Article

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

BMC Pediatrics (Impact Factor: 1.92). 04/2013; 13(1):58. DOI: 10.1186/1471-2431-13-58
Source: PubMed

ABSTRACT Background
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.

Methods
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.

Results
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.

Conclusion
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.

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    ABSTRACT: Background 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. Methods 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. Results 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. Conclusion 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.
    BMC Pediatrics 04/2013; 13(1):58. DOI:10.1186/1471-2431-13-58 · 1.92 Impact Factor
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    ABSTRACT: Background The outcome of very preterm infants is marked by the development of complications that can have an impact on the quality of life of the children and their families. The concept of quality of life and its evaluation in the long term raise semantic and ethical problems for French physicians in perinatal care. Our reflection aims to gain a better understanding of the representations surrounding quality of life in neonatal medicine. Discussion If French physicians hesitate to face this concept (through self-interest and apprehension), it is because the debate has become more complex. Formerly, the dilemma was between respect for life versus quality of life. Today, although this dilemma is still with us, the questions raised by French physicians show us that autonomy is given increasing importance. The equation to be solved now contains three variables: respect for life, well-being, autonomy. So we find ourselves between three positions and no longer two: respect for life (the ethics of conviction), quality of life based on autonomy (rationalist and secular deontologism), and quality of life based on the differential between well-being and suffering (utilitarianism). Summary A solution could lie in consequentialism, which integrates the consequences for future generations in terms of both safeguarding of autonomy and quality of life, and puts the sacredness of life in second place but without sacrificing it. By evaluating their future quality of life, we can better respond to the needs of these children.
    BMC Medical Ethics 07/2015; 16. DOI:10.1186/s12910-015-0045-5 · 1.60 Impact Factor

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