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What is trained develops!
Hermundur Sigmundsson, Monika Haga
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00005]
Nutrition Support in Children with Neurologic Disabilities
Joanna Soscia and Sanjay Mahant
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00006]
Caring for children with medical complexity: definitions, challenges and solutions
Eyal Cohen and Jeremy Friedman
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00007]
Technology-dependent Children: The Chronically Ventilated Child
Reshma Amin, Arlene Chaves, Faiza Syed and Theo Moraes
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00008]
Long-term Survivors of Cancer in Childhood and Adolescence
Stacey L. Urbach , Sharon Guger and Paul Nathan
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00009]
Complex Obesity
Paola Luca, Catherine Birken, FRCPC, Preeti Grewal, Elizabeth Dettmer and Jill Hamilton
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00010]
Quality and Safety in Pediatric Complex Care
Maitreya Coffey and Ronald M. Laxer
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00011]
The Perfect Storm:
Paige Terrien Church, Maureen Luther and Elizabeth Asztalos
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00012]
Living life to the fullest: Early integration of palliative care into the lives of children with chronic complex conditions
Adam Rapoport
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00013]
Complex Children: Forwarding a Policy Agenda
Charlotte Moore, Jessica Duby and Astrid Guttmann
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00014]
Pre-viable Newborns in Saudi Arabia: Where are we now and what the future may hold?
Saleh Al-Alaiyan, Sameer Al-Abdi, Jubara Alallah, Fahad Al-Hazzani and Khalid AlFaleh
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00015]
The Peri-Viable Baby Down Under – An Australian perspective on the “grey zone” of viability
Risha Bhatia, Lex W Doyle and Peter G Davis
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00016]
Management of periviable newborns in the Nordic countries
Thor Willy Ruud Hansen and Ola Didrik Saugstad
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00017]
Does data shape moral decision? Or do values shape the data?
John D. Lantos
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00018]
Neonatology In The United States: Where We Are, And Where We Are Going
William Meadow
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00019]
The Premature Lottery In The Canadian Grey Zones
Annie Janvier and Prakesh S Shah
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00020]
Coping with the Dilemmas of Extremely Preterm Birth: Outcome or Ethics?
Umberto Simeoni and Dominique Haumont
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00021]
The Italian debate on the lowest threshold of viability and fetal-neonatal-maternal rights: conflicts between law, case law, religious insights and clinical practice
Mariarosaria Di Tommaso
[Abstract] [FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00022]
Abstracts
What is trained develops!
Hermundur Sigmundsson, Monika Haga
[FULL-TEXT
INQUIRY] [BSP/CPR/E-Pub/00005]
Knowledge about developmental theories is important for experts
or specialists working with children who have different kind
of dysfunctions, both to better the understanding of the problem
and to provide more effective intervention. The article describes
two approaches to development and learning: Gottlieb's theory
of probabilistic epigenesis and Edelman's theory of neural
Darwinism. Probabilistic epigenesis is a theory emanating
from embryology. The probabilistic epigenesis theory focuses
on the bidirectional relation between structure and function.
Edelman's theory argues that learning can be explained as
selection within the nervous system. The theory emphasis how
neural connections in specific areas of the brain increases
as a result of stimulus and training. It is possible to argue
that this theory supports the theory of task specificity of
learning. When dealing with children with language and motor
problems it is important to pay attention to these new theoretical
perspectives. Firstly, they can guide us to design relevant
research questions and influence how we interpret our results.
Secondly, in a practical and clinical setting, the notion
of task specificity of skill learning implicate that we must
decide what tasks are important for the children to acquire
- and facilitate sufficient practise to learn that specific
task
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Nutrition Support in Children with Neurologic Disabilities
Joanna Soscia and Sanjay Mahant
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00006]
Children with complex chronic conditions commonly face health issues related to feeding and nutrition. In this paper, we focus on feeding problems and undernutrition in children with neurologic disabilities. Children with neurologic disabilities often have growth problems related to nutritional and non-nutritional causes. The feeding problems and resulting undernutrition have diverse impacts on the child’s and family’s health, social well-being, and quality of life. Appropriate management of the child’s health issues and support of the family in this process is critical. A systems based perspective on the role of nutrition support programs in the management of children with complex chronic conditions is discussed. We review nutritional assessment and management including the use of technology assistive devices such as gastrostomy tubes and the evidence base around their effectiveness. We also discuss the management of gastroesophageal reflux disease and dysmotility.
