Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study.

BACKGROUND: Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type, socioeconomic status, and distance that the child lives from a tertiary hospital. We examined: 1) the prevalence of indicators of high intensity end-of-life care (e.g., hospital stays, intensive care unit [ICU] stays, death in ICU, use of cardiopulmonary resuscitation [CPR], use of mechanical ventilation) and 2) the association between demographic and diagnostic factors and each indicator for children with any life-threatening condition in Canada. METHODS: We conducted a population-based retrospective cohort study using linked health administrative data to examine care provided in the last 14, 30, and 90 days of life to children who died between 3 months and 19 years of age from January 1, 2008 to December 31, 2014 from any underlying life-threatening medical condition. Logistic regression was used to model the association between demographic and diagnostic variables and each indicator of high intensity end-of-life care except number of hospital days where negative binomial regression was used. RESULTS: Across 2435 child decedents, the most common diagnoses included neurology (51.1%), oncology (38.0%), and congenital illness (35.9%), with 50.9% of children having diagnoses in three or more categories. In the last 30 days of life, 42.5% (n = 1035) of the children had an ICU stay and 36.1% (n = 880) died in ICU. Children with cancer had lower odds of an ICU stay (OR = 0.47; 95% CI = 0.36-0.62) and ICU death (OR = 0.37; 95%CI = 0.28-0.50) than children with any other diagnoses. Children with 3 or more diagnoses (vs. 1 diagnosis) had higher odds of > 1 hospital stay in the last 30 days of life (OR = 2.08; 95%CI = 1.29-3.35). Living > 400 km (vs < 50 km) from a tertiary pediatric hospital was associated with higher odds of multiple hospitalizations (OR = 2.09; 95%CI = 1.33-3.33). CONCLUSION: High intensity end of life care is prevalent in children who die from life threatening conditions, particularly those with a non-cancer diagnosis. Further research is needed to understand and identify opportunities to enhance care across disease groups.

Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability.

BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term "Pain and Irritability of Unknown Origin (PIUO)" is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication. METHODS: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway. RESULTS: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission. CONCLUSION: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.

Use of the interRAI PEDS HC in children receiving home care in Ontario, Canada.

BACKGROUND: There is no standard assessment tool for pediatric home care recipients in Canada, limiting the availability of comparable, population-based data. The objective of this study was to describe pediatric home care recipients who were part of a pilot implementation of the interRAI Pediatric Home Care Assessment Form (PEDS-HC) among medically complex children referred to home care agencies in three regions in Ontario, Canada. METHODS: All 14 agencies providing home care to children in Ontario were invited to participate in the pilot project, and 9 participated in an education session. Three of these agencies used the PEDS-HC during the pilot implementation between February 2018 and March 2020. We used de-identified data to describe the demographics, home care needs, and diagnoses of pediatric home care recipients. RESULTS: The sample of 474 assessments was predominantly male (60.34%), with an average age at assessment of 12.36 years (SD 4.56). Most (78.48%) reported English as their primary language. Most children assessed had between two and eight medical diagnoses. Diagnoses reported varied: gastrointestinal, musculoskeletal, respiratory and neurological conditions were most common. The prevalence of urinary incontinence (40.1%) and bowel incontinence (70.9%) were high. Over 60% of children were rarely or only sometimes understood. A majority of children had adequate hearing (83.5%) and vision (68.6%). Extensive services were being provided in 10% of children assessed. Most children received care both at school and at home (70.89%), with 20.89% receiving home care only. CONCLUSIONS: The PEDS-HC provides a detailed, standardised descriptive profile of medically complex children receiving home care. Expanding use of PEDS-HC would promote consistency in care planning and delivery on the patient level, enable cross-jurisdictional comparisons, and inform utilization tracking and health care funding decisions on the organization and provincial levels.

The use of natural health products by paediatric patients in respite care.

