Department of Neonatology, APHM, North University Hospital, Marseille, France.
Health Qual Life Outcomes. 2012 Sep 28;10:122. doi: 10.1186/1477-7525-10-122.
While data for preterm children health-related quality of life are available, there are little data on the perception of health-related quality of life evaluation by physicians who manage preterm children, or its use in real life and decision making. The aim of this qualitative study is to highlight among physicians, themes of reflection about health-related quality of life in extremely preterm children (less than 28 weeks' gestation).
Focus groups at a French University Hospital with physicians who manage extremely preterm children: obstetricians, intensive care physicians, neonatal physicians and paediatric neurologists. The focus groups allowed the participants to discuss (drawing on their personal experience), three principal topics regarding the health-related quality of life of preterm children: representation, expectations in daily practice and evaluation method.
We included fourteen participants in the three focus groups. Many themes emerged from the focus groups: approaches for defining health-related quality of life and difficulties of utilization, the role that health-related quality of life should have in the system of care, the problem of standards and evidence-based decision making. Physicians had difficulties with taking positions regarding this concept. There were no differences by gender, age or seniority, but points of view varied by specialty and type of practice. Physicians who had longer specialized care for extremely preterm children were more sensitive to the impact of preterm complications on health-related quality of life.
This study provides preliminary results about physicians' perspective on the health-related quality of life of extremely preterm children. The themes emerged from the focus groups are classically described in other domains but not all in so clear a way (definition, interests and limits, ethical reflection). This approach was never developed in the field of prematurity with well-knowed consequences on quality of life. These results require to be confirmed on a larger representative sample. The themes and questions of this broad opinion survey will rest on the information issued from our preliminary interviews.
虽然有早产儿健康相关生活质量的数据，但很少有数据涉及管理早产儿的医生对健康相关生活质量评估的看法，或其在实际生活和决策中的应用。本定性研究的目的是强调在医生中，对极早产儿（<28 周妊娠）健康相关生活质量的反思主题。
在法国一所大学医院进行的焦点小组讨论，参与者为管理极早产儿的医生：产科医生、重症监护医生、新生儿科医生和儿科神经科医生。焦点小组允许参与者讨论（基于他们的个人经验）关于早产儿健康相关生活质量的三个主要主题：代表性、日常实践中的期望和评估方法。
我们纳入了三个焦点小组中的 14 名参与者。焦点小组中出现了许多主题：定义健康相关生活质量和使用困难的方法、健康相关生活质量在护理系统中应扮演的角色、标准和基于证据的决策的问题。医生在对这一概念采取立场方面存在困难。性别、年龄或资历没有差异，但观点因专业和实践类型而异。对极早产儿有更长时间专业护理的医生对早产儿并发症对健康相关生活质量的影响更加敏感。
本研究提供了医生对极早产儿健康相关生活质量观点的初步结果。焦点小组中出现的主题在其他领域经典地描述过，但没有一个如此清晰（定义、利益和限制、伦理反思）。这种方法在早产儿领域从未得到过发展，这对生活质量有明显的影响。这些结果需要在更大的代表性样本中得到证实。这个广泛意见调查的主题和问题将基于我们初步访谈中提出的信息。
