Infant; Program Evaluation; Referral and Consultation; Terminal Care; Human; Descriptive Statistics; Perinatal Care; Prenatal Diagnosis; Retrospective Design; Record Review; Work Experiences; Gestational Age; Perinatal Death; Palliative Care -- In Infancy and Childhood; Treatment Outcomes; Neonatologists; Central Nervous System Diseases; Early Intervention; Infant High Risk
Description
Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.
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It is estimated that between 14.8% and 18% of all youths in North America have a chronic health condition or a special health care condition (eg, impairments, such as musculoskeletal impairments, speech defects, deafness and hearing loss, blindness and visual impairments; and diseases, such as asthma and heart disease) that affects them and their families (1,2). They may have survived life-threatening illnesses that, until recently, had a high mortality rate, or survive longer with improved medical care and technology. It is estimated that up to 98% of children diagnosed with a chronic health condition may now reach the age of 20 years (3,4), depending on the condition. Some may also have physical and mental disabilities resulting from their primary illness. Many have to deal with the psychological consequences of their condition and the continuing involvement of numerous medical and paramedical personnel in their lives. The care and follow-up of many of these adolescents are often fragmented, and relies heavily on subspecialists and therapists who may practice far from their home. Adolescents with chronic health conditions that are less obvious or less serious may not get the support they need from physicians or other adults. This position statement is intended to assist specialists, subspecialists and primary care physicians who provide care to youth with chronic conditions.
2006
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A healthy 42-year-old G10 P7 mother with seven healthy children with the same partner conceived naturally while taking prenatal folic acid supplementation. She was referred to a perinatal assessment team at a tertiary hospital following a 21-week ultrasound showing extensive lumbosacral meningomyelocele and Chiari II malformation. Serial ultrasounds documented progressive polyhydramnios, massive ventriculomegaly, poorly developed mantle, 120° kyphoscoliosis and club feet. The referring family physician and obstetrics, genetics, neonatology, neurosurgery and palliative care were involved throughout the pregnancy. The consultants’ impressions of profound neurological damage led to counselling about options for termination of pregnancy, comfort measures alone, or resuscitative care and re-evaluation after delivery. The parents hoped for a live-born infant and time to hold her while alive. Following extensive discussions with their family physician, they chose a trial of resuscitative care with immediate neonatology assessment. A scheduled Caesarean section under spinal anesthetic, preceded by ultrasound-guided ventriculocentesis to facilitate delivery, was performed at 37 weeks’ gestation. Resuscitation included intubation and administration of intravenous fluid. The neonatologist confirmed a large open lumbosacral meningomyelocele. The baby became increasingly hypoxic despite attempts to optimize ventilation and, in discussion with the parents, the neonatologist discontinued mechanical ventilation while the baby was held in her father’s arms. Death occurred at 2 h of age.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Children who 'grow up' in hospital: Inpatient stays of six months or longer.
Creator
Davies D; Hartfield D; Wren T
Publisher
Paediatrics & Child Health
Date
2014
Description
Abstract: OBJECTIVE: To describe the clinical course of all infants and children hospitalized for six consecutive months (180 days) or longer at a...
2014-12
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
adolescent; Obesity; Body Mass Index; Overweight; Paediatrics; Wound and injuries
Description
OBJECTIVE: To evaluate the relationship between body mass index (BMI) and acute injury in adolescents. METHODS: An analysis of cross-sectional data from the Canadian Community Health Survey (CCHS) Cycle 3.1 collected by Statistics Canada in 2005 was conducted. The CCHS is a population-based survey that collects information pertaining to the Canadian population health status, health care use and health determinants. The CCHS Cycle 3.1 included 132,221 respondents, of whom 12,317 were 12 to 17 years of age. Multivariate logistic regression was used to estimate the odds of injury occurrence by BMI categories (obese, overweight and neither). RESULTS: The association between overweight and obese BMI levels and injury occurrence in the bivariate model was not significant after adjusting for sex, health status, activity levels and socioeconomic status (OR=1.10 [95% CI 0.97 to 1.24] for overweight and OR=1.12 [95% CI 0.92 to 1.37] for obesity). A subanalysis of those with an injury in the past 12 months found an elevated odds of experiencing multiple injuries in the overweight group, after adjusting for age, health status and physical activity level (OR=1.43 [95% CI 1.16 to 1.77]). CONCLUSION: An increased risk of acute injury in obese and overweight adolescents was not observed. However, the subgroup analysis suggested that multiple injuries are relatively frequent in the overweight BMI group.