OBJECTIVES: To determine the use and potential interactions of natural health products (NHPs) with conventional medications in children with life-limiting illnesses. METHODS: The present study was a retrospective medical record review of palliative care patients <18 years of age who were admitted for respite care to a Canadian paediatric hospice between January 1, 2008 and December 31, 2013. The NHPs were identified according to Health Canada's inclusion criteria. RESULTS: A total of 106 children were included in the present study. Eighty-two (77.4%) had used one or more NHPs: 60 (56%) used vitamins and minerals; 45 (42.5%) used other products including probiotics, omega-3, organic acids and essential fatty acids; 34 (32.1%) used everyday consumer products; 12 (11.3%) used herb or plant-based remedies; and one (0.9%) used homeopathic remedies. Thirty-nine potential NHP-medication and 10 potential NHP-NHP interactions were identified. A considerable number of patients (n=54) used at least one medication and NHP, or two NHPs with potential interactions. The most common type of interaction was pharmacokinetic: decreasing blood concentrations of the medication, NHP or both (43.9% of NHP users); and enhancing the blood concentration of an NHP for NHP-NHP interactions (22% of NHP users). CONCLUSION: A high proportion of patients in respite care use NHPs. Most used NHPs and medications that have potential interactions, although there were no adverse clinical manifestations in the present study. It is important to educate health care professionals about NHPs, the evidence available and lack thereof. This could reduce the most serious interactions and improve the alliance between parents and health care providers to balance the potential risks and benefits of NHPs.

OBJECTIFS: Déterminer l'utilisation et les interactions potentielles des produits de santé naturels (PSN) avec la médication habituelle chez des enfants ayant une maladie limitant l'espérance de vie. MÉTHODOLOGIE: La présente analyse rétrospective de patients en soins palliatifs de moins de 18 ans admis en soins de répit dans un centre canadien de soins palliatifs en pédiatrie s'étalait du 1er janvier 2008 au 31 décembre 2013. Les PSN ont été établis d'après les critères d'inclusion de Santé Canada. RÉSULTATS: Au total, 106 enfants ont fait partie de la présente étude. Quatre-vingt-deux (77,4 %) ont utilisé au moins un PSN : 60 (56 %), des vitamines et des minéraux, 45 (42,5 %), d'autres produits y compris des probiotiques, des acides gras oméga 3, des acides organiques et des acides gras essentiels, 34 (32,1 %), des produits de consommation courante, 12 (11,3 %), des remèdes à base d'herbes ou de plantes et un (0,9 %), des remèdes homéopathiques. Trente-neuf interactions potentielles entre des PSN et des médicaments et dix interactions potentielles entre des PSN et des PSN ont été recensées. Un nombre considérable de patients (n=54) a utilisé au moins un médicament et un PSN ou deux PSN ayant des interactions potentielles. Le principal type d'interaction était d'ordre pharmacocinétique : réduire les concentrations du médicament, du PSN ou des deux dans le sang (43,9 % d'utilisateurs de PSN) et accroître la concentration sanguine d'un PSN en cas d'interactions entre deux PSN (22 % des utilisateurs de PSN). CONCLUSION: Une forte proportion de patients en soins de répit utilisait des PSN. La plupart des enfants en soins de répit utilisait des PSN et des médicaments susceptibles d'interagir les uns avec les autres, même si la présente étude ne révélait pas de manifestations cliniques indésirables. Il est important d'informer les professionnels de la santé en matière de PSN, des données probantes disponibles ou de l'absence de telles données. Ces mesures pourraient réduire les interactions les plus graves et améliorer l'alliance entre les parents et les dispensateurs de soins pour équilibrer les risques et avantages potentiels des PSN.

Interventions for Grieving and Bereaved Informal Caregivers: A Scoping Review of the Canadian Literature.

Background: The palliative approach to care is playing a larger role in the healthcare of older adults in Canada. Within (hospice) palliative care, informal caregivers play a crucial role as part of the interdisciplinary care team. Ensuring high quality palliative care includes providing effective grief and bereavement supports for them. Objective: This study aimed to identify current interventions addressing the grief and bereavement experiences of informal caregivers of geriatric patients in the Canadian (hospice) palliative/end-of-life care realm. Methods: A scoping review was undertaken using Arksey and O'Malley's framework. Seven electronic health and social science databases were searched. In addition, several stakeholder organizations' websites were reviewed to identify grey literature sources. Interventions that took place in Canada, were in English, and explored grief and bereavement supports for informal caregivers in an adult/geriatric (hospice) palliative care setting were included. After full text review, data were extracted and charted. Major themes were established following thematic content analysis. Results: Within a total of 18 sources, three themes were identified: (1) Classification of intervention, (2) Format of intervention, and (3) Intervention target. Method of delivery and type of intervention for grief and bereavement supports were aligned with the international literature. There is a need for large-scale evaluations of interventions and informal caregivers should be engaged in this process. Practitioners should be encouraged to direct bereavement interventions toward grieving caregivers, and to collaborate with them to improve access to these interventions. Policy makers should provide additional funding for grief interventions for informal caregivers. Conclusions: It is important to better understand the needs of informal caregivers experiencing grief and bereavement. Interdisciplinary collaborations will be necessary to develop, evaluate, and scale future interventions.

