Healthcare professionals are frequently asked about the benefits of cannabis for appetite or anorexia-cachexia syndrome. In popular culture, cannabis has a reputation of causing an increased hunger, slang termed "the munchies," so many patients consume this with the hope that it may improve the loss of appetite associated with serious illness such as cancer. There have only been a few randomized, controlled trials studying the controversial question as to if cannabis improves appetite. These studies are small and show no statistically significant benefit for appetite and one small study showed improvement of taste for foods. Due to regulation barriers, the studies have use synthetic products, not the products that represent what is more commonly used in the population, often whole flower smoked, vaporized or oral products. Despite the popularity of cannabis in culture, often touted as a panacea for all maladies, the evidence and education for several adverse effects and potential drug interactions have has yet to catch up with the cultural craze. International cannabis experts in the United States and Australia do not routinely certify patients for medical cannabis off trial for anorexia-cachexia, but one expert in Canada would consider use in selected cancer patients.
Cannabis , Hallucinogens , Neoplasms , Humans , Anorexia/drug therapy , Anorexia/etiology , Cachexia/drug therapy , Cachexia/etiology , Neoplasms/complications
BACKGROUND: Paediatric inflammatory multisystem syndrome (PIMS) is a rare condition temporally associated with SARS-CoV-2 infection. Using national surveillance data, we compare presenting features and outcomes among children hospitalized with PIMS by SARS-CoV-2 linkage, and identify risk factors for intensive care (ICU). METHODS: Cases were reported to the Canadian Paediatric Surveillance Program by a network of >2800 pediatricians between March 2020 and May 2021. Patients with positive versus negative SARS-CoV-2 linkages were compared, with positive linkage defined as any positive molecular or serologic test or close contact with confirmed COVID-19. ICU risk factors were identified with multivariable modified Poisson regression. RESULTS: We identified 406 children hospitalized with PIMS, including 49.8% with positive SARS-CoV-2 linkages, 26.1% with negative linkages, and 24.1% with unknown linkages. The median age was 5.4 years (IQR 2.5-9.8), 60% were male, and 83% had no comorbidities. Compared to cases with negative linkages, children with positive linkages experienced more cardiac involvement (58.8% vs. 37.4%; p < 0.001), gastrointestinal symptoms (88.6% vs. 63.2%; p < 0.001), and shock (60.9% vs. 16.0%; p < 0.001). Children aged ≥6 years and those with positive linkages were more likely to require ICU. CONCLUSIONS: Although rare, 30% of PIMS hospitalizations required ICU or respiratory/hemodynamic support, particularly those with positive SARS-CoV-2 linkages. IMPACT: We describe 406 children hospitalized with paediatric inflammatory multisystem syndrome (PIMS) using nationwide surveillance data, the largest study of PIMS in Canada to date. Our surveillance case definition of PIMS did not require a history of SARS-CoV-2 exposure, and we therefore describe associations of SARS-CoV-2 linkages on clinical features and outcomes of children with PIMS. Children with positive SARS-CoV-2 linkages were older, had more gastrointestinal and cardiac involvement, and hyperinflammatory laboratory picture. Although PIMS is rare, one-third required admission to intensive care, with the greatest risk amongst those aged ≥6 years and those with a SARS-CoV-2 linkage.
COVID-19 , SARS-CoV-2 , Humans , Male , Child , Child, Preschool , Female , COVID-19/epidemiology , COVID-19/therapy , Canada/epidemiology , Systemic Inflammatory Response Syndrome/diagnosis , Systemic Inflammatory Response Syndrome/epidemiology
Cannabis is becoming more popular and more available in the United States. It has been approved for use by multiple states for various conditions and several states now allow recreational cannabis. We explore the structure of cannabis distribution, the process of acquisition, outcomes, and the safety of cannabis in the United States.