2010-07
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Adolescents and young adults (AYAs [15 to 29 years of age]) with cancer have a distinct cancer epidemiology, evolving hormonal milieu, maturing development, transitions in autonomy, increasing demands in education, entry into the workplace and family responsibilities. The prevalence of epithelial cancers in AYA patients represents a major shift from the embryonal cancers that predominate in early childhood. Thus, one would expect a specialized expertise to be required in caring for these patients, who typically fall between paediatric and oncology spheres of practice. Complex issues contribute to the lower survival rates noted for AYAs compared with those of younger patients, even with the same cancer. Cooperative group clinical trial participation has been crucial in advancing the excellent outcomes accomplished in paediatric oncology, yet participation by adolescents in clinical trials (either adult or paediatric) is typically low. There is increasing evidence that both appropriate location of care and access to specialists in paediatric or adult oncology contribute to favourable outcomes. Issues specific to AYA patients should be studied rigorously so that evidence-based approaches may be used to reduce waiting times, ensure prompt referral to appropriate centres, increase accrual to clinical trials, foster compliance, provide comprehensive supportive care and promote programs designed to enhance survivorship.
2006
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Palliative Care; Pain; cancer; life-limiting condition; Neurodisability; symptom control
Description
Paediatric palliative care has continued to develop as a philosophy of care and as a practical clinical service to children with life-limiting conditions. More doctors and nurses identify themselves as particularly interested in the subject, and there is a more modest increase in those considering themselves to be ‘specialists’. Where even five years ago even the phrase ‘palliative care’ was unfamiliar to many paediatricians, there is now an expectation that a specialist service should be available locally. This expectation is not yet met in practice; paediatric palliative care ‘networks’ have emerged in many parts of the country but, in general, these link existing services rather than expanding the service infrastructure. There are even areas in which innovative palliative care services to children have been cut or are under threat. This contribution examines the progress—and some of the regress—in children’s palliative care over the last five years, and considers some augurs for the future.
2008
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Measuring in support of early childhood development
Creator
Hertzman C; Clinton J; Lynk A
Publisher
Paediatrics & Child Health
Date
2011
Description
A child’s early experiences and environments have a significant, measurable effect on later life trajectories of health and well-being. Each child’s own world, especially parents and other caregivers, literally sculpts the brain and impacts stress pathways. Effective early childhood interventions exist that can improve adult and societal outcomes. In this statement, the Canadian Paediatric Society calls on federal and provincial/territorial governments to measure and monitor the developmental progress of children in Canada, which can vary widely among communities and demographic groups. The statement explores the objectives for collecting quality information about early child development, its determinants and long-term outcomes. It also examines four approaches to collecting population-based, person-specific and longitudinal data, both in young children and later in life. A key outcome of monitoring development is timely intervention. Linking individual data to the home and community levels is a critical step, so that communities and governments can monitor and take actions that support early child development.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
The newborn infant is prone to clinical motor phenomena that are not epileptic in nature. These include tremors, jitteriness, various forms of myoclonus and brainstem release phenomena. They are frequently misdiagnosed as seizures, resulting in unnecessary investigations and treatment with anticonvulsants, which have potentially harmful side effects. Unfortunately, there is a paucity of literature about many of these phenomena in the newborn, and some of the major textbooks refer to these events as nonepileptic seizures, leading to further confusion for the practitioner. The present paper aims to review these phenomena with special emphasis on differentiating them from epileptic seizures, and offers information on treatment and prognosis wherever possible.