Palliative care consultation in pediatric oncology.

PURPOSE: Pediatric oncology patients benefit from the involvement of palliative care. This study examined the timing of palliative care consultation. METHODS: A retrospective chart review was performed on all children from the Children's Hospital of Eastern Ontario with a diagnosis of malignancy. RESULTS: Since 2006, 50 children with cancer were referred to palliative care. The mean time of referral after diagnosis was 461 days, with 8(16%) referred within 30 days of diagnosis, 13(26%) before a relapse occurred, 20(40%) after the first relapse, and 9(18%) after ≥2 relapses. Of the 40 patients referred to palliative care who died, 28% died at home, 30% in hospital, and 43% in hospice. Of the 49 oncology patients who died during the study period, 88% received a palliative care consult prior to death. CONCLUSIONS: The majority of children in this study who died from cancer were referred to palliative care. Oncologists should strive to refer patients early in their disease.

Nutritional differences in neurologically impaired children.

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.

OBJECTIFS: Déterminer si l'apport nutritionnel recommandé pour les enfants ayant une atteinte neurologique modérée à grave est conforme aux attentes actuelles en matière de paramètres de croissance. MÉTHODOLOGIE: Étude d'observation transversale dans un établissement de soins palliatifs pour enfants et un hôpital de soins tertiaires pour enfants. Les chercheurs ont procédé à l'évaluation anthropométrique et à l'analyse de dossiers d'enfants suivis par une équipe de soins palliatifs, nourris par voie entérique et stables sur le plan médical afin de connaître leur diagnostic, leur apport nutritionnel et leurs médicaments. Ils ont comparé leur apport nutritionnel, les lignes directrices et les recommandations. RÉSULTATS: Les apports étaient inférieurs aux recommandations. Tous les enfants se situaient sous le 50e percentile de poids par rapport à l'âge, et bon nombre se situaient sous le 3e percentile. Quatorze des 15 enfants se situaient dans des percentiles élevés en matière d'adiposité absolue et relative. CONCLUSIONS: Ces enfants ne consommaient pas l'apport nutritionnel recommandé. Pourtant, les mesures d'adiposité indiquaient un apport suffisant. Les valeurs de faible poids peuvent refléter un arrêt de croissance lié au diagnostic ou une masse musculaire et une densité osseuse réduites suscitées par l'immobilité. Le poids par rapport à l'âge et l'indice de masse corporelle des Centers for Disease Control and Prevention (Géorgie, États-Unis) ne sont pas des mesures convenables pour déterminer un apport suffisant dans ce groupe d'enfants.

interRAI Pediatric Home Care (PEDS-HC) Assessment Tool: Evaluating Ontario Healthcare Workers' Experience.

High quality pediatric homecare requires comprehensive assessment of the needs, supports, and health care challenges of children with special healthcare needs and their families. There is no standardized homecare assessment system to evaluate children's clinical needs in the home (support services, equipment, etc.) in Ontario, Canada, which contributes to inequitable homecare service allocation. In 2017, the interRAI Pediatric Home Care assessment tool (PEDS-HC) was implemented on a pilot basis in several regions of Ontario. This qualitative descriptive study explores the experiences of homecare coordinators using the PEDS-HC, seeking to understand the utility and feasibility of this tool through focus group discussion. Four major themes were identified including: the benefits of the tool; areas for modification; challenges to use; and Clinical Assessment Protocols to develop. These themes can guide modifications to the tool to improve utility and improve pediatric home care services. The PEDS-HC is an effective tool to assess children needing homecare in a standardized and comprehensive manner. Use of the tool can improve the quality of homecare services by ensuring equity in service provision and facilitate early identification of clinical issues to prevent unexpected health deteriorations.

Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period.

