Mortality Trends for Pediatric Life-Threatening Conditions

Chavoshi, Negar; Miller, Tanice; Siden, Harold

doi:10.1177/1049909114524476

Cited by 9 publications

(8 citation statements)

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“…A detailed analysis of the mortality experience and palliative needs of infants who have been on the CPCH program has been published elsewhere. 21 Children with cardiac diseases were also underrepresented in the CPCH cohort. During the time of our study, 236 deaths due to congenital heart disease alone occurred in the 0 to 18 population of the province; however, only 23 were cared for by CPCH.…”

Section: E770mentioning

confidence: 99%

“…We estimate that in any given year, we provide care to ∼28% of the eligible population in our catchment area. 21 Any child with an LTC is eligible to be on the program. LTC is defined as either an acute or chronic condition where the likelihood of dying before the age of independent adulthood is high, and where eithercurativeattempt isnotsucceeding or no cure exists.…”

Section: Program Descriptionmentioning

confidence: 99%

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Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

et al. 2014

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WHAT'S KNOWN ON THIS SUBJECT: Palliative care is an increasingly important element of pediatric care for children with noncurable, terminal conditions. Freestanding hospices represent one model of care provision; however, little research on this approach has been conducted. WHAT THIS STUDY ADDS:This report documents the experience of North America' s first freestanding hospice over 15 years to better understand the characteristics of children and families enrolled and to establish baseline information for future studies and program planning. abstract OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children' s Hospice (CPCH) is North America' s first freestanding pediatric hospice. This study describes the characteristics of and services delivered to all children on the CPCH program from 1996 to 2010. METHODS:A retrospective review of all patient medical records CPCH was conducted. Analyses examined trends and correlations between 40 selected data points: linear regression modeling was used to assess trends over time; t tests were used to examine significant associations between independent means; and the Kaplan-Meier method was used to measure survival probabilities. RESULTS:The study cohort included 649 children. The majority of diagnoses belonged to cancers (30%), and diseases of the neuromuscular (20%), and central nervous systems (18%). The majority of deaths occurred among the cancer (45%), central nervous system (15%), and metabolic disease groups (14%). By study end date, 24% of children were still alive, 61% died, and 15% transitioned to adult services (more than half of whom were cognitively competent). On average, 1024 days were spent on the CPCH program (median = 301). The majority of inpatient hospice discharges were for respite (82%); only 7% were for end-of-life care. Location of death was shared between CPCH (61%), hospital (22%), and home (16%).CONCLUSIONS: Diagnostic groups largely determine the nature and magnitude of services used, and our involvement with pediatric lifethreatening conditions is increasing. Reviews of pediatric palliative programs can help evaluate the services needed by the population served. Pediatrics 2014;134:e765-e772 Dr Siden conceptualized and designed the study, guided the analysis, and reviewed and revised the manuscript; Ms Chavoshi drafted the initial manuscript, carried out the analysis, and finalized the manuscript; Ms Harvey was responsible for data review and entry and database management; Ms Parker reentered data and reviewed data for accuracy; Ms Miller reviewed and revised the manuscript and provided content pertaining to program description and budget; and all authors approved the final manuscript as submitted.www.pediatrics.org/cgi

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Section: E770mentioning

confidence: 99%

Section: Program Descriptionmentioning

confidence: 99%

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

et al. 2014

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“…Les systèmes de santé doivent financer et prévoir des services de soins palliatifs en milieu hospitalier, en milieu communautaire et à domicile et garantir l'accès universel aux soins essentiels. Selon les données probantes à jour, de nombreux patients qui pourraient profiter de soins palliatifs spécialisés en pédiatrie ne les reçoivent pas (23)(24)(25)(26). Pour répondre à ce besoin essentiel, les spécialistes en soins palliatifs pédiatriques ont besoin de plus de soutien, et les médecins et les infirmières en soins communautaires ainsi que les dispensateurs de soins à domicile ont besoin de formation et de perfectionnement de leurs compétences.…”

Section: Le Rôle Des Soins Palliatifsunclassified

L’aide médicale à mourir : le point de vue des pédiatres

Davies

2018

Paediatrics &Amp; Child Health

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La décision de la Cour suprême dans Carter c. Canada (2015) a suscité des modifications au Code criminel du Canada, de sorte que « l'aide du médecin pour mourir » est désormais une possibilité légale pour les patients adultes et consentants « affecté[s] de problèmes de santé graves et irrémédiables » qui se caractérisent par des souffrances « persistantes » et « intolérables ». En juin 2016, le projet de loi C-14 était adopté, autorisant la prestation de l'aide médicale à mourir (AMM) aux adultes admissibles dont le décès est « raisonnablement prévisible ». Cette loi fédérale prévoit un rapport sur le statut des « mineurs matures » (actuellement exclus de la loi fédérale), portant sur leur admissibilité potentielle à l' AMM. Ce rapport devrait être présenté au Parlement d'ici décembre 2018. Les médecins et les autres professionnels de la santé ont le privilège et la responsabilité de garantir les meilleures normes de soins aux nouveau-nés, aux enfants et aux adolescents en fin de vie. Parmi leurs obligations de diligence essentielles et en constante évolution, ils doivent aborder chaque situation de fin de vie de manière réfléchie, respectueuse et individuelle, dans le respect des besoins sociaux, culturels et spirituels de chaque patient (et de sa famille). Le présent document de principes décrit le contexte juridique et médical de l' AMM au Canada. On y présente le point de vue de la pédiatrie, issu d'un vaste processus de consultation structuré mené au Canada et ailleurs. Même si les « mineurs matures » sont les seuls jeunes devant faire l'objet d'un examen législatif au Canada, il est capital d'examiner les demandes d' AMM et les attitudes entourant l' AMM à l'égard des mineurs de tout âge, et ce, pour deux grandes raisons : L'AMM ET LA PÉDIATRIE DANS D'AUTRES PAYS Les Pays-Bas et la Belgique sont les deux seuls pays où les lois prévoient l' AMM pour les nourrissons et les enfants. En 1997,

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“…International studies vary in their estimated prevalence rates for pediatric life-threatening conditions. A Canadian study found a prevalence of 2.3 + .011 per 10,000 [16], whilst in England, United Kingdom, estimates are 32 per 10,000 of the population related to the number of children and young people up to 19 years living with a life-limiting condition in 2009/10 [13].…”

Section: Introductionmentioning

confidence: 99%

“Transition from children’s to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison”

et al. 2020

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Background: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory. Methods: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements. Results: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making.

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Mortality Trends for Pediatric Life-Threatening Conditions

Cited by 9 publications

References 20 publications

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

Characteristics of a Pediatric Hospice Palliative Care Program Over 15 Years

L’aide médicale à mourir : le point de vue des pédiatres

“Transition from children’s to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison”

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