Cannabis , Medical Marijuana , Neoplasms , Humans , United States , Neoplasms/drug therapy , Medical Marijuana/therapeutic use
Background: Direct comparisons of paediatric hospitalizations for acute coronavirus disease 2019 (COVID-19) and multisystem inflammatory syndrome in children (MIS-C) can inform health system planning. We describe the absolute and relative hospital burden of acute paediatric COVID-19 and MIS-C in Canada. Methods: This national prospective study was conducted via the Canadian Paediatric Surveillance Program from March 2020-May 2021. Children younger than 18 years old and hospitalized for acute COVID-19 or MIS-C were included in the analysis. Outcomes included supplemental oxygen (low-flow oxygen or high-flow nasal cannula), ventilation (non-invasive or conventional mechanical), vasopressors, paediatric intensive care unit (PICU) admission, or death. Adjusted risk differences (aRD) and 95% confidence intervals (CI) were calculated to identify factors associated with each diagnosis. Results: Overall, we identified 330 children hospitalized for acute COVID-19 (including five deaths) and 208 hospitalized for MIS-C (including zero deaths); PICU admission was required for 49.5% of MIS-C hospitalizations versus 18.2% of acute COVID-19 hospitalizations (aRD 20.3; 95% CI, 9.9-30.8). Resource use differed by age, with children younger than one year hospitalized more often for acute COVID-19 (aRD 43.4% versus MIS-C; 95% CI, 37.7-49.1) and more children 5-11 years hospitalized for MIS-C (aRD 38.9% vs. acute COVID-19; 95% CI, 31.0-46.9). Conclusion: While there were more hospitalizations and deaths from acute paediatric COVID-19, MIS-C cases were more severe, requiring more intensive care and vasopressor support. Our findings suggest that both acute COVID-19 and MIS-C should be considered when assessing the overall burden of severe acute respiratory syndrome coronavirus 2 in hospitalized children.
Background: Children living with chronic comorbid conditions are at increased risk for severe COVID-19, though there is limited evidence regarding the risks associated with specific conditions and which children may benefit from targeted COVID-19 therapies. The objective of this study was to identify factors associated with severe disease among hospitalized children with COVID-19 in Canada. Methods: We conducted a national prospective study on hospitalized children with microbiologically confirmed SARS-CoV-2 infection via the Canadian Paediatric Surveillance Program (CPSP) from April 2020-May 2021. Cases were reported voluntarily by a network of >2800 paediatricians. Hospitalizations were classified as COVID-19-related, incidental infection, or infection control/social admissions. Severe disease (among COVID-19-related hospitalizations only) was defined as disease requiring intensive care, ventilatory or hemodynamic support, select organ system complications, or death. Risk factors for severe disease were identified using multivariable Poisson regression, adjusting for age, sex, concomitant infections, and timing of hospitalization. Findings: We identified 544 children hospitalized with SARS-CoV-2 infection, including 60·7% with COVID-19-related disease and 39·3% with incidental infection or infection control/social admissions. Among COVID-19-related hospitalizations (n=330), the median age was 1·9 years (IQR 0·1-13·3) and 43·0% had chronic comorbid conditions. Severe disease occurred in 29·7% of COVID-19-related hospitalizations (n=98/330 including 60 admitted to intensive care), most frequently among children aged 2-4 years (48·7%) and 12-17 years (41·3%). Comorbid conditions associated with severe disease included pre-existing technology dependence requirements (adjusted risk ratio [aRR] 2·01, 95% confidence interval [CI] 1·37-2·95), body mass index Z-scores ≥3 (aRR 1·90, 95% CI 1·10-3·28), neurologic conditions (e.g. epilepsy and select chromosomal/genetic conditions) (aRR 1·84, 95% CI 1·32-2·57), and pulmonary conditions (e.g. bronchopulmonary dysplasia and uncontrolled asthma) (aRR 1·63, 95% CI 1·12-2·39). Interpretation: While severe outcomes were detected at all ages and among patients with and without comorbidities, neurologic and pulmonary conditions as well as technology dependence were associated with increased risk of severe COVID-19. These findings may help guide vaccination programs and prioritize targeted COVID-19 therapies for children. Funding: Financial support for the CPSP was received from the Public Health Agency of Canada.
