BACKGROUND:The impact of social determinants of health (SDoH) on survival outcomes is unclear in the universal Canadian health care system. We investigated the impact of distance to treatment center and income quintile on survival outcomes in pediatric extracranial solid tumors in Canada. METHODS:Children < 15 years old diagnosed with 7 common solid extracranial tumors from 2001 to 2020 were included using the Cancer in Young People in Canada (CYP-C) data tool. We used logistic regression to examine the association of income quintile and distance on cancer outcomes. We used Cox proportional hazard models to examine associations with time-to-event outcomes (OS) and Fine-Gray competing risk regression (recurrence) adjusting for metastasis, age, region, and tumor location. RESULTS:The cohort included 3969 patients. Median age was 3.6 years (IQR: 1.3-8.9); 48.7% were female. Tumor diagnosis: 34% neuroblastoma, 21% Wilms tumor, 13% rhabdomyosarcoma, 11% osteosarcoma, 8% Ewing sarcoma, 7% hepatoblastoma, and 6% germ cell tumors. On multivariable analysis, income quintile and distance did not significantly or consistently impact survival across all tumors. In rhabdomyosarcoma, the second lowest income quintile had inferior survival compared to the highest income quintile (p = 0.0264, HR 1.91, 95% CI 1.08, 3.37). In neuroblastoma, the lowest income quintile had inferior survival compared to the highest (p = 0.0052, HR 1.82, 95% CI 1.20, 2.77). Patients diagnosed with hepatoblastoma living > 500 km from a pediatric treatment facility had inferior OS compared to those within 50 km (p = 0.0065, HR 3.29, 95% CI 1.40, 7.79). CONCLUSION:Overall, distance and income did not show a consistent significant impact on survival outcomes for children with extracranial solid tumors.
Background: Survivors of childhood cancer (SCC) require lifelong ‘late effects’ follow-up care, which typically occurs within specialist clinics located in children’s hospitals. However, with barriers to accessing centralized care, the Pediatric Oncology group of Ontario (POGO) has proposed transition of low-risk adult survivors (≥ 18 years) to their primary care provider (PCP) for follow-up. Research has shown that PCPs are willing to accept this level of care; however, the patient's experience of this policy reform is yet to be explored. Objective: To describe SCC perceptions of transitions of late effects care to family health teams in Ontario. Methods: Qualitative data was collected through interviewing 11 SCC and/or their partners-in-care who have experienced this transition. Interview transcripts were deidentified and double-coded on NVivo via an unconstrained deductive approach to thematic analysis. Analysis is guided by Meleis’s Transition Theory. Results: Preliminary findings show that participants view the transition as a milestone in their cancer journey, which is aligned with other concurrent personal and social transitions. While participants expressed uniform enthusiasm for a primary care approach, citing the value of relational care and knowledge of their wider healthcare needs, there is heterogeneity in their described preparation for transition - with some stating they required additional time for organizing their future healthcare needs and being well equipped to sustain the future responsibility of the ownership of their health as they transition to PCP led care. Conclusion: Survivors embrace transition to PCP-led care and internalize it as a critical juncture in their survivorship journey. Effective transitions can be supported through early communication, intentional survivor engagement, and ongoing patient access to oncologic resources.
