Preterm children quality of life evaluation: a qualitative study to approach physicians’ perception

BACKGROUND: 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). METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.