OBJECTIVE: To evaluate the clinical features of Canadian adolescents admitted to the intensive care unit (ICU) for medically serious self-harm. METHODS: 2700 Canadian paediatricians were surveyed monthly over two years (January 2017 to December 2018) through the Canadian Paediatric Surveillance Program to ascertain data from eligible cases. RESULTS: Ninety-three cases (73 female; age 15.2 ± 1.5) met the case definition. Four provinces reported the majority of cases: Quebec (n = 27), Ontario (n = 26), Alberta (n = 21), and British Columbia (n = 8). There were 10 deaths, 9 by hanging. Overdose and hanging were the most frequently reported methods of self-harm (74.2% and 19.4%, respectively). Overdose was more common in females (80.8% females vs. 50% males; χ2 = 7.8 (1), p = .005), whereas hanging was more common in males (35% males vs. 15.1% females, χ2 = 3.9 (1), p = .04). More females than males had a past psychiatric diagnosis (79% vs. 58%; χ2 = 4.1 (1), p = .06), a previous suicide attempt (55.9% vs. 29.4%, χ2 = 3.8 (1), p = .05), and prior use of mental health service (69.7% vs. 27.8%, χ2 = 10.4 (1), p = .001). Family conflict was the most commonly identified precipitating factor (43%) of self-harm. CONCLUSIONS: Among Canadian adolescents admitted to the ICU with medically serious self-harm, females demonstrate a higher rate of suicide attempts and prior mental health care engagement, whereas males are more likely to die by suicide. These findings are consistent with data from other adolescent samples, as well as data from working-age and older adults. Therefore, a sex-specific approach to suicide prevention is warranted as part of a national suicide prevention strategy; family conflict may be a specific target for suicide prevention interventions among adolescents.
Drug Overdose , Mental Disorders , Mental Health Services , Self-Injurious Behavior , Adolescent , Aged , Alberta , Child , Female , Humans , Male , Mental Disorders/epidemiology , Self-Injurious Behavior/epidemiology , Suicide, Attempted/prevention & control
CONTEXTE: Les facteurs de risque de complications graves de l'infection par le SRAS-CoV-2 n'ont pas été bien établis chez les enfants. Nous avons voulu décrire les hospitalisations pédiatriques associées au SRAS-CoV-2 au Canada et identifier les facteurs de risque de maladie grave. MÉTHODES: Nous avons procédé à une étude prospective nationale en utilisant l'infrastructure du Programme canadien de surveillance pédiatrique (PCSP). Les hospitalisations d'enfants ayant contracté une infection par le SRAS-CoV-2 confirmée en laboratoire de microbiologie ont été rapportées du 8 avril au 31 décembre 2020 au moyen de questionnaires hebdomadaires en ligne distribués au réseau du PCSP, qui compte plus de 2800 pédiatres. Nous avons catégorisé les hospitalisations comme suit : liées à la COVID-19, infections découvertes fortuitement, ou hospitalisations pour des raisons sociales ou de contrôle des infections, et dégagé les facteurs de risque associés à la gravité de la maladie chez les patients hospitalisés. RÉSULTATS: Sur les 264 hospitalisations d'enfants ayant contracté le SRAS-CoV-2 au cours de la période de l'étude de 9 mois, 150 (56,8 %) ont été associées à la COVID-19 et 100 (37,9 %) étaient des cas découverts fortuitement (admission pour d'autres raisons et découverte fortuite du SRAS-CoV-2 par dépistage positif). Les nourrissons (37,3 %) et les adolescents (29,6 %) représentaient la majorité des cas. Parmi les hospitalisations liées à la COVID-19, 52 patients (34,7 %) étaient atteints d'une forme grave de la maladie, dont 42 (28,0 % des cas liés à la COVID-19) ont eu besoin d'une forme d'assistance respiratoire ou hémodynamique, et 59 (39,3 %) présentaient au moins 1 comorbidité sous-jacente. Les enfants atteints d'obésité, de maladies neurologiques chroniques ou de maladies pulmonaires chroniques, à l'exclusion de l'asthme, étaient plus susceptibles de présenter une forme grave ou critique de la COVID-19. INTERPRÉTATION: Parmi les enfants hospitalisés au Canada chez lesquels on a diagnostiqué une infection par le SRAS-CoV-2 au début de la pandémie de COVID-19, la découverte fortuite du SRAS-CoV-2 a été fréquente. Chez les enfants hospitalisés pour une COVID-19 aiguë, l'obésité et les comorbidités neurologiques et respiratoires ont été associées à une gravité accrue.
