Pierre Le Coz

Health-related quality of life and its determinants in children with a congenital diaphragmatic hernia

BackgroundThe development of new therapeutics has led to progress in the early management of congenital diaphragmatic hernia (CDH) in pediatric intensive care units (PICU). Little is known about the impact on the quality of life (QoL) of children and their family. The aim of this study was to assess the impact of CDH treated according to the most recent concepts and methods outlined above on child survivors’ QoL and their parents’ QoL.Patients and methodsThis study incorporated a cross-sectional design performed in two PICU (Marseille, France). Families of CDH survivors born between 1999 and 2008 were eligible. The following data were recorded: socio-demographics, antenatal history and delivery, initial hospitalization history. Self-reported data were collected by mail, including current clinical problems of the children (13-symptom list), children’s QoL (Kidscreen-27 questionnaire), and parents’ QoL (Short-Form 36 questionnaire). Children’s QoL score was compared with controls and QoL of survivors of childhood leukemia. Parent’s QoL was compared with controls. Non-parametric statistics were employed.ResultsForty-two families agreed to participate and questionnaires were completed by 32 of them. Twenty-one children had a current clinical problems related to CDH. All the QoL scores of CHD survivors were significantly lower compared with controls. The physical well-being dimension was significantly higher for CHD survivors compared with survivors of childhood leukemia. Gastro-esophageal reflux at discharge, antenatal diagnosis, length of stay in the PICU, and neuropsychological and respiratory issues significantly impacted QoL scores of children. The parents of CHD survivors had significantly poorer score in emotional role dimension compared with controls.ConclusionThe impact of CDH on QoL seems to be important and must be understood by clinicians who treat these children and their parents.

Barriers in Referring Neonatal Patients to Perinatal Palliative Care: A French Multicenter Survey

Background When an incurable fetal condition is detected, some women (or couples) would rather choose to continue with the pregnancy than opt for termination of pregnancy for medical reasons, which, in France, can be performed until full term. Such situations are frequently occurring and sometimes leading to the implementation of neonatal palliative care. The objectives of this study were to evaluate the practices of perinatal care french professionals in this context; to identify the potential obstacles that might interfere with the provision of an appropiate neonatal palliative care; and, from an opposite perspective, to determine the criteria that led, in some cases, to offer this type of care for prenatally diagnosed lethal abnormality. Methods We used an email survey sent to 434 maternal-fetal medicine specialists (MFMs) and fetal care pediatric specialists (FCPs) at 48 multidisciplinary centers for prenatal diagnosis (MCPD). Results Forty-two multidisciplinary centers for prenatal diagnosis (87.5%) took part. In total, 102 MFMs and 112 FCPs completed the survey, yielding response rate of 49.3%. One quarter of professionals (26.2%) estimated that over 20% of fetal pathologies presenting in MCPD could correspond to a diagnosis categorized as lethal (FCPs versus MFMs: 24% vs 17.2%, p = 0.04). The mean proportion of fetal abnormalities eligible for palliative care at birth was estimated at 19.30% (± 2.4) (FCPs versus MFMs: 23.4% vs 15.2%, p = 0.029). The degree of diagnostic certainty appears to be the most influencing factor (98.1%, n = 207) in the information provided to the pregnant woman with regard to potential neonatal palliative care. The vast majority of professionals, 92.5%, supported considering the practice of palliative care as a regular option to propose antenatally. Conclusions Our study reveals the clear need for training perinatal professionals in perinatal palliative care and for the standardization of practices in this field.

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

BackgroundThe 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.MethodsProspective 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.ResultsSeventy-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.ConclusionThis 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.

Metacognition: towards a new approach to quality of life

AbstractPurposeRecent studies have demonstrated that various diseases states (e.g., schizophrenia, Alzheimer’s disease) and events (e.g., a stroke) alter a person’s perception of their physical and mental status. Most often this involves alterations in a person’s metacognitive capabilities, and this can question the conceptual model of quality of life (QoL) based on a “perspectivist” approach.MethodsUsing the example of schizophrenia, we applied a philosophical model, developed by Griffin, to deal with this potential threat to the validity of QoL assessment.ResultsPatients with schizophrenia are at risk for being impaired in their ability to assess their QoL. We hypothesise that metacognition (i.e., the ability to attribute mental states in terms of beliefs and goals to one’s self and others) is a formal condition to assess QoL. This particular skill is important because self-reflection is necessary for making a qualitative judgment. A link between this psychological concept and the philosophical concept of reflexivity may be established. We propose a conceptual approach to QoL that takes into account the patient’s reflexivity. This approach is derived from Griffin’s theory based on the list of “prudential values” and the satisfaction of the informed desires of the individual.ConclusionThe ability of patients to evaluate and value their life should be considered to enrich the concept of QoL. The approach derived from Griffin’s theory might constitute a new avenue for QoL research.

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

BackgroundWhile 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).MethodsFocus 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.ResultsWe 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.ConclusionsThis 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.

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

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.