Background: Survivors of childhood cancer (SCC) require lifelong follow up due to the risk of late effects after treatment, which has historically been delivered by specialized hospital-based AfterCare clinics. However, the Pediatric Oncology Group of Ontario (POGO) is currently leading an initiative to transition follow up care for survivors over the age of 18 at low risk for late effects to primary care providers (PCP). While survivors are agreeable to this initiative, little is known about how the care transition influences survivor's perceptions about their health history and personal identity as a cancer patient. Objective: To explore how low-risk SCC conceptualize and negotiate their identity in relation to their cancer history when transitioning to PCP-led late effects care. Methods: This research involves secondary analysis of data collected as part of a larger study evaluating SCC care transitions. Semi-structured interviews were conducted with nine adult SCC (ages 18-45) who recently transitioned to PCP-led care. Transcripts were subjected to qualitative analysis guided by the epistemological and identity-focused tenets of the methods of critical discursive psychology. Results: Preliminary analysis suggests SCC participants experience the care transition as an affirmation of their “normal” health status, which reduces their cancer concerns. They articulate fragmented recall of their treatment experiences and express gratitude for their survivor status, while highlighting that their identity as a cancer patient intersects with other personal identities. Notably, they often distance themselves from the diagnosis through biomedical definitions of survivorship and a primary focus on the impacts experienced by family members. Conclusions: Survivors at low risk of late effects who have transitioned care to a PCP endorse an evolving identity and perceive the transition of care to mean stable health. This aligns with the holistic approach of family medicine and supports transition of care to community-based primary care providers.
Language-discordant healthcare encounters—when the patient/caregiver and clinician are not able to communicate directly in the patient's/caregiver's preferred language—are associated with worse quality of care, increased adverse events, and research exclusion. Here, we describe the current state of language justice in clinical practice and research in the United States, Canada, and Spain, discuss the role of social determinants of health and language in patient safety and health outcomes, and review an example of culturally and linguistically concordant interventions to increase research participation. We close with practical and global strategies to increase multilingual research participation and to provide equitable patient- and family-centered care in pediatric hematology-oncology.
Childhood obesity is an ongoing public health crisis, and recent clinical practice guidelines identify addressing the role of social inequities in the disparity of health among children with obesity as an area to address. This study aimed to assess the feasibility of a community navigation intervention in a pediatric weight management clinic. A single-center pilot randomized controlled trial (RCT) recruiting families from a tertiary hospital pediatric weight management program to evaluate the feasibility of a community navigation intervention. The primary feasibility outcomes were recruitment rates (goal to recruit 80 https://clinicaltrials.gov/ct2/show/NCT04711707
ImportanceHypertension affects 6% of all children, and its prevalence is increasing. Childhood hypertension tracks into adulthood and is associated with subclinical cardiovascular disease; however, there is a lack of evidence linking childhood hypertension to cardiovascular outcomes, which may contribute to underdiagnosis and undertreatment.ObjectiveTo determine the long-term associated risk of major adverse cardiac events (MACE) among children diagnosed with hypertension.Design, Setting, and ParticipantsThis was a population-based, retrospective, matched cohort study conducted from 1996 to 2022. The study included all children (aged 3-18 years) alive in Ontario, Canada, from 1996 to 2021, who were identified using provincial administrative health databases. Children with prior kidney replacement therapy were excluded.ExposureIncident hypertension diagnosis, identified by validated case definitions using diagnostic and physician billing claims. Each case was matched with 5 controls without hypertension by age, sex, birth weight, maternal gestational hypertension, prior comorbidities (chronic kidney disease, diabetes, cardiovascular surgery), and a propensity score for hypertension.Main Outcomes and MeasuresThe primary outcome was MACE (a composite of cardiovascular death, stroke, hospitalization for myocardial infarction or unstable angina, or coronary intervention). Time to MACE was evaluated using the Kaplan-Meier method and Cox proportional hazards regression.ResultsA total of 25 605 children (median [IQR] age, 15 [11-17] years; 14 743 male [57.6%]) with hypertension were matched to 128 025 controls without hypertension. Baseline covariates were balanced after propensity score matching, and prior comorbidities were uncommon (hypertension vs control cohort: malignancy, 1451 [5.7%] vs 7908 [6.2%]; congenital heart disease, 1089 [4.3%] vs 5408 [4.2%]; diabetes, 482 [1.9%] vs 2410 [1.9%]). During a median (IQR) of 13.6 (7.8-19.5) years of follow-up, incidence of MACE was 4.6 per 1000 person-years in children with hypertension vs 2.2 per 1000 person-years in controls (hazard ratio, 2.1; 95% CI, 1.9-2.2). Children with hypertension were at higher associated risk of stroke, hospitalization for myocardial infarction or unstable angina, coronary intervention, and congestive heart failure, but not cardiovascular death, compared with nonhypertensive controls.Conclusions and RelevanceChildren diagnosed with hypertension had a higher associated long-term risk of MACE compared with controls without hypertension. Improved detection, follow-up, and control of pediatric hypertension may reduce the risk of adult cardiovascular disease.