COVID-19 , SARS-CoV-2 , Antibodies, Viral , Canada , Child , Hospitalization , Humans
BACKGROUND: Risk factors for severe outcomes of SARS-CoV-2 infection are not well established in children. We sought to describe pediatric hospital admissions associated with SARS-CoV-2 infection in Canada and identify risk factors for more severe disease. METHODS: We conducted a national prospective study using the infrastructure of the Canadian Paediatric Surveillance Program (CPSP). Cases involving children who were admitted to hospital with microbiologically confirmed SARS-CoV-2 infection were reported from Apr. 8 to Dec. 31 2020, through weekly online questionnaires distributed to the CPSP network of more than 2800 pediatricians. We categorized hospital admissions as related to COVID-19, incidental, or for social or infection control reasons and determined risk factors for disease severity in hospital. RESULTS: Among 264 hospital admissions involving children with SARS-CoV-2 infection during the 9-month study period, 150 (56.8%) admissions were related to COVID-19 and 100 (37.9%) were incidental infections (admissions for other reasons and found to be positive for SARS-CoV-2 on screening). Infants (37.3%) and adolescents (29.6%) represented most cases. Among hospital admissions related to COVID-19, 52 (34.7%) had critical disease, 42 (28.0%) of whom required any form of respiratory or hemodynamic support, and 59 (39.3%) had at least 1 underlying comorbidity. Children with obesity, chronic neurologic conditions or chronic lung disease other than asthma were more likely to have severe or critical COVID-19. INTERPRETATION: Among children who were admitted to hospital with SARS-CoV-2 infection in Canada during the early COVID-19 pandemic period, incidental SARS-CoV-2 infection was common. In children admitted with acute COVID-19, obesity and neurologic and respiratory comorbidities were associated with more severe disease.
COVID-19/epidemiology , Hospitalization , Severity of Illness Index , Acute Disease , Adolescent , COVID-19/diagnosis , COVID-19/etiology , COVID-19/therapy , COVID-19 Testing , Canada/epidemiology , Child , Child, Preschool , Comorbidity , Female , Humans , Incidental Findings , Infant , Infant, Newborn , Male , Prospective Studies , Public Health Surveillance , Risk Factors
BACKGROUND: Globally, medical cannabis legalization has increased in recent years and medical cannabis is commonly used to treat chronic pain. However, there are few randomized control trials studying medical cannabis indicating expert guidance on how to dose and administer medical cannabis safely and effectively is needed. METHODS: Using a multistage modified Delphi process, twenty global experts across nine countries developed consensus-based recommendations on how to dose and administer medical cannabis in patients with chronic pain. RESULTS: There was consensus that medical cannabis may be considered for patients experiencing neuropathic, inflammatory, nociplastic, and mixed pain. Three treatment protocols were developed. A routine protocol where the clinician initiates the patient on a CBD-predominant variety at a dose of 5 mg CBD twice daily and titrates the CBD-predominant dose by 10 mg every 2 to 3 days until the patient reaches their goals, or up to 40 mg/day. At a CBD-predominant dose of 40 mg/day, clinicians may consider adding THC at 2.5 mg and titrate by 2.5 mg every 2 to 7 days until a maximum daily dose of 40 mg/day of THC. A conservative protocol where the clinician initiates the patient on a CBD-predominant variety at a dose of 5 mg once daily and titrates the CBD-predominant dose by 10 mg every 2 to 3 days until the patient reaches their goals, or up to 40 mg/day. At a CBD-predominant dose of 40 mg/day, clinicians may consider adding THC at 1 mg/day and titrate by 1 mg every 7 days until a maximum daily dose of 40 mg/day of THC. A rapid protocol where the clinician initiates the patient on a balanced THC:CBD variety at 2.5-5 mg of each cannabinoid once or twice daily and titrates by 2.5-5 mg of each cannabinoid every 2 to 3 days until the patient reaches his/her goals or to a maximum THC dose of 40 mg/day. CONCLUSIONS: In summary, using a modified Delphi process, expert consensus-based recommendations were developed on how to dose and administer medical cannabis for the treatment of patients with chronic pain.
