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

Einaudi, Marie-Ange; Gire, Catherine; Loundou, Anderson; Coz, Pierre Le; Auquier, Pascal

doi:10.1186/1471-2431-13-58

Cited by 19 publications

(17 citation statements)

References 24 publications

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“…French physicians seem reticent toward a quantitative evaluation of QoL, because they fear it may be a “reductive” tool [ 11 ]. Application of this concept thus appeared maleficent in view of the use to which it could be put (decisions to withhold or withdraw treatment), just like the idea that the value of life could be relative if it was evaluated in terms of quality.…”

Section: Discussionmentioning

confidence: 99%

“…In the following, we will present briefly the main results of two French studies on the subject: the French preterm children QoL consideration and the physicians’ perception of such evaluation [ 10 , 11 ]. Thereafter, on the basis of these results, we will explain in the discussion, how consideration of preterm children QoL could have its place in an ethical perspective.…”

Section: Introductionmentioning

confidence: 99%

“…An opinion survey was carried out after ethical approval, in 78 French physicians (heads of obstetrics, neonatal medicine and paediatric neurology departments) by means of questionnaires developed after preliminary interviews: QoL was defined as a complex concept, as the physicians mainly took account of psychological and physical well-being and family relationships [ 11 ]. The concept was generally approached subjectively.…”

Section: Introductionmentioning

confidence: 99%

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How do physicians perceive quality of life? Ethical questioning in neonatology

Einaudi

Gire²,

Auquier

et al. 2015

BMC Med Ethics

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BackgroundThe 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.DiscussionIf 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).SummaryA 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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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How do physicians perceive quality of life? Ethical questioning in neonatology

Einaudi

Gire²,

Auquier

et al. 2015

BMC Med Ethics

Self Cite

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show abstract

“…68 In a French national survey, the majority of neonatologists, obstetricians, and pediatric neurologists stated that predicting HRQL in the long term for preterm infants would be beneficial for consulting parents about what additional responsibilities they can anticipate in caring for their child. 69 The trajectory of HRQL from childhood to young-adulthood appears to improve in both VLBW and extremely low gestational age populations. 70 Prediction modeling might aid in determining which factors could positively or negatively impact HRQL in this vulnerable population.…”

Section: Conceptual Considerationsmentioning

confidence: 99%

Predicting the outcomes of preterm neonates beyond the neonatal intensive care unit: What are we missing?

2020

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Preterm infants are a population at high risk for mortality and adverse health outcomes. With recent improvements in survival to childhood, increasing attention is being paid to risk of long-term morbidity, specifically during childhood and young-adulthood. Although numerous tools for predicting the functional outcomes of preterm neonates have been developed in the past three decades, no studies have provided a comprehensive overview of these tools, along with their strengths and weaknesses. The purpose of this article is to provide an in-depth, narrative review of the current risk models available for predicting the functional outcomes of preterm neonates. A total of 32 studies describing 43 separate models were considered. We found that most studies used similar physiologic variables and standard regression techniques to develop models that primarily predict the risk of poor neurodevelopmental outcomes. With a recently expanded knowledge regarding the many factors that affect neurodevelopment and other important outcomes, as well as a better understanding of the limitations of traditional analytic methods, we argue that there is great room for improvement in creating risk prediction tools for preterm neonates. We also consider the ethical implications of utilizing these tools for clinical decision-making.

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“…Proprietary QOL questionnaires have been applied to various pediatric illnesses, for example, sickle cell disease, inflammatory bowel disease, dermatologic conditions, epilepsy, autism, and head injuries . When considered together, these studies indicate that QOL surveys should be modified for application to specific ages and disease entities . Even with such targeting, however, some survey recipients have expressed dissatisfaction with relevance of the questions to their life situations …”

Section: Methodsmentioning

confidence: 99%

Survey of quality of life, phenotypic expression, and response to treatment in Krabbe leukodystrophy

et al. 2019

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Objectives To develop a quality of life (QOL) survey for Krabbe disease (KD), and to thereby improve understanding of its phenotypic expression and response to treatment. Methods The survey, the Leukodystrophy Quality of Life Assessment (LQLA) and the Vineland Adaptive Behavior Scales were co‐administered to 33 patients or their caretakers. These included the phenotypes of early infantile KD (EIKD; 0‐6 months old at onset), late infantile cases (LIKD; 7‐12 months old at onset), and cases that emerged after 12 months old, late onset (LOKD). The sample included cases with and without stem cell transplantation (SCT). Reliability and concurrent validity were assessed for overall and subscale scores. Analysis of variance tested differences in QOL between phenotypes and transplant groups (none, pre‐, post‐symptom). Results Good concurrent validity with the Vineland was shown for total, communication, daily activity, social, and motor scales and good reliability was observed. LOKD cases had better communication skills than either EIKD or LIKD and better overall QOL than EIKD. Analyses of individual items showed that communication items, mostly, contributed significantly to phenotype differences. Presymptomatic SCT significantly improved QOL compared to postsymptomatic SCT or no treatment. Presymptomatically treated patients had near‐normal total scores. Conclusions The LQLA is valid and reliable. Despite small sample size, phenotypic demarcation was determined to be due mainly to differences in communication skills. There was a relative enhancement of QOL in LOKD patients, and in those who had presymptomatic SCT. These results apply to the current controversy about recommendations for newborn screening for this condition.

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

Cited by 19 publications

References 24 publications

How do physicians perceive quality of life? Ethical questioning in neonatology

How do physicians perceive quality of life? Ethical questioning in neonatology

Predicting the outcomes of preterm neonates beyond the neonatal intensive care unit: What are we missing?

Survey of quality of life, phenotypic expression, and response to treatment in Krabbe leukodystrophy

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