OBJECTIVE:The objective is to describe the experiences and perceptions of caregivers who participated in a community systems navigator intervention that addressed unmet social needs. DESIGN, SETTING AND PATIENTS:A qualitative descriptive study with caregivers of children enrolled in a clinical trial addressing unmet social needs of families with children cared for in a tertiary pediatric weight management clinic, through community systems navigation. Participants were asked open-ended questions related to perceptions of social needs screening in clinical settings. Interviews were recorded and analysed using Braun and Clarke's six-phase approach to thematic analysis. RESULTS:Ten parent participants were interviewed. Social needs screening perception and acceptability varied between participants. Social needs screening was comfortable for most but stressful for others. Participants noted that trusting relationships promote comfort with sharing social needs information, and this data should be shared on the electronic health record if accurate and purposeful. They found the online screening tool convenient but thought it could also limit opportunities to elaborate. Some participants noted the intervention of community systems navigation helpful; however, others described the need for more tailored resources. CONCLUSIONS:Screening for unmet social needs in clinical settings is complex and should be family centred, including the consideration of the mode of screening, data sharing in the electronic health record and ensuing interventions. Perspectives of families should drive the design of future larger scale community navigation interventions to address unmet social needs in clinical settings.
BACKGROUND AND AIMS:Studies examing the impact of socioeconomic factors on outcomes in childhood acute lymphoblastic leukemia (ALL) have yielded inconsistent findings. We aimed to determine whether socioeconomic status (SES) or healthcare access are associated with the presence of potentially time-sensitive high-risk features at diagnosis, times to diagnosis or treatment, or survival among children with ALL in Canada. METHODS:We conducted a retrospective cohort study of all children aged less than 15 years diagnosed with first primary ALL between 2001 and 2019 using the Cancer in Young People in Canada national Data Tool, which is population-based. SES was measured using neighborhood income quintiles, and healthcare access proxy measured as distance to treating center. We used logistic regression to examine the associations between income quintile and distance and two potentially time-sensitive indicators of high-risk ALL at diagnosis, white blood cell count (WBC) ≥50 × 109/L, and central nervous system (CNS) disease. We used Cox proportional hazards to examine associations with time-to-event outcomes (times to diagnosis and treatment, event-free survival [EFS], and overall survival [OS]). RESULTS:We included 4189 patients. In multivariable analyses, no associations were found between income quintile and potentially time-sensitive high-risk features at diagnosis, time to diagnosis or treatment, or OS. The only significant SES measure in multivariable survival analysis was superior EFS among those in income quintile 4 as compared to those in the lowest income quintile with a hazard ratio (HR) of 0.70 (confidence interval [CI]: 0.54-0.91). Living at increased distance from treating center was not associated with high WBC at diagnosis, time to diagnosis, EFS, or OS. Associations were seen between distance to treating center and CNS disease at diagnosis and time to treatment, but without a clear pattern across distance quartiles. CONCLUSIONS:Children diagnosed with ALL and treated within Canada's universal healthcare system experience similar treatment and survival outcomes regardless of SES and distance to treatment center. Further work is required using individual-level SES and demographic data to determine if any associations exist, and qualitative assessments to understand barriers to care.