AIMS: Opioid misuse and overuse have contributed to a widespread overdose crisis and many patients and physicians are considering medical cannabis to support opioid tapering and chronic pain control. Using a five-step modified Delphi process, we aimed to develop consensus-based recommendations on: 1) when and how to safely initiate and titrate cannabinoids in the presence of opioids, 2) when and how to safely taper opioids in the presence of cannabinoids and 3) how to monitor patients and evaluate outcomes when treating with opioids and cannabinoids. RESULTS: In patients with chronic pain taking opioids not reaching treatment goals, there was consensus that cannabinoids may be considered for patients experiencing or displaying opioid-related complications, despite psychological or physical interventions. There was consensus observed to initiate with a cannabidiol (CBD)-predominant oral extract in the daytime and consider adding tetrahydrocannabinol (THC). When adding THC, start with 0.5-3 mg, and increase by 1-2 mg once or twice weekly up to 30-40 mg/day. Initiate opioid tapering when the patient reports a minor/major improvement in function, seeks less as-needed medication to control pain and/or the cannabis dose has been optimised. The opioid tapering schedule may be 5%-10% of the morphine equivalent dose (MED) every 1 to 4 weeks. Clinical success could be defined by an improvement in function/quality of life, a ≥30% reduction in pain intensity, a ≥25% reduction in opioid dose, a reduction in opioid dose to <90 mg MED and/or reduction in opioid-related adverse events. CONCLUSIONS: This five-stage modified Delphi process led to the development of consensus-based recommendations surrounding the safe introduction and titration of cannabinoids in concert with tapering opioids.
Cannabinoids , Chronic Pain , Analgesics, Opioid , Chronic Pain/drug therapy , Consensus , Humans , Quality of Life
Cannabinoids are a diverse class of chemical compounds that are increasingly recognized as potential therapeutic options for a range of conditions. While many studies and reviews of cannabinoids focus on efficacy, safety is much less well reported. Overall assessment of the safety of cannabinoid-based medicines is confounded by confusion with recreational cannabis use as well as different study designs, indications, dosing, and administration methods. However, clinical studies in registered products are increasingly available, and this article aims to discuss and clarify what is known regarding the safety profiles of cannabinoid-based medicines, focusing on the medical and clinical safety evidence and identifying areas for future research. The two most well-studied cannabinoids are Δ9-tetrahydrocannabinol (THC), or its synthetic variants (dronabinol, nabilone), and cannabidiol (CBD). Across diverse indications, dizziness and fatigue are generally the most common adverse events experienced by patients receiving THC or combined THC and CBD. Patients receiving THC may experience adverse cognitive effects and impairment in psychomotor skills, with implications for driving and some occupations, while CBD may help to lower the psychotropic effects of THC when used in combination. Studies on dependency and addiction in a medical context are limited, but have shown inconsistent findings regarding misuse potential. Generally, the recommended route of administration is oral ingestion, as smoking medicinal cannabinoid products potentially releases mutagenic and carcinogenic by-products. There are several potential drug-drug interactions and contraindications for cannabinoid-based medicines, which physicians should account for when making prescribing decisions. The available evidence shows that, as with any other class of pharmaceuticals, cannabinoid-based medicines are associated with safety risks which should be assessed in the context of potential therapeutic benefits. Each patient should be assessed on an individual basis and physicians must rely on informed, evidence-based decision-making when determining whether a cannabinoid-based medicine could be an appropriate treatment option.
OBJECTIVE: Parental accompaniment during transport is considered a core quality metrics in pediatric transport and a key measure of family-centered care in this setting. However, children's opinions on this topic have never been sought. The aim of this study was to evaluate the opinion of different actors of a specialized pediatric transport system on parental presence during transport. METHODS: This was a questionnaire-based descriptive study. Health care professionals qualified to be part of our pediatric transport team, and parents of hospitalized children completed self-administered surveys. Hospitalized children from 5 to 17 years of age were interviewed with a short verbal semistructured questionnaire using sentence completion. RESULTS: Ninety-three professionals, 65 parents, and 25 children completed the questionnaires between February and August 2018. The majority of children (84%) thought that it would be important to be accompanied by their parent if they needed interfacility transport. All of the parents and 79% of health care professionals thought that parents should have the possibility to be present with their children during interfacility transport. CONCLUSION: All of the parents and the majority of health care providers and children interviewed think that parents should be able to be present with their child during interfacility transport.
