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Quality of life assessment in preterm children: physicians' knowledge, attitude, belief, practice--a KABP study

Marie-Ange Einaudi1, Catherine Gire, Anderson Loundou

  • 1Timone University Hospital, Espace Ethique Méditerranéen; Aix-Marseille University, UMR 7268 Anthropologie bio-culturelle, Droit, Éthique & Santé (ADÉS), Marseille, France. marieange.einaudi@ap-hm.fr

BMC Pediatrics
|April 23, 2013
PubMed

Insights

Physicians recognize the importance of quality of life (QoL) for extremely preterm infants but need standardized assessment tools. Their expectations for QoL data vary by specialty and can influence therapeutic decisions.

Area of Science:

  • Pediatrics
  • Neonatology
  • Neurology
  • Public Health

Background:

  • Extremely preterm birth sequelae significantly impact children's quality of life (QoL).
  • Standardized QoL assessment is infrequently performed for these children in France.
  • Physician perspectives on QoL assessment are crucial for improving care.

Purpose of the Study:

  • To evaluate physicians' knowledge, current practices, and expectations regarding standardized QoL assessment in extremely preterm children.
  • To understand the perceived relevance and potential impact of QoL assessment on clinical decision-making.

Main Methods:

  • Prospective survey of department heads in obstetrics, neonatology, and pediatric neurology.
  • Qualitative data collection through focus groups and the Delphi method.
  • Inclusion of 78 physicians: 24% obstetricians, 58% neonatologists, 18% pediatric neurologists.

Main Results:

  • Physicians acknowledge QoL as a relevant concept, currently assessed subjectively.
  • A significant need for information on standardized QoL assessment methods was identified.
  • Physicians described an ideal QoL questionnaire and expressed expectations for QoL data from medical, family, and societal viewpoints.
  • Potential influence of QoL measurement on ethical decision-making was discussed, with differing expectations across specialties.

Conclusions:

  • This study provides expert insights into the consideration of QoL for extremely preterm children.
  • QoL is a subjective concept that presents implementation challenges.
  • QoL assessment may influence therapeutic choices, highlighting the need for standardized, validated tools.
Abstract

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