Late effects such as neurocognitive issues and fatigue have been reported in childhood acute lymphoblastic leukemia (cALL) survivors. Yet, their association is often poorly understood. In this study, we wished to (1) describe neurocognitive difficulties and fatigue in a well-characterized cohort of long-term cALL survivors and (2) explore the risk of having neurocognitive deficits as a function of fatigue. Childhood ALL survivors (N = 285) from three Canadian treatment centers completed the DIVERGT battery of cognitive tests and the PedsQL Multidimensional Fatigue Scale. We performed logistic regressions to assess the risk of a survivor to show cognitive deficits (<2.0 SD) depending on their fatigue levels. At least one cognitive deficit on the DIVERGT was present in 31% of participants. Domains primarily affected were working memory, fine motor skills, and verbal fluency. Sleep/rest fatigue in youths was higher than norms (d = 0.35). The risk for cognitive deficits increased independently with levels of fatigue in the domains of cognitive speed and flexibility, working memory, and verbal fluency. For every 10-point increase on general or sleep/rest fatigue on the 0-100 scale, there was a median +23-35% risk of showing a deficit among the 7 tasks significantly associated with fatigue. Fatigue may constitute a complementary target when searching to mitigate cognitive issues in this population.
ContextThere is no universal definition of cancer-related fatigue (CRF) specific to childhood cancer survivors, despite this population facing unique long-term side effects from their cancer. We aimed to synthesize and combine existing definitions of CRF specific to this context to inform on the necessity of a panel of experts to formulate a new definition of CRF for childhood cancer survivors.MethodsThe literature search was performed in various databases. Titles, abstracts, and keywords were screened by two researchers to confirm eligibility. The data extraction process was performed by two researchers. Our search was conducted in various databases.ResultsThirty articles were included in the qualitative analysis. Two coders reached consensus on 14 codes. The thematization process produced 4 themes: frequency, context, attributes, and consequences of CRF. These themes were used to synthesize a definition of CRF, as follows: "In childhood cancer survivors, cancer-related fatigue is a common late effect of cancer and cancer treatments. It is characterized by a subjective, persistent, and multidimensional experience that differs from normal fatigue in the physical, emotional, and/or cognitive spheres. Cancer-related fatigue may have a variety of negative consequences including a reduced quality of life and level of functioning, a lack of vigor, work difficulties, relationship issues, and emotional distress."ConclusionA definition of CRF applicable to childhood cancer survivors is timely to organize research efforts and design appropriate interventions. The proposed definition is a first step towards the formulation of a new definition of CRF specific to childhood cancer survivors by experts.
Objectives Food insecurity (FI) is associated with a number of adverse child health outcomes and increased emergency department (ED) use. The COVID-19 pandemic exacerbated the financial hardship faced by many families. We sought to determine the prevalence of FI among children with ED visits, compare this to pre-pandemic rates, and describe associated risk factors. Methods From September to December 2021, families presenting to a Canadian paediatric ED were asked to complete a survey screening for FI along with health and demographic information. Results were compared to data collected in 2012. Multivariable logistic regression was used to measure associations with FI. Results In 2021, 26% (n = 173/665) of families identified as food insecure compared to 22.7% in 2012 (n = 146/644) a difference of 3.3% (95% CI [-1.4%, 8.1%]). In multivariable analysis, greater number of children in the home (OR 1.19, 95% CI [1.01, 1.41]), financial strain from medical expenses (OR 5.31, 95% CI [3.45, 8.18]), and a lack of primary care access (OR 1.27, 95% CI [1.08, 1.51]) were independent predictors of FI. Less than half of families with FI reported use of food charity, most commonly food banks, while one-quarter received help from family or friends. Families experiencing FI expressed a preference for support through free or low-cost meals and financial assistance with medical expenses. Conclusion More than one in four families attending a paediatric ED screened positive for FI. Future research is needed to examine the effect of support interventions for families assessed in medical care facilities including financial support for those with chronic medical conditions.