Critical Care , Health Personnel/psychology , Parents/psychology , Patient Transfer , Transportation of Patients , Adolescent , Child , Child, Preschool , Female , Humans , Male , Surveys and Questionnaires
Medical cannabis, or cannabinoid-based products, continues to grow in popularity globally, driving the evolution of regulatory access frameworks; cancer patients and caregivers often rely on guidance from their physicians regarding cannabinoid-based treatments. But the majority of healthcare practitioners still feel unprepared and insufficiently informed to make reasonable, evidence-based recommendations about medical cannabis. More than 30 countries worldwide have now legalized access to medical cannabis; yet various nations still face arduous regulatory challenges to fulfill the needs of patients, healthcare practitioners, and other medical stakeholders. This has affected the deployment of comprehensive medical cannabis access programs adapted to cultural and social realities. With a 20-year history of legal medical cannabis access and nearly 400,000 registered patients under its federal access program, Canada serves as a model for countries which are developing their regulatory frameworks. The Canadian clinical experience in cannabinoid-based treatments is also a valuable source of lessons for healthcare professionals who wish to better understand the current evidence examining medical cannabis for oncology patients.
Medical Marijuana/administration & dosage , Neoplasms/drug therapy , Palliative Care/methods , Canada , Drug and Narcotic Control/legislation & jurisprudence , Emotions , Government Regulation , Humans , Neoplasms/psychology
OBJECTIVE: The goal of this review is to present online social support interventions described in recent scientific literature, in order to (i) guide organizations wishing to develop such an intervention or to improve an existing program, and (ii) to identify future research directions and recommendations for practitioners. METHODS AND RESULTS: 59 peer-reviewed articles presenting online social support interventions (2006-2016) were analyzed by using a thematic grid focusing on theoretical perspectives on social support, the online platforms used and their functionalities, the process of intervention development and evaluation, the modalities of participation and the facilitation methods, the documented impacts of interventions, and finally future research directions and recommendations for practitioners. A narrative methodology was used to identify challenges in intervention development and implementation, in order to provide guidance to organizations who want to develop or improve their online social support services. CONCLUSIONS: Several research directions and recommendations for the development of online social support interventions are suggested, including the need to develop theoretical models of online social support and enrich traditional models of social support, the need to understand the benefits associated with different levels of participation, the importance of needs assessment in the development of interventions, and the contribution of qualitative methods to the evaluation of interventions.
Health Promotion/methods , Internet , Social Networking , Social Support , Humans , Motivation , Research/trends , Self-Help Groups
On 1 March 2018, a 14-year-old girl was found lifeless in a stream behind her high school after having consumed FCKDUP-a beverage containing 11.9% alcohol and sold in 568 mL cans-during her lunch hour. Following her death, the Canadian government took actions at ministerial and parliamentary levels by seeking experts' advice to better regulate highly sweetened alcoholic beverages, otherwise referred to as 'alcopops'. We suggest that the Canadian government uses the work surrounding the alcopop tragedy as an opportunity to make significant amendments and revisions of federal alcohol regulations.
Alcohol Drinking/adverse effects , Alcohol Drinking/legislation & jurisprudence , Alcoholic Beverages/poisoning , Adolescent , Adolescent Behavior , Canada , Female , Humans , Risk-Taking
Pain and symptom control challenges are common in palliative care, and the search for other therapeutic strategies is ongoing. Unfortunately, patients and their caregivers are receiving little information or support from healthcare providers regarding the increasingly popular cannabinoid-based medicines (CBM). Clinicians, meanwhile, feel understandably perplexed by the discrepancy between the available evidence and the rapid interest in which patients and their families have demonstrated for CBM. There is an urgent need to address the many challenges that are delaying the appropriate integration of CBM into clinical practice, notwithstanding the obvious need for a solid general knowledge of pharmacology, mechanism of action and available clinical evidence supporting its use. The authors will address these challenges and provide practical recommendations regarding patient assessment for the use of CBM. The authors will also make suggestions regarding patient expectations in order to define clear objectives, review the necessary precautions prior to initiating treatment, aid in selecting the appropriate strain and route of administration as well as establishing proper titration and monitoring protocols. The authors will also discuss the lesser known but potentially therapeutic psychoactive effects of cannabis. As this class of therapeutic agents are likely to play a major role in palliative medicine in the near future, clinicians would benefit from familiarizing themselves with CBM and we can expect that patients and their caregivers will appreciate receiving support in their search for safe and effective therapeutic alternatives.