Delivering PET imaging results to cancer patients: steps for handling ethical issues

Delivering imaging results to cancer patients is an important aspect in their overall management. This duty is shared by all healthcare providers and could be considered as a good medical practice. However, currently no guidelines or legislation addressing the content and magnitude of information to be delivered to patients are available. Cancer patients are more likely to suffer from psychological distress and every new investigation could potentially further their stress related to uncertainties associated with their outcomes. The patients know that PET exams significantly impact the decision-making process. Furthermore, patients tend to find imaging reports as more objective than other medical test results, and they perceive them as the most conclusive evidence for their condition. Hence, they are particularly keen on enquiring about the results on the day of the PET procedure itself [1]. So, what would be the best approach towards sharing the imaging findings and interpretation with the patients while respecting the ethical principles and professional responsibility at their highest standards [2]? According to the principle of autonomy, patients should participate in every medical decision related to their health, implying discussion and proper communication of information. The principle of beneficence states that physicians must strive to provide benefit to patients, alleviate anxiety, and provide support in situations of vulnerability. Non-maleficence can be achieved by ensuring avoidance of unnecessary suffering by the patients, while the principle of justice advocates equal consideration and access to healthcare for all. One must remember that the patient-nuclear physician relationship is relatively unique since the physicians often lack insights into the patient’s actual psychological state, personality, level of knowledge, and awareness regarding their own disease. Moreover, the post-examination interaction could be limited due to radioprotection or logistic constraints. A recently performed French survey revealed a wide heterogeneity in practices [3]. One of the proposed approaches would be to set up pre-announced consultations in order to prepare patients to handle information pertaining to their health while consulting their referring physician, especially those asking for their results. For a maximal empathy and efficacy, these consultations must take place in a dedicated space with trained and motivated personnel with an awareness of ethical and moral issues and considering possible relevant cultural differences affecting the practitioner–patient communication exchange. In order to meet these requirements, it is therefore important to organize specific training programs dedicated to the announcement of results. These programs could provide communication tools and strategies in delivering terrible news to the patients. Ethical and communication skills may also be added to post-degree university curricula of nuclear physicians via taught courses and seminars. All could be coordinated at national and European level. * Sandra Gonzalez Sandra.GONZALEZ@ap-hm.fr

Guidelines for reporting secondary findings of genome sequencing in cancer genes: the SFMPP recommendations

In oncology, the expanding use of multi-gene panels to explore familial cancer predisposition and tumor genome analysis has led to increased secondary findings discoveries (SFs) and has given rise to important medical, ethical, and legal issues. The American College of Medical Genetics and Genomics published a policy statement for managing SFs for a list of genes, including 25 cancer-related genes. Currently, there are few recommendations in Europe. From June 2016 to May 2017, the French Society of Predictive and Personalized Medicine (SFMPP) established a working group of 47 experts to elaborate guidelines for managing information given on the SFs for genes related to cancers. A subgroup of ethicists, lawyers, patients’ representatives, and psychologists provided ethical reflection, information guidelines, and materials (written consent form and video). A subgroup with medical expertise, including oncologists and clinical and molecular geneticists, provided independent evaluation and classification of 60 genes. The main criteria were the “actionability” of the genes (available screening or prevention strategies), the risk evaluation (severity, penetrance, and age of disease onset), and the level of evidence from published data. Genes were divided into three classes: for class 1 genes (n = 36), delivering the information on SFs was recommended; for class 2 genes (n = 5), delivering the information remained questionable because of insufficient data from the literature and/or level of evidence; and for class 3 genes (n = 19), delivering the information on SFs was not recommended. These guidelines for managing SFs for cancer-predisposing genes provide new insights for clinicians and laboratories to standardize clinical practices.

Ethical issues and dentists' practices with children with intellectual disability: A qualitative inquiry into a local French health network

BACKGROUND The provision of dental care for children with intellectual disability raises many ethical questions. OBJECTIVE The aim of this qualitative study was to explore approaches to dental treatment in an anxious child with intellectual disability and the ethical dilemmas that ensue. METHODS Semi-structured interviews were conducted between February and May 2012. A clinical scenario was used to establish a starting point for a discussion of the clinical approach and lead to an ethical reflection. Four topics were discussed: first contact with the patient, information, attitude towards the patient and outcome from the practitioners viewpoint. The coding procedure used thematic content analysis. RESULTS Most practitioners fetched the patient from the waiting room personally, greeted them, gave them special attention, and either began the consultation at once, or used distraction to relax the patient. Verbal language and tell-show-do were most often used to provide information. Anxiety and pain were evaluated using parental assessment and standardized scales. A reassuring attitude was adopted. An ethical dilemma arose if the patient refused care or had to be restrained. Practitioners reported sacrificing ethical values (patient autonomy, beneficence and non-maleficence) when making a clinical decision. CONCLUSIONS There is a wide range of practices but no consensus. This study shed some light on the different perspectives of dentists, most of whom adopted a utilitarianist viewpoint. In this context, ethical reflection is necessary to avoid a detached attitude or, worse, abuse. Further study would enrich this reflection.