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Caring for children with medical complexity: definitions, challenges and solutions
Eyal Cohen and Jeremy Friedman
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00007]
Increasing prevalence of children with complex and chronic diseases has occurred in the last half century and will likely continue to occur. These children, their parental caregivers, their families and the health care system are challenged in providing seamless coordinated care that optimizes outcomes in an effective and efficient manner. This paper outlines some potential solutions including clarifying definitions of the population and evaluations of existing and evolving models of care such as the chronic care model, the primary care medical home and non-primary care practice based models, such as comprehensive clinics focused on a specific disease or population, comprehensive clinics focused on a non-categorical population (not focused on a single/limited set of disease(s)), interventions focused on home care; and, other models focusing on more limited types of interventions or policy change. Ongoing growth in impact of complex chronic disease of childhood demands increased attention across sectors of care as an immediate area of focus for child health policy.
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Technology-dependent Children: The Chronically Ventilated Child
Reshma Amin, Arlene Chaves, Faiza Syed and Theo Moraes
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00008]
This review focuses on the principles and practices of long-term mechanical ventilation in infants and children. The number of pediatric patients receiving chronic ventilation has been growing exponentially over the past decade. Chronic respiratory failure in children is highly variable and the ideal ventilation modality must be tailored to the needs of the individual patient and family. Despite the medical complexity involved in the care of these children, many are optimally managed in the home environment. Successful transition to home with a favorable outlook is aided by frequent follow up, a family centered approach and anticipatory guidance, all delivered by an experienced multidisciplinary team.
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Long-term Survivors of Cancer in Childhood and Adolescence
Stacey L. Urbach , Sharon Guger and Paul Nathan
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00009]
Significant improvements in the treatment of many pediatric malignancies have led to a growing population of long-term survivors of childhood cancer. Many of these survivors are at significant risk for late physical and psychosocial sequelae (“late effects”) as a result of their prior disease and its therapy. In some survivors (such as children treated for a brain tumor), late effects including endocrine dysfunction and neurocognitive challenges can develop during therapy and persist throughout life. In others (such as children and adolescents treated for Hodgkin’s lymphoma), late effects including congestive heart failure, pulmonary fibrosis and secondary breast cancers may not occur for many years, often once survivors have reached adulthood. During childhood, survivor care usually occurs at the pediatric cancer center, often in a specialized long-term follow-up clinic. However, adult survivors are usually cared for by primary care practitioners in their own communities. It is essential that the health care providers who will care for childhood cancer survivors as they age be aware of each survivor’s treatment exposures, long-term risks, and the surveillance strategies suggested for monitoring for these late effects. Strategies for effective transition from pediatric care and for ongoing communication between primary care practitioners and pediatric cancer centers need to be implemented to ensure that childhood cancer survivors receive appropriate care focused on their specific risks throughout their lifespan.
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Complex Obesity
Paola Luca, Catherine Birken, FRCPC, Preeti Grewal, Elizabeth Dettmer and Jill Hamilton
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00010]
‘Complex severe obesity’ in children and adolescents can be defined as a BMI >95th percentile for their age and gender in addition to at least one significant obesity-related co-morbidity requiring specialty care, other co-existing chronic illness impacted by obesity, or a BMI ≥99th percentile for their age and gender. These children are at high risk of acute and long-term medical and psychosocial morbidities. Optimal management strategies for this group of patients are not well studied, although general principals include emphasis on a comprehensive family-based lifestyle intervention, while addressing medical and psychological aspects of obesity, as well as motivation to change behaviours. Further treatment options, such as bariatric surgery, may be necessary, but requires a skilled interdisciplinary team and careful selection of candidates most likely to benefit from these procedures.