2008
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Health Services Accessibility; Home Health Care; Hospice Care; Intensive Care Units; Multidisciplinary Care Team; Neonatal; Palliative Care; Pediatricians; Perinatal Care; Perinatal Death – Psychosocial Factors; Prenatal Diagnosis; Psychosocial; Support; United Kingdom
Description
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that provides guidance to health professionals. Providing holistic perinatal palliative care depends on close multiprofessional working between the neonatal team and the palliative care professionals who are being integrated into the core neonatal services. Even though most neonates will continue to receive end of life care within the NICU, there are increasing number of families who choose to have end of life care either at home or a hospice. There is a need to develop services across the regions to provide equitable access to excellent clinical care as well as ongoing support to families following loss of a neonate. This short article explores the issues raised in the provision of palliative care in the perinatal period and offers practical guidance for paediatricians in this emerging area.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
OBJECTIVES: To determine which staff behaviours and interventions were helpful to a family who had a child die in the intensive care unit (ICU) and which behaviours could be improved. METHODS: Families whose child died six to 18 months earlier were invited to participate. Families whose child’s death involved a coroner’s inquiry were excluded. Family members were interviewed by a grief counselor, and completed the Grief Experience Inventory Profile and an empirically designed questionnaire. RESULTS: No family refused to participate. All family members (13 families, 24 individuals) reported that they wanted, were offered and had: time to be alone with their child, time to hold the child, chances to discuss their feelings, and an opportunity to cry and express their emotions openly. Tangible mementos of the child were appreciated. Support provided by nursing staff was rated as excellent. Some physicians appeared to be abrupt, cold and unfeeling. Hospital social workers and chaplains, when available, were appreciated. Parents valued access to private space and holding their child, but these options needed to be suggested, as they did not know to ask for them. Some families wanted more information about funeral arrangements; most wanted more timely information about autopsy results and feedback on organ donations. Follow-up contact from the hospital about four weeks after the death was valued. Families saw the study as an opportunity to provide feedback that may help others. CONCLUSIONS: Many acute bereavement interventions need to be initiated by staff because families do not know to request them. Physicians do not always meet individual family’s needs for support. Contact initiated by staff following a death is appreciated.
2003
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
There are increasing numbers of children with medical complexity (CMC) worldwide. CMC make multiple transitions between healthcare settings and providers; frequently receiving multiple medications. While the risk of medication error in children is recognized, data on CMC, perhaps one of the most vulnerable groups, is lacking. OBJECTIVES To explore parental knowledge, perceptions and behaviours around medication safety and to identify and describe recalled medication errors in order to guide future efforts in quality and safety
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Challenging neurological symptoms in paediatric palliative care: An approach to symptom evaluation and management in children with neurological impairment.
Neurological symptoms are very common in children with life-limiting conditions and are challenging in terms of burden of illness. Moreover, neurological symptoms can significantly impact the child's quality of life and contribute to distress among parents, families, caregivers and health care providers. Knowing how to manage and alleviated these symptoms is essential for providing good palliative care. In the present article, the more common neurological symptoms of agitation/irritability, spasticity and dystonia will be reviewed. The aim of the present brief review is to provide a basic approach to both the identification and treatment of these neurological symptoms. A medication table is provided for quick reference. A brief commentary and guidance for the management of pain are also incorporated, with reference to further literature sources.
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OBJECTIVES: To determine whether the recommended nutritional intake of moderately to severely neurologically impaired children is congruent with current growth parameter expectations. METHODS: Observational cross-sectional study at a children's hospice and a tertiary care children's hospital. Medically stable enterally fed children followed by the palliative care team underwent anthropometric assessment and chart review for diagnosis, intake and medications. Intakes, guidelines and recommendations were compared. RESULTS: Intakes were less than recommended. All children were <50th percentile weight-for-age, with many <3rd percentile. Fourteen of 15 were in higher percentiles for absolute and relative body fat. CONCLUSIONS: Recommended dietary intakes were not achieved by these children. Despite this, measures of body fat indicate adequate intake. Low weight values may reflect diagnosis-related growth stunting or decreased muscle mass and bone density from immobility. The Centers for Disease Control and Prevention (Georgia, USA) weight-for-age and body mass index are not suitable measures of adequate intake in this group of children.
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Charting the Territory: Children and families living with progressive life-threatening conditions
Creator
Siden H; Steele R
Publisher
Paediatrics & Child Health
Date
2015
Description
OBJECTIVES: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child’s neurological or rare genetic life-threatening condition on the affected child and his/her parents. METHODS: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, which followed 275 children and 390 parents from 258 families. Parents completed multiple surveys, for themselves and their child. RESULTS: These children had a high symptom burden. The three most common symptoms were pain, sleep problems and feeding difficulties; on average, they had 3.2 symptoms of concern. Despite analgesic use, the frequency of pain episodes and distress were invariant over time, suggesting that treatments were not successful. Parents experienced anxiety, depression and burden; at the same time they also reported positive life change and a high degree of spirituality. The child’s condition resulted in parental changes in living arrangements, work status and hours devoted to caregiving. Nearly two-thirds of families were involved with a palliative care team; the size of the community in which a family resided did not make a significant difference in such involvement. CONCLUSIONS: These families experience many challenges, for the patient, other individual members and the family as a whole. At least some of these challenges may be alleviated by early and organized palliative care. Effective interventions are needed to enhance symptom management for the ill child and to alleviate the various negative impacts on the family.
