Annie Janvier

Annie Janvier
Université de Montréal | UdeM

MD, PhD

About

191
Publications
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Publications

Publications (191)
Article
Full-text available
Rapid whole genome sequencing (WGS) and whole exome sequencing (WES), sometimes referred to as “next generation sequencing” (NGS) are now recommended by some experts as a first-line diagnostic test to diagnose infants with suspected monogenic conditions. Estimates of how often NGS leads to diagnoses or changes in management vary widely depending on...
Article
This report is informed by the themes of the session Trisomy 13/18, Exploring the Changing Landscape of Interventions at NeoHeart 2020—The Fifth International Conference of the Neonatal Heart Society. The faculty reviewed the present evidence in the management of patients and the support of families in the setting of trisomy 13 and trisomy 18 with...
Article
Full-text available
Background and objective Neonatal outcome research and clinical follow-up principally focus on neurodevelopmental impairment (NDI) after extremely preterm birth, as defined by the scientific community, without parental input. This survey aimed to investigate parental perspectives about the health and development of their preterm children. Methods...
Article
The philosophy of care in Neonatal Intensive care Units (NICU) has changed with increasing integration of families. We examined parents’ and clinicians’ perspective about Family Integrated Care (FiCare) in our quaternary NICU. We found that parents and clinicians reported many benefits for families. They were all enthusiastic about FiCare for non-m...
Article
Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a level of care that they believe is not in the patient's interests, resulting in moral distress. Thi...
Article
Communication with parents is an essential component of neonatal care. For extremely preterm infants born at less than 25 weeks, this process is complicated by the substantial risk of mortality or major morbidity. For some babies with specific prognostic factors, the majority die. Although many of these deaths occur after admission to the intensive...
Article
Available data in the care of infants born at less than 25 weeks of gestation are limited and are largely inferred from studies of more mature infants. Most clinical trials include no data from babies born at 22 weeks and very few born at 23 or 24 weeks of gestation. In the absence of robust data, the treatment of infants born at less than 25 weeks...
Article
Objectives To describe the perspective of parents who participated in peer-to-peer support meetings between parents of children in Neonatal Intensive Care Unit (NICU) and veteran resource parents with a previous NICU experience. Study design During a longitudinal evaluation in a tertiary care NICU, participating parents were asked to evaluate meet...
Article
Primary Subject area Neonatal-Perinatal Medicine Background Preterm birth outcome studies and clinical follow-up have traditionally focused on neurodevelopment. We previously showed in a selected sample of parents that they also valued other types of outcomes. Objectives This study aimed to validate these findings in a more diverse cohort by exam...
Article
Aim: This study assessed the self-reported health perception and use of healthcare by adults born very preterm before 30 weeks of gestation. Methods: The participants were part of a cross-sectional observational study that assessed the global health of young adults aged 18-29 years born very preterm in Quebec, Canada. Health perception was explo...
Article
Background and objectives: To longitudinally examine the nature of moral distress (MoD) experienced by clinicians caring for extremely low gestational age neonates. Methods: Neonatologists, medical trainees, and nurses were surveyed at regular intervals on their experience of MoD and their preferred level of care in relation to 99 neonates born...
Article
Objective The study aimed to explore experiences of extremely preterm infant loss in the delivery room and perspectives about antenatal consultation. Study Design Bereaved participants were interviewed, following a semi-structured protocol. Personal narratives were analyzed with a mixed-methods approach. Results In total, 13 participants, reflectin...
Article
Aim To describe how Canadian level III neonatal intensive care units (NICU) organize Mortality and Morbidity Rounds (M&MR) and explore clinicians’ perspectives. Methods This questionnaire study, including open-ended questions, examined the following domains: (1) M&MR format, (2) ethical issues and (3) limitations and perceived effectiveness. Resu...
Article
I was born preterm at 26 weeks of gestation in 1992 and I spent three months in the hospital. At discharge, my parents were told that my lungs could be permanently impaired (due to bronchopulmonary dysplasia), but that it should not prevent me from doing my everyday life activities. They were also warned about adverse neurological outcomes and lear...