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Quality and Safety in Pediatric Complex Care
Maitreya Coffey and Ronald M. Laxer
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00011]
In parallel with the evolving recognition of children with medical complexity (CMC) as a specific and important population over the last decade, there has been a simultaneous increase in interest in healthcare quality. This article provides a theoretical overview of healthcare quality followed by a focused review of aspects of quality as they specifically pertain to the care of CMC. The importance of considering the full spectrum from the larger political and economic environment to the individual clinical microsystem is emphasized. Issues around measurement for the purpose of quantifying and improving healthcare quality are addressed, with a brief examination of emerging quality measures specifically for pediatrics and CMC. The Model for Improvement , a method for conducting formal quality improvement is described, and the distinction between this type of approach and traditional biomedical research is explained. A framework for addressing specific domains of healthcare quality is outlined, including safety, timeliness, efficacy, efficiency, equitability, and family-centredness. Challenges with delivering high quality healthcare specific to CMC are detailed, and corresponding specific interventions are described, drawing from an extensive literature review and from our own local experience. Areas of emphasis include barriers to access to appropriate care for CMC, the role of care coordination, hospital care of CMC (recognition of the deteriorating child, medication safety, and care of the child with technology dependence), and the burden of care for families of CMC. Gaps in current knowledge are addressed and recommendations for future research and practice are put forth.
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The Perfect Storm:
Paige Terrien Church, Maureen Luther and Elizabeth Asztalos
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00012]
The landscape of neonatal follow up is starting to shift. While there is continued emphasis on the traditional outcomes studied, including cerebral palsy, vision/hearing impairment, and cognitive impairment, there is a shift in focus to those outcomes which are much more prevalent and collectively can contribute to significant morbidity. The purpose of this review is to explore the outcomes of the preterm survivor, in the context of the principles of neurodevelopment. Approaching these outcomes from a developmental perspective provides insight into the challenges in early identification and management of these highly prevalent outcomes. In addition, we will explore the underlying brain injury associated with the preterm infant, particularly as it relates to the high prevalence low severity outcomes. We will also review the impact of this pattern in terms of clinical presentation and academic performance. Finally, we will look at the limitations within the medical system and community that potentially exacerbate the difficulties of the preterm survivor.
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Living life to the fullest: Early integration of palliative care into the lives of children with chronic complex conditions
Adam Rapoport
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00013]
Increasing numbers of children living with chronic complex conditions also means an increase in the number of children with a potentially life-threatening illness. While curative and life-prolonging therapies continue to stretch the boundaries of what is possible, pediatric mortality remains highest among this group of children. In light of their medical fragility and unpredictable trajectories, children with chronic complex conditions are ideal candidates for palliative care. Integration of palliative care concurrently with curative or life-prolonging therapies results in improved outcomes and is widely endorsed as the most appropriate model of care for this population of children. This paper dispels common misconceptions about pediatric palliative care and outlines the benefits realized by children living with chronic complex conditions, and their families, when palliative care is introduced early in the course of their illness. Practical suggestions to facilitate difficult conversations and to manage challenging clinical situations are provided.
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Complex Children: Forwarding a Policy Agenda
Charlotte Moore, Jessica Duby and Astrid Guttmann
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00014]
Children with complex illness present a challenge to our current system of care organization. This paper explores the policy issues raised by this new and specific population of paediatric patients, and suggests that effective system re-engineering must consider both the broader demographic and economic realities informing health system decision-making as well as the dominant health policy prerogatives of the health system writ large. The fundamentals of the policy process will be emphasized and a road map for change will be presented.
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Pre-viable Newborns in Saudi Arabia: Where are we now and what the future may hold?
Saleh Al-Alaiyan, Sameer Al-Abdi, Jubara Alallah, Fahad Al-Hazzani and Khalid AlFaleh
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00015]
Rates of population growth, total fertility and birth among the Saudi population are increasing, resulting in more than half a million new borns delivered every year. Despite this significant number of deliveries, there is still an existing shortage in NICU (neonatal intensive care unit) beds in tertiary level hospitals. The percentage of pre-viable newborns in Saudi Arabia is similar to most countries worldwide. We agree that the definition of pre-viability is vague rather than distinct. Recently, a religious opinion regarding resuscitation of pre-viable newborns was issued from Saudi Arabia. It states that for infants born at less than 6 lunar months (252/7 weeks), two specialist physicians could assess the infant’s clinical condition at birth and based on their opinion the infant could be offered full resuscitation if it is beneficial to the infant or he or she can be left without intervention to die but should not be deprived of nutrition or fluids. In this review, we compared the outcome of infants less than 1500 grams in three tertiary hospitals in Saudi Arabia with outcome of infants recently published by NICHD. We found that outcomes of these infants born in our tertiary level hospitals are comparable with the outcome of similar groups from NICHD. We strongly believe that clear guidelines are highly needed to support shared decision making to avoid inconsistency in managing ELBW infants at all Saudi hospitals.