2015-04
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Ambulatory Care Facilities; Continuity Of Patient Care; Paediatrics; Palliative Care
Description
BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with life-limiting conditions. This clinic was created with input from clinicians, program leaders and families in developing the goals and format. METHOD: The clinic was evaluated with indicators that included program data from palliative care consultations. This information was collected and recorded on a prospective basis. RESULTS: In the first 29 months of operation, 43 clinics were held, 39 individual patients were seen and there were 59 visits. The majority of visits were for pain and symptom management (75%), while 20% were for assessment for the hospice program. The hospice-palliative care team also provided telephone support, videoconference support and inpatient consultations. Patients reported overall satisfaction with their experiences at the clinic. DISCUSSION: A major benefit of this outpatient palliative care clinic is its ability to offer continuity of care for patients and their families. It also serves as a preliminary introduction to palliative care, particularly significant for families who are not yet ready to learn about or engage in the full hospice program.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Paediatric palliative care is a field distinct from adult palliative care, although there are many overlaps in language, approach and philosophy. Several features, however, distinguish paediatric palliative care. The illnesses that affect children are different from those that are most predominant in the adult population. In addition, the role and involvement of the family, while always important in palliative care generally, is heightened in paediatric palliative care. In this new and growing interdisciplinary specialty, paediatric palliative care professionals recognize that children exist within a family system, with individual members making up the components (1). These distinguishing characteristics mean that we cannot simply translate general or adult palliative care research to the paediatric arena. Canada has been a leader in the development of clinical paediatric palliative care, with programs in the major Canadian geographical centres, as well as North America’s first free-standing children’s hospice, Canuck Place Children’s Hospice (Vancouver, British Columbia). At the same time, there is widespread acknowledgement that not enough research has been undertaken within paediatric palliative care to provide an adequate evidence base for practice. To increase research capacity in Canada, in 2004, the Canadian Institutes of Health Research funded a research program entitled ‘Transitions in Pediatric Palliative and End-of-Life Care’ through a New Emerging Team grant.
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Paediatric health care access in community health centres is associated with survival for critically ill children who undergo inter-facility transport: A province-wide observational study
Creator
Tijssen J A; To T; Morrison L J; Alnaji F; MacDonald R D; Cupido C; Lee K S; Parshuram C S
Critical care; Critical illness; Intensive care units (paediatric); Outcome assessment (health care); Referral and consultation; Resource allocation
Description
BACKGROUND: Diverse settlement makes inter-facility transport of critically ill children a necessary part of regionalized health care. There are few studies of outcomes and health care services use of this growing population. METHODS: A retrospective study evaluated the frequency of transports, health care services use, and outcomes of all critically ill children who underwent inter-facility transport to a paediatric intensive care unit (PICU) in Ontario from 2004 to 2012. The primary outcome was PICU mortality. Secondary outcomes were 24-hour and 6-month mortality, PICU and hospital lengths of stay, and use of therapies in the PICU. RESULTS: The 4,074 inter-facility transports were for children aged median (IQR) 1.6 (0.1 to 8.3) years. The rate of transports increased from 15 to 23 per 100,000 children. There were 233 (5.7%) deaths in PICU and an additional 78 deaths (1.9%) by 6 months. Length of stay was median (IQR) 2 (1 to 5) days in PICU and 7 (3 to 14) days in the receiving hospital. Lower PICU mortality was independently associated with prior acute care contact (odds ratio [OR]=0.3, 95% confidence interval [CI]: 0.2 to 0.6) and availability of paediatric expertise at the referral hospital (OR=0.7, 95% CI: 0.5 to 1.0). CONCLUSIONS: We found that in Ontario, children undergoing inter-facility transport to PICUs are increasing in number, consume significant acute care resources, and have a high PICU mortality. Access to paediatric expertise is a potentially modifiable factor that can impact mortality and warrants further evaluation.
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It is now widely endorsed that palliative care (PC) principles should be integrated into the routine care of all children diagnosed with cancer, not only those at end of life (1). However, paediatric health professionals report receiving little training in PC (2), and bereaved parents continue to report suboptimal care throughout the disease course (3,4). It is crucial that all health professionals caring for children with cancer receive comprehensive education about evidence-based PC and support to implement new knowledge. To achieve these goals, we will implement a national ‘roll-out’ of Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics), using a ‘train-the-trainer’ model.
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