INTRODUCTION: Perinatal palliative care (PnPC) is a growing field where healthcare providers from multiple disciplines are supporting families and providing holistic care for their babies with life-limiting illnesses. It is important to have an approach that includes the standardized management of end-of-life symptoms that are anticipated around the time of birth. AREAS COVERED: A need was identified to develop medication orders for the initial pharmacological management of symptoms at end-of-life for infants with life-limiting conditions intended for use outside of an intensive care setting. The choice of medications was based on a review of the literature, discussion with content experts and guided by their ease of use, accessibility and noninvasive route of delivery. The recommendations can be used as a guide for the initial management of common symptoms encountered in perinatal palliative care. EXPERT OPINION: There are studies looking at many qualitative aspects of perinatal palliative care including perceptions of care, decision-making, and bereavement; however, few specifically focus on symptom management in the delivery room and postpartum ward settings. There is a need for standardization of the medical management of infants born with life-limiting conditions whose parents choose to pursue palliative care.

Children's Health Care Utilization and Cost in the Last Year of Life: A Cohort Comparison with and without Regional Specialist Pediatric Palliative Care.

Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health care utilization and cost near end of life. Design: A retrospective cohort study used administrative databases to compare outcomes for child decedents (age 31 days to 19 years) from two similar regions in Ontario, Canada between 2010 and 2014, wherein one region had SPPC services (SPPC+) and the other did not (SPPC-). Measurements: Administrative databases provided demographics, health care utilization (days), and costs Canadian dollars) across settings in the last year of life, and location of death. Multivariable analyses produced relative rates (RRs) of health care days (acute and home care), intensive care unit (ICU) days, and health care costs (inpatient, outpatient, home, and physician) as well as the odds ratio (OR) of in-hospital death. Counterfactual analysis quantified the differences in utilization and costs. Results: A total of 807 children were included. On multivariable analysis, residence in the SPPC+ region (n = 363) was associated with fewer mean health care days (RR = 0.73; 95% confidence interval [CI]: 0.59-0.90); fewer mean ICU days (RR = 0.64; 95% CI: 0.44-0.94); lower mean health care costs (RR = 0.71; 95% CI: 0.56-0.91); and lower likelihood of in-hospital death (OR = 0.67; 95% CI: 0.49-0.92). The counterfactual analysis estimated mean reductions of 16.2 days (95% CI: 14.4-18.0) and $24,940 (95% CI: $21,703-$28,177) per child in the SPPC+ region. Conclusions: Although not a causal study, these results support an association between regional SPPC services and decreased health care utilization, intensity, and cost for children near end of life.

The Grief and Bereavement Experiences of Informal Caregivers: A Scoping Review of the North American Literature.

Background: Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers' experiences of grief and bereavement. Objective: To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. Methods: Using Arksey and O'Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. Results: 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. Discussion: Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. Conclusions: Understanding the nuances of informal caregivers' experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.

Informal Caregiving for People With Life-Limiting Illness: Exploring the Knowledge Gaps.

Background: People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada. Methods: Scoping review of the literature following Arksey and O'Malley's framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings. Results: Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support. Conclusions: This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.

Support for Informal Caregivers in Canada: A Scoping Review from a Hospice and Palliative/End-of-Life Care Lens.

Objective: Informal caregivers (ICs) providing care for those at the end-of-life face physical, psycho-social, emotional, and/or financial challenges. However, there is a paucity of research towards the effectiveness of available interventions for this vulnerable population. The purpose of this scoping review was to investigate the availability and efficacy of interventions for ICs providing hospice and palliative/end-of-life care in Canada. Methods: Using Arksey and O'Malley's five step framework, a scoping review was conducted in the spring of 2020. Key electronic healthcare, social sciences, and grey literature databases were searched. Relevant publications from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis was conducted to summarize all key findings. Results: Initial searches yielded 145 results out of which 114 distinct articles were obtained. De-duplication and final screening yielded 28 sources which met inclusion criteria (22 peer-reviewed articles [78%] and 6 grey sources [22%]; 12 qualitative papers [42%]). Through thematic content analysis, four major themes were identified: [1] Direct financial support, [2] Direct psycho-sociospiritual support, [3] Indirect patient information provision/education, and [4] Indirect patient support. Conclusions: Healthcare practitioners should provide information on patient care and financial aid to ICs. Policies should aim to expand eligibility for and access to financial aid, in particular the Compassionate Care Benefits (CCB). Future research should focus on exploring other interventions, such as physical activities, to better support this vulnerable population. The results from this review will help inform and improve the well-being of ICs providing end-of-life care in Canada and beyond.