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The Peri-Viable Baby Down Under – An Australian perspective on the “grey zone” of viability
Risha Bhatia, Lex W Doyle and Peter G Davis
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00016]
Australia is a prosperous, culturally diverse country where respect for quality of life, freedom of speech and religion as well as equal opportunities for all, are values that rank highly amongst society. Its unique physical geography and population distribution continually challenge the health-care system. There are high expectations by both health care providers as well as consumers when emotive issues surrounding the care of a vulnerable infant arise. The care of the peri-viable infant is one such issue. Moral dilemmas arise from providing intensive care to extremely preterm infants. How far should we, as health care professionals go to preserve life? Should we continue to provide aggressive life-sustaining treatments with the knowledge that there will be some babies and families who will experience significant disability, emotional suffering and financial hardship? In a society such as this, and while uncertainty surrounding survival and morbidity, varying methods of management, and the differing professional and personal views of health professionals, parents, and arbiters of law exist, the care of the peri-viable infant will continue to remain a challenge. This paper aims to describe how Australia’s laws and social and medical practices have allowed us to manage infants born in the “grey zone” of viability.
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Management of periviable newborns in the Nordic countries
Thor Willy Ruud Hansen and Ola Didrik Saugstad
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00017]
Perinatal and neonatal health care is quite uniform in the Nordic countries in spite of large differences in population densities and transport distances. For the present study data was collected with a questionnaire sent to neonatologists in the five Nordic countries Denmark, Finland, Iceland, Norway, and Sweden. In these countries there are totally approximately 80 level II and 25 level I NICUs. Care of periviable immature infants is strongly centralized with a few exceptions in Norway due to long transport distances. Iceland with one level III NICU only is the only country with national guidelines for management of prematurity, and only Norway has national guidelines for follow-up. In all countries the lower margin of viability is considered as < 23 weeks, although practical handling of these smallest children may vary between countries and within each country. In parts of Sweden proactive management is recommended while other units, for instance in Denmark, practice palliative care at 23 weeks and life support at 24 weeks. Following a consensus conference organized in Norway in 1998 it became common practice to treat babies with gestational age down to 23 weeks, however parental choice and autonomy should be respected. This seems to be in accordance with recent international guidelines. In summary, ELBWI are offered intensive care treatment in all Nordic countries but with some variation between countries concerning rate of referral and degree of centralization of care. Survival rates for these babies are quite high in all the Nordic countries.
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Does data shape moral decision? Or do values shape the data?
John D. Lantos
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00018]
This paper examines the differences between different countries in policies regarding babies born at the borderline of viability. Such differences clearly exist. It is unclear whether they exist, in such an explicit way, for other populations of patients. Differences seem to reflect both the unique cultural milieu of different countries and also the unique moral status of the peri-viable baby. Similar differences exist regarding the moral status of the fetus. Such differences are likely to increase as fetal medicine develops, and the line between intrauterine and extrauterine life becomes less distincts.
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Neonatology In The United States: Where We Are, And Where We Are Going
William Meadow
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00019]
The United States is the largest country in the ‘industrialized world’, and, as such, has dominated the medical literature reporting practices and outcomes of neonatal intensive care. Perhaps surprisingly, very few things about U.S. Neonatology are unique to the U.S. This chapter will attempt an impossible task – summarizing the practice of neonatology in the entire U.S. I will draw parallels to practices of my colleagues around the globe, and point out American idiosyncracies where they arise. I will end with my sense of the likely (at least in the near-term) future developments for neonatology in the U.S.