There is a paucity of evidence to support interventions that address the social needs of children and families with chronic medical conditions. The primary objective of this pilot randomized controlled trial (RCT) is to assess the feasibility of an intervention that screens for and addresses the social needs of children and families enrolled in a pediatric weight management clinic. We will conduct a single-center, pilot RCT of 40 families with children enrolled in a pediatric weight management program at a tertiary children’s hospital in Ontario, Canada. Families who are experiencing unmet social needs will be randomized to either a community navigator or self-navigation of community resources. The primary feasibility outcomes and criteria for success include the following: (1) recruitment rates, will be successful if 80% of our target sample is met in the 6 months of recruitment; (2) uptake of intervention, will be considered successful if > 80% of families complete the intervention; and (3) follow-up of participants, will be considered successful if > 90% of participants complete all the study visits. The secondary outcomes include estimating the preliminary effects on body mass index, body composition, and quality of life at 6 months. The analysis of feasibility outcomes will be based on descriptive statistics, and analysis of secondary clinical outcomes will be reported as estimates of effect. We will not perform tests of significance since these analyses are purely exploratory. This study is important because it will aim to improve the treatment of pediatric obesity by testing the feasibility of an intervention that addresses unmet social needs. ClinicalTrias.gov : NCT04711707 (Registered January 13, 2021).
Introduction There is lack of diagnostic and treatment resources with variable access to childhood cancer treatment in low- and middle-income countries (LMIC), which may lead to subsequent poor survival. The primary aim of this study was to determine the prevalence and types of traditional and complementary medicine (T&CM) used in Cameroon. Secondarily, we explored determinants of T&CM use, associated costs, perceived benefits and harm, and disclosure of T&CM use to medical team. Methods A prospective, cross-sectional survey among parents and carers of children younger than 15 years of age who had a cancer diagnosis and received cancer treatment at three Baptist Mission hospitals between November 2017 and February 2019. Results Eighty participants completed the survey. Median patient age was 8.1 years (IQR4.1-11.1). There was significant availability (90%) and use (67.5%) of T&CM, whereas 24% thought T&CM would be good for cancer treatment. Common T&CM remedies included herbs and other plant remedies or teas taken by mouth, prayer for healing purposes and skin cutting. Living more than five hours away from the treatment center (P = 0.030), anticipated costs (0.028), and a habit of consulting a traditional healer when sick (P = 0.006) were associated with the use of T&CM. T&CM was mostly paid for in cash (53.7%) or provided free of charge (29.6%). Of importance was the fact that nearly half (44%) did not want to disclose the use of TM to their doctor. Conclusion Pediatric oncology patients used T&CM before and during treatment but were unlikely to disclose its use to the child's health care team.
For health inequities to be successfully addressed through health research, it is necessary for researchers to strive for genuine engagement with stakeholders. Indigenous people provide critical perspectives in Indigenous health research. The objective of this review was to systematically review the existing pediatric Indigenous health research in Canada to determine the prevalence of Indigenous participation. Embase, MEDLINE, Cochrane Library were searched on April 15, 2017 and updated on July 16, 2020. A total of 798 studies focused on the health of Indigenous children ≤18 in Canada were included, of 17,752 abstracts screened in English and French. A total of 46.1% of articles indicated Indigenous participation, increasing over time. Organization/government was the most common form of Indigenous participation (62.8%) and Indigenous researcher as author was least common (10.9%). Participation by child age, geography and topic area varied. The most common category of topic researched was nutrition, lifestyle and anthropometrics. Indigeneity of researchers was determined by self-identification in the papers and may be an underestimate. Although improving over time, less than half of studies about Indigenous children in Canada included Indigenous participation in their execution. Journals and funding bodies must ensure fulsome participation of Indigenous people in research focused on Indigenous children. Impact Indigenous participation in pediatric Indigenous health research is critical to producing ethical relevant and actionable results. This review describes the status of Indigenous participation in this body of work in Canada. This review highlights areas of concern and strength to improve the practices and ethics of medical researchers in this area, thereby increasing relevance of pediatric Indigenous health research to communities.