Article
Full-text available
Context: Partnership between patients and health-care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. Objective: To co-construct a tool for measuring the degree of partnership between patients and HCPs. Design: The CADICEE tool was developed in four steps: (1) generate key dimensio...
Article
This case report shares the story of a family who sought care elsewhere after their daughter was denied cardiac surgery in their home state because she had trisomy 18. This case report recommends case-by-case assessment of cardiac surgical interventions for children with trisomy 13 or 18 as informed by review of goals, assessment of comorbidities,...
Article
Full-text available
Objective: Although stakeholders’ participation in healthcare is increasingly recommended, bereaved parents are often excluded for perceived potential risks to them. The objective of this study is to describe the ongoing involvement and the perspectives of bereaved parents engaged in different types of activities in Neonatal Intensive Care Units an...
Article
Background Extremely preterm birth is associated with death and a higher risk of adverse long-term outcomes. Neurodevelopmental impairment (NDI) has become the focus of neonatal follow-up and outcome research, with classifications chosen by clinicians and researchers. However, parents were never consulted about this classification. Objectives To e...
Article
Background Preterm birth is associated with higher risk of death and severe neurodevelopmental impairment. There is an increased risk in extremely preterm infants, raising questions among ethicists and clinicians as to whether providing active care to infants born at the lower extreme is worth the outcomes, and if these outcomes are a source of dec...
Article
Le curriculum de médecine de la Faculté de médecine de l’Université de Montréal connait plusieurs mutations majeures, dont l’adoption d’une nouvelle approche relationnelle dite de partenariat avec le patient et ses proches. L’approche repose sur le postulat du patient considéré comme acteur en possession d’un savoir important pour la formation des...
Article
Parenting in the NICU is an intense journey. Parents struggle to build intimacy with their child amid complex emotions and medical uncertainties. They need to rapidly adapt their vision of parenthood to the realities of intensive care. The psychological impact of this journey can have important effects on their psychological health. For parents of...
Article
In a crisis, societal needs take precedence over a patient’s best interests. Triage guidelines, however, differ on whether limited resources should focus on maximizing lives or life-years. Choosing between these two approaches has implications for neonatology. Neonatal units have ventilators, some adaptable for adults. This raises the question of w...
Article
Administrators and providers worry about an overwhelming shortage in critical life‐saving ventilators for adults during the COVID‐19 pandemic. Attention has focused on developing algorithms for ventilator allocation using several factors, including: pre‐existing illness, likelihood to return to baseline health, and length of ventilation (a negative...
Article
Aim Describe the development of peer‐to‐peer support meetings between parents of children in Neonatal Intensive Care Unit (NICU) and veteran resource parents who had a previous NICU experience. Methods The study had two steps: a needs assessment and a feasibility pilot study. Parental perspectives were investigated using mixed methods. Results 15...
Chapter
Although neonatologists are not newcomers to issues related to life and death, how infants die in the intensive care unit has changed. Previously infants died in spite of life sustaining interventions. Now, infants generally die after intensive care is withdrawn or withheld, either because infants are physiologically unstable or for reasons of qual...
Article
Background and objectives: Clinicians are urged to optimize communication with families, generally without empirical practical recommendations. The objective of this study was to identify core behaviors associated with good communication during and after an unsuccessful resuscitation, including parental perspectives. Methods: Clinicians from dif...
Article
A 530-g girl born at 22 weeks and 6 days' gestation (determined by an ultrasound at 11 weeks) was admitted to the NICU. Her mother had received prenatal steroids. At 12 hours of age, she was stable on low ventilator settings. Her blood pressure was fine. Her urine output was good. After counseling, her parents voiced understanding of the risks and...
Article
Background Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have not been well described. Aim (1) To investigate parental experiences with clinicians and...
Article
Objectives: To analyze activities involving veteran resource parents and patients in a family partnership program; their perspectives were also explored. Study design: The multiple roles assumed by family stakeholders in neonatal initiatives were reviewed. Quality control questionnaires were distributed to resource parents and patients and provi...
Article
Full-text available
Objectives: To analyze activities involving veteran resource parents and patients in a family partnership program; their perspectives were also explored. Study design: The multiple roles assumed by family stakeholders in neonatal initiatives were reviewed. Quality control questionnaires were distributed to resource parents and patients and provider...
