (QoL) of these children. Standardized assessment of their QoL is rarely done in France. The aim of this study is to examine among all the types of physicians involved in the management of children born extremely preterm, their knowledge, use in routine practice and expectations concerning QoL assessment of these children using standardized questionnaires.
Prospective survey among heads of obstetric, neonatal medicine and paediatric neurology departments, by means of questionnaires. Two qualitative methods were used: focus groups and Delphi method.
Seventy-eight physicians participated (obstetricians 24%, neonatologists 58%, paediatric neurologists 18%). The physicians considered QoL a relevant concept which they assessed subjectively. They expressed a need for information on methods of assessment. An ideal QoL questionnaire was described. Expectations regarding availability of QoL data were expressed from a medical, family and societal perspective. The impact of QoL measurement on the ethical aspect of decision-making was approached, in particular the potential impact of this tool on the decision made. Expectations were found to differ between specialties.
This original study reports the perspective of experts on taking into consideration the QoL of children born extremely preterm. This is a subjective notion that is difficult to implement and which may influence therapeutic choices.
极早产儿的后遗症会影响这些孩子的生活质量（QoL）。在法国，很少对他们的 QoL 进行标准化评估。本研究的目的是检查参与管理极早产儿的所有类型的医生，了解他们在日常实践中对这些儿童 QoL 评估的知识、使用情况和期望，使用标准化问卷。
通过问卷对产科、新生儿医学和儿科神经病学部门的负责人进行前瞻性调查。使用了两种定性方法：焦点小组和 Delphi 方法。
78 名医生参与了调查（产科医生 24%，新生儿科医生 58%，儿科神经科医生 18%）。医生认为 QoL 是一个相关的概念，他们主观地评估 QoL。他们表示需要有关评估方法的信息。描述了一个理想的 QoL 问卷。从医学、家庭和社会角度表达了对 QoL 数据可用性的期望。还探讨了 QoL 测量对决策伦理方面的影响，特别是该工具对决策的潜在影响。期望在不同专业之间存在差异。
这项原始研究报告了专家对考虑极早产儿生活质量的观点。这是一个主观的概念，难以实施，可能会影响治疗选择。