Cannabinoids/therapeutic use , Pain, Intractable/prevention & control , Hospice and Palliative Care Nursing , Humans , Pain, Intractable/psychology , Palliative Care , Quality of Life
BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. METHODS: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs. RESULTS: All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days. INTERPRETATION: Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.
OBJECTIVES: To apply quality indicators for paediatric palliative care and evaluate performance in one service provision area. METHODS: After institutional review board approval, medical records were abstracted for well-defined and measurable quality indicators for children with chronic complex conditions (CCCs) between January 2006 and December 2011 (n=50) at a university medical centre. RESULTS: Of the 50 children with a CCC (mean age 64 months, 48% female), 39 (78%) died in hospital, 11 (22%) died at home and 13 (26%) were <1 month of age. In the final month of their life, 10 patients (20%) required an unplanned visit to the emergency department and seven (14%) were admitted. Only four patients (8%) were admitted for >14 days in their final month of life. Goals of care were addressed in a timely manner 60% of the time. An invasive procedure was performed in the final month of life in 27 (44%) patients. Bereavement follow-up was offered to 25 (50%) families. A palliative care consultant was involved with 17 (34%) patients. Palliative care was associated with less frequent invasive procedures in the final month of life and more frequent documentation of the preferred place of death. CONCLUSION: Performance on these particular quality indicators was unsatisfactory across a diverse group of children with CCCs, indicating important opportunities for improvement. Methods used to improve the quality of other aspects of paediatric care, including emphasis on efficient work systems, practical tools and interdisciplinary teamwork, should be used for ensuring delivery of high-quality palliative care.
OBJECTIFS: Mettre en application des indicateurs de qualité en soins palliatifs pédiatriques et en évaluer l'exécution dans une région de prestation des services. MÉTHODOLOGIE: Après avoir obtenu l'approbation du conseil de révision de l'établissement, les chercheurs ont résumé les dossiers médicaux d'un centre de santé universitaire de janvier 2006 à décembre 2011. Ils visaient ainsi établir des indicateurs de qualité bien définis et mesurables auprès d'enfants ayant des problèmes de santé complexes et chroniques (PSCC; n=50). RÉSULTATS: Sur les 50 enfants ayant des PSCC (âge moyen de 64 mois, 48 % de filles), 39 (78 %) sont décédés à l'hôpital, 11 (22 %) sont décédés à la maison et 13 (26 %) avaient moins d'un mois. Au cours du dernier mois de leur vie, dix patients (20 %) ont dû se rendre à la salle d'urgence sans l'avoir planifié et sept (14 %) ont été hospitalisés. Seulement quatre patients (8 %) ont été hospitalisés plus de 14 jours pendant le dernier mois de leur vie. Dans 60 % des cas, les objectifs des soins ont été abordés dans un délai convenable. Au cours du dernier mois de leur vie, 27 patients (44 %) ont subi une intervention invasive. Par ailleurs, 25 familles (50 %) se sont fait offrir un suivi du deuil, et un consultant en soins palliatifs est intervenu auprès de 17 patients (34 %). Les soins palliatifs favorisaient la diminution du nombre d'interventions invasives pendant le dernier mois de vie et l'augmentation de la consignation du lieu privilégié pour mourir. CONCLUSION: L'exécution de ces indicateurs de qualité était insatisfaisante dans un groupe diversifié de patients ayant des PSCC, ce qui est indicateur d'importantes possibilités d'amélioration. Il faudrait recourir aux méthodes utilisées pour améliorer la qualité d'autres aspects des soins pédiatriques, en s'attardant à des systèmes de travail, des outils pratiques et un travail d'équipe interdisciplinaire efficaces, pour assurer la prestation de soins palliatifs de qualité.
