The PedPalASCNET team has published extensively nationally and internationally about pediatric palliative care.
The following list of publications are comprised of articles in journals and book chapters written and published by the PedPalASCNET team. Some of the articles are available for free while others are subscription based. Free articles will be indicated as such.
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↡↡ Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study
Journal Information: (2017). Journal of Pain Research
Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the “Charting the Territory” study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.
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↡↡ The Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada
Journal Information: (2017). Journal of Palliative Medicine.
Background: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown.
Objective: To determine the validity of using such data to identify the involvement of specialized pediatric PC teams among children with cancer.
Design: Retrospective cohort.
Subjects: Ontario children with cancer who died between 2000 and 2012, received care through a pediatric institution with a specialized PC team and a clinical PC database.
Measurements: All patients in the clinical databases were linked to population-based health services administrative databases. Six algorithms were created to indicate the use of formal pediatric PC teams based on the record type (physician billings vs. inpatient records vs. both) and number of eligible codes required (≥1 vs. ≥2). Each was validated against the pediatric PC clinical databases.
Results: The cohort comprised 572 children; 243 were in the clinical databases. Algorithms using only inpatient records had high specificity (80%–95%) but poor sensitivity (21%–56%). Including physician billings increased sensitivity but lowered specificity. The algorithm with overall best performance required ≥2 physician billing or inpatient diagnosis codes indicating PC [sensitivity 0.79 (95% CI 0.73–0.84), specificity 0.58 (95% CI 0.53–0.64)].
Conclusions: Health administrative data identifies involvement of specialized pediatric PC teams with good sensitivity but low specificity. Studies using such data alone to compare patients receiving and not receiving specialized pediatric PC are at significant risk of misclassification and potential bias. Population-based PC databases should be established to conduct rigorous population-based PC research.
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↡↡ Siblings’ Voices: A Prospective Investigation of Experiences with a Dying Child
Journal Information: (2017). Death Studies
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive methodology to understand siblings’ perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience.
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↡↡ Children’s End-of-Life Health Care Use and Cost
Journal Information: (2017). Pediatrics.
BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health care use and costs over the last year of life for children aged 1 month to 19 years who died in Ontario, Canada.
METHODS: We conducted a population-based retrospective cohort study using administrative databases to determine the characteristics of and health care costs by age group and cause of death over a 3-year period from 2010 to 2013.
RESULTS: In our cohort of 1620 children, 41.6% died of a chronic disease with wide variation across age groups. The mean health care cost over the last year of life was $78 332 (Canadian) with a median of $18 450, reflecting the impact of high-cost decedents. The mean costs for children with chronic or perinatal/congenital illnesses nearly tripled over the last 4 months of life. The majority of costs (67.0%) were incurred in acute care settings, with 88.0% of children with a perinatal/congenital illness and 79.7% with a chronic illness dying in acute care. Only 33.4% of children received home care in the last year of life.
CONCLUSIONS: Children in Ontario receive the majority of their end-of-life care in acute care settings at a high cost to the health care system. Initiatives to optimize care should focus on early discussion of the goals of care and assessment of whether the care provided fits with these goals.
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