OBJECTIVES:We aimed to identify contributors to cancer-related fatigue (CRF), explore non-pharmacological interventions addressing CRF, and highlight which contributors were targeted by these interventions in childhood cancer survivors. METHODS:We performed a search in various databases and used the PRISMA-ScR checklist. Findings were synthesized in various different tables and figures in accordance with our objectives. RESULTS:We included 49 articles in this systematic scoping review. We identified 59 significant contributors. Depression and physical activity level were some of the most studied significant contributors. Ten interventional studies were identified (e.g., yoga, physical activity intervention) that addressed 6 contributors (e.g., physical activity level). DISCUSSION:This review is the first to describe and relate contributors and non-pharmacological interventions targeting CRF in childhood cancer survivors. Important clinical implications could be derived from the variety of factors explaining CRF and how it is currently addressed.
Childhood and adolescent brain tumor survivors are at risk for long-term consequences of therapy. We reviewed adherence to long-term follow-up (LTFU) guidelines, assessed provider perspectives, and studied the needs, experience and quality of life (QOL) of pediatric malignant brain tumor survivors in the McMaster Children's Hospital Neuro-Oncology clinic. LTFU areas for improvement were evaluated using an anonymous health provider needs assessment questionnaire. The Cancer Care Experience Questionnaire (CCEQ), Cancer Worry Scale (CWS), Self-Management Skills Scale (SMSS), and PedsQL measured parents/patients' needs and QOL. Individual care plans were based on the Children's Oncology Group (COG) LTFU guidelines. Based on 17 responses, staff perceived areas for improvement included: increased multi-disciplinary participation, improved patient education and increased surveillance for therapy-related late effects. Thirty-two families participated, most felt they received high-quality care. Mean cancer worry scores were low (71.8 (± 28.4)). Survivors reported limited self-management skills (58.5 (±18.2)), requiring support with medical needs and activities of daily living. Overall median QOL scores were 'good' (parental report 72.3 (±17.7), survivor 68.2 (±16.6)). Utilizing survivorship guidelines and assessments from patients, caregivers and health providers, we implemented improvements in our provision of neuro-oncology survivorship care. Lessons learned may assist other LTFU programs.
Background: Despite known clinical and genetic risk factors, predicting anthracycline cardiotoxicity remains challenging. Objective: To develop a risk prediction model for anthracycline cardiotoxicity in childhood cancer survivors. Methods: We performed exome sequencing in 289 childhood cancer survivors at least 3 years from anthracycline exposure. In a nested case-control design, 183 cases with LV ejection fraction (LVEF) ≤55% despite low-dose doxorubicin (DOX) (≤250 mg/m2), and 106 controls with LVEF >55% despite DOX >250 mg/m2 were selected as extreme phenotypes. Rare/low-frequency variants were collapsed to identify genes differentially enriched for variants between cases and controls. The top-ranked genes were functionally evaluated in human induced pluripotent stem cell-derived cardiomyocytes (hiPSC-CMs) and variant enrichment was confirmed in a replication cohort. Using random forest, a risk prediction model that included genetic and clinical predictors was developed. Results: Thirty-one genes were differentially enriched for variants between cases and controls (p<0.001). Only 42.6% cases harbored a variant in these genes compared to 89.6% controls [Odds ratio (95% CI), 0.086 (0.043-0.171), p=3.98x10 -15 ] suggesting that absence of these variants may predispose to cardiotoxicity. A risk prediction model for cardiotoxicity that included clinical and genetic factors had a higher prediction accuracy and lower misclassification rate compared to the clinical model. In vitro inhibition of gene-associated pathways ( PI3KR2, ZNF827 ) provided protection from cardiotoxicity in CMs. Conclusions: Our study identified variants that protect against cardiotoxicity and informed the development of a prediction model for delayed anthracycline cardiotoxicity, and also provided new targets in autophagy genes for development of cardio-protective drugs.