A multi-stage process to develop quality indicators for community-based palliative care using interRAI data.

BACKGROUND: Individuals receiving palliative care (PC) are generally thought to prefer to receive care and die in their homes, yet little research has assessed the quality of home- and community-based PC. This project developed a set of valid and reliable quality indicators (QIs) that can be generated using data that are already gathered with interRAI assessments-an internationally validated set of tools commonly used in North America for home care clients. The QIs can serve as decision-support measures to assist providers and decision makers in delivering optimal care to individuals and their families. METHODS: The development efforts took part in multiple stages, between 2017-2021, including a workshop with clinicians and decision-makers working in PC, qualitative interviews with individuals receiving PC, families and decision makers and a modified Delphi panel, based on the RAND/ULCA appropriateness method. RESULTS: Based on the workshop results, and qualitative interviews, a set of 27 candidate QIs were defined. They capture issues such as caregiver burden, pain, breathlessness, falls, constipation, nausea/vomiting and loneliness. These QIs were further evaluated by clinicians/decision makers working in PC, through the modified Delphi panel, and five were removed from further consideration, resulting in 22 QIs. CONCLUSIONS: Through in-depth and multiple-stakeholder consultations we developed a set of QIs generated with data already collected with interRAI assessments. These indicators provide a feasible basis for quality benchmarking and improvement systems for care providers aiming to optimize PC to individuals and their families.

Pediatric Project ECHO®: A Virtual Community of Practice to Improve Palliative Care Knowledge and Self-Efficacy among Interprofessional Health Care Providers.

Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness. Objectives: To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months. Intervention: An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate. Design: A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children. Results: Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores (n = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance (p < 0.05). Most participants reported positive practice impacts, including enhanced ability to provide PPC in their practice. Conclusion: Project ECHO is a feasible and impactful model for fostering a virtual PPC-focused community of practice among interprofessional HCPs.

Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting.

Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs Assessment in carers of children, seeking to evaluate and improve its ability to capture their needs. This is a prospective pilot study of family carers of children with serious illness receiving care at a pediatric hospice. Thirty carers completed the self-assessment form. Additional feedback was sought inquiring about the appropriateness of questions and missing information relevant to the pediatric setting. All participants reported the assessment captured important information across multiple domains. Additional questions surrounding extra costs, home and school supports, as well as direct impacts of caregiving activities on pain and relationships were identified as important adaptations. The most common unmet needs in carers and care recipients were episodic relief from caregiving (n=17) and housing adaptation (n=17), respectively. Overall, a comprehensive assessment form is feasible in identifying the diverse needs of family carers of children. Future research should focus on using pediatric specific interRAI tools to guide improvements in policy and practice that can address unmet needs.

Predictors of Specialized Pediatric Palliative Care Involvement and Impact on Patterns of End-of-Life Care in Children With Cancer.

Purpose The impact of specialized pediatric palliative care (SPPC) teams on patterns of end-of-life care is unknown. We sought to determine (1) which children with cancer access SPPC and (2) the impact of accessing SPPC on the risk of experiencing high-intensity end-of-life care (intensive care unit admission, mechanical ventilation, or in-hospital death). Methods Using a provincial childhood cancer registry, we assembled a retrospective cohort of Ontario children with cancer who died between 2000 and 2012 and received care through pediatric institutions with an SPPC team. Patients were linked to population-based administrative data capturing inpatient, outpatient, and emergency visits. Children were classified as having SPPC, general palliative care, or no palliative care on the basis of SPPC clinical databases, physician billing codes, or inpatient diagnosis codes. Results Of the 572 children, 166 (29%) received care from an SPPC team for at least 30 days before death, and 100 (17.5%) received general palliative care. SPPC involvement was significantly less likely for children with hematologic cancers (OR, 0.3; 95% CI, 0.3 to 0.4), living in the lowest income areas (OR, 0.4; 95% CI, 0.2 to 0.8), and living further from the treatment center (OR, 0.5; 95% CI, 0.4 to 0.5). SPPC was associated with a five-fold decrease in odds of intensive care unit admission (OR, 0.2; 95% CI, 0.1 to 0.4), whereas general palliative care had no impact. Similar associations were seen with all secondary indicators. Conclusion When available, SPPC, but not general palliative care, is associated with lower intensity care at the end of life for children with cancer. However, access remains uneven. These results provide the strongest evidence to date supporting the creation of SPPC teams.