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The Premature Lottery In The Canadian Grey Zones
Annie Janvier and Prakesh S Shah
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00020]
Canada is a large country with only 34 million inhabitants. Canada has a socialized healthcare system and a prematurity rate between 7 and 8%. Interventions for extremely low gestational age infants (ELGANs) raise ethical concerns in many countries. Unlike the physiologic limit of viability, which is about 22 weeks and is similar around the globe, the borders of the “grey zone” for ELGANs range between 21 to 26 weeks, depending where the baby is born. The borders of the gray zones are fuzzy, elastic and subjective. We will explore variation of practice for ELGANs both around the world and in Canada. We will come to several conclusions 1. Policy statements for ELGANs based uniquely on gestational age are scientifically problematic and should be avoided; 2. Policy statements for ELGANs might reflect the fact that ELGANs are considered to be morally different from older children; 3. Variation of practice (and outcomes) for ELGANs may reflect values more than facts, and facts in turn can influence values; 4. National databases, such as the Canadian Neonatal Network, are invaluable tools in evaluating and studying variation of practices for ELGANs; 5. Physicians can learn from these variations of practice, but this demands humility, curiosity and open mindedness; 6.The increase in preterm birth rates should be seen as an emergency in all countries.
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Coping with the Dilemmas of Extremely Preterm Birth: Outcome or Ethics?
Umberto Simeoni and Dominique Haumont
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00021]
Over treatment in extreme prematurity, is an ongoing debate and often translated as ‘what are the limits of viability?’ The concerns stemming from this issue are the risks of long-term morbidity and mortality. Although many medical specialties are concerned with overtreatment, in neonatology and especially in extreme prematurity, the paradox of the emotional impact of happiness of a new life and fear about worrying outcome issues is absolutely unique. Many discussants have asked for defining therapeutic limits in extreme prematurity. Statistical approaches from epidemiologic outcomes have oversimplified those limits in terms of criteria as simple as gestational age or birth weight. Current scientific, epidemiologic and medical-economic knowledge have demonstrated the complexity of the issue. For example, in recent years, these infants have required intensive care less often than in previous years. Gestational age alone has been shown to be a poor prognostic factor for both mortality and severe morbidity. Recently more complex models have been proposed including more relevant prognostic risk factors like chorioamnionitis, prenatal steroids or gender. Furthermore, the absolute number of preterm infants increases significantly with increasing gestational age. The impact on public health resources of late preterms, who are not concerned by futile treatment issues, is much more important compared to extreme preterm infants. But, the emotional and symbolic aspects of periviability are dramatic and very complex. Ethical and medical dilemmas in decision making around withholding or withdrawing treatment will be strongly influenced by the underlying culture, economic situations of countries and individual spiritual believes of both caregivers and families.
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The Italian debate on the lowest threshold of viability and fetal-neonatal-maternal rights: conflicts between law, case law, religious insights and clinical practice
Mariarosaria Di Tommaso
[FULL-TEXT INQUIRY] [BSP/CPR/E-Pub/00022]
The question of periviability in Italy represents an area of conflict between science, religion and politics. There is an ever widening gap between laws, which are strongly influenced by the Roman Church and the judiciary and the laicism of many Italians, too. From an obstetrical point of view the first contradiction in this field is found in the law that regulates voluntary abortion after the 90th day of pregnancy. An eugenetic abortion is not allowed; fetal malformations can not be an indication for abortion, but only in case its knowledge induces a physical or psychical illness in the mother that can worsen with the continuation of pregnancy end. Fetal intra cardiac injection of potassium chloride is not allowed and although the limit in performing an abortion is represented by the possibility for the fetus of having an autonomous life, if there is any possibility of fetal survival, every effort should be done to save the fetal/neonatal life. From a neonatological point of view the kind of care strategies in extremely preterm infants is underlined by a document produced by the National Ministry of Health released on march 08. The consideration that can be drawn from this document is that the science and conscience of a doctor in protecting fetal and neonatal life, continues to be the only indicators in the choices of which kind of assistance a neonate should receive at the threshold of viability, and that the doctor’s science and conscience is superior to parental opinion.
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