Article
Aim To develop a neonatal intervention score to describe the clinical trajectory of a neonate throughout their neonatal intensive care unit (NICU) admission. Methods The Neonatal Intervention Score (NIS) was developed by modifying the Neonatal Therapeutic Intervention Scoring System (NTISS) to reflect illness severity, dependency on life‐sustainin...
Article
Background: Parents and their infants are the beneficiaries of neonatal and pediatric research, but in the past they have been excluded from most stages of research projects. As a result, many projects may fail to produce the most worthwhile information for parents and families. Lately, veteran resource parents and patients have been increasingly...
Article
Full-text available
Parents’ understanding/expectations regarding genetic testing for children with developmental disorders were explored. Within a month of testing, interviews were conducted with 57 parents. Many (74%) could not recall the nature of testing. Parents expected genetic testing to have positive impacts for the child (93%) and the family (98%), mainly to...
Article
Objectives: To assess paediatricians' use of genetic testing for children with global developmental delay (GDD). Study design: We developed and piloted a questionnaire assessing the use of genetic tests in children with GDD and awareness of relevant guidelines. All practicing Quebec paediatricians were contacted. Paediatricians who did not evalu...
Article
Objectives: To use structured surveys to assess the perspectives of pediatric residents and neonatal nurses on resuscitation decisions for vulnerable patients, including neonates. Study design: Pediatric providers were surveyed using scenarios for 6 critically ill patients of different ages with outcomes explicitly described. Providers were asked (...
Article
Aim To explore pediatric trainees’ experiences and perspectives regarding interactions and relationships between physicians and patients’ parents. Methods Email survey was sent to AAP Section of Pediatric Trainees members. Trainees were asked about 40 interactions with parents as well as perceived benefits/risks and potential influences. Analysis...
Article
Objectives: To explore parental perspectives regarding their preterm child at 18 months corrected age and to investigate whether reported answers correlate with level of neurodevelopmental impairment (NDI) as defined by clinicians. We hypothesized that parents would report more negative concerns with increasing level of NDI. Study design: This s...
Article
Aim We examined how physicians in different medical specialties would evaluate treatment decisions for vulnerable patients in need of resuscitation. Methods A survey depicting six acutely ill patients from newborn infant to aged, all in need of resuscitation with similar prognoses, was distributed (in 2009) to a representative sample of 1650 membe...
Article
Aim: Investigate paediatricians' expectations and perspectives of genetic testing for children with developmental disorders. Methods: Paediatricians working in a developmental clinic were surveyed each time they ordered a chromosomal microarray (CMA) for a child with developmental disorders. Clinical charts were reviewed. Results were analysed u...
Article
Background: It is not known how neonatologists address the affective and cognitive loads on parents deciding whether to resuscitate infants born extremely preterm. This study explores expert neonatologists' views on these decision-making processes and their own roles in counseling parents. Methods: Semi-structured interviews asked internationall...
Article
Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of support to new parents. They can also assume other roles in clinical care, research, administr...
Article
Background Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. Objective To explore clinical experiences, perspectives and perceptions of moral distress in neonatology. Design An anonymous questionnaire was distributed to medical and nursing prov...
Article
The neonatal intensive care unit is recognized as a stressful environment; the nature of caring for sick babies with uncertain outcomes and the need to make difficult decisions results in a work place where moral distress is prevalent. According to the prevailing definition, moral distress occurs when the provider believes that what is "done" is no...
Article
Aims: This study explored how paediatric healthcare professionals experienced and coped with end-of-life conflicts and identified how to improve coping strategies. Methods: A questionnaire was distributed to all 2,300 professionals at a paediatric university hospital, covering the frequency of end-of-life conflicts, participants, contributing fa...
Article
Objectives: To use structured surveys to assess the perspectives of pediatric residents and neonatal nurses on resuscitation decisions for vulnerable patients, including neonates. Study design: Pediatric providers were surveyed using scenarios for 6 critically ill patients of different ages with outcomes explicitly described. Providers were aske...
Article
Aim: Perinatal deaths occurring outside the neonatal intensive care unit (NICU) are rarely recorded in outcome studies, despite having a direct impact on perinatal statistics. Our aim was to investigate the timing and modes of perinatal deaths that occurred outside the NICU and changes over time. Method: We reviewed all perinatal deaths from 22...
Article
Full-text available
Objective: To compare two perspective taking strategies on (i) clinicians' ability to accurately identify negative thoughts and feelings of parents of children with cancer, and (ii) clinician distress. Methods: Sixty-three hematology-oncology professionals and nursing students watched a video featuring parents of children with cancer. Participan...
Article
Objectives: Assess impact of neonatal simulation and simulated death on trainees' stress and performance. Design: A parallel-group randomized trial (November 2011 to April 2012). Setting: Sainte-Justine University Hospital, Montreal, Canada. Subjects: Sixty-two pediatric trainees eligible, 59 consented, and 42 completed the study. Intervent...
Article
Technological progress and improved clinical knowledge have increased survival of neonates who would previously have died. Survival is sometimes accompanied by a risk of short- or long-term adverse outcomes, which may lead to complex decisions about withholding or withdrawing life-sustaining interventions. These decisions are among the most difficu...
Article
The majority of neonatal deaths occur after a decision to limit life-sustaining interventions (LSIs).1 Decisions on when to withhold/withdraw LSIs in fragile neonates are among the most difficult decisions in paediatric practice. Two rigorous investigations shed some light on this topic. Durrmeyer et al 2 systematically described the management of...
Conference Paper
Background Accurate self-assessment of clinical competence impacts learning. When using medical simulation to teach about end of life care, group or one-to-one feedback is usually performed. Objective To evaluate if self-assessment of performance is accurate and useful after simulated death. Design/Methods Providers familiar with neonatal resuscita...
Conference Paper
Background Providers are urged to communicate in an empathic and ethical manner when having difficult conversations with parents, generally without practical evidence-based suggestions. Objective Investigate communication with parents during/after an unsuccessful neonatal resuscitation and evaluate what represents optimal communication skills. Desi...
Article
Objective: Ethically and legally, assertions that resuscitation is in a patient's best interest should be inversely correlated with willingness to forego intensive care (and accept comfort care) at the surrogate's request. Previous single country studies have demonstrated a relative devaluation of neonates when compared with other critically ill p...
Chapter
According to bioethical principles, babies and older patients should be treated according to the same standards. In practice, newborn infants are treated differently in ways which show that they are valued less than older individuals. We provide six specific examples of this differential treatment and analyse the possible consequences of this deval...
Article
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3) clinical trials (whether an intervention improves outcomes), (4) end-of-life decision-making, (5) to better understa...
Article
Objective: To explore prospective mothers' perspectives regarding antenatal consultations by neonatology teams for threatened preterm delivery. Study design: In a prospective multicenter study, women at risk of preterm delivery between 26 and 32 weeks of gestational age were surveyed during the 72 hours following their antenatal consultation. Th...
Article
For parents, the experience of having an infant in the NICU is often psychologically traumatic. No parent can be fully prepared for the extreme stress and range of emotions of caring for a critically ill newborn. As health care providers familiar with the NICU, we thought that we understood the impact of the NICU on parents. But we were not prepare...
Article
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English-speaking social networks...
Article
I was at Émile’s bedside, one of the newly admitted preemies. I didn’t hear anybody enter the room and so was surprised when a boisterous male voice asked:“What’s up with the tattoos?”I turned to see a tall and large man. I wondered when he could possibly have seen my tattoos. At work, my 20 hours of ink job are hidden under my scrubs. Should I ask...
Article
Interventions for extremely preterm infants bring up many ethical questions. To answer these questions, data are needed. The investigators of the Epipage-2 study have conducted a rigorous investigation: they report outcomes for all 2145 neonates born between 22 and 26 weeks of gestational age (GA) in France in 2011.1 Their primary outcome measure w...
Article
Objective: To determine tolerability of bovine lactoferrin (bLF) in very preterm infants, and whether the intervention can be adequately masked. Study design: In a single-center masked pilot trial infants under 31 weeks gestation were randomized before 48 h of age to receive milk with 100 mg per day of bLF or control. The primary outcome was fee...