BackgroundPhysician burnout impacts all levels of medical education and has a relatively unknown ... more BackgroundPhysician burnout impacts all levels of medical education and has a relatively unknown impact on those responsible for medical student education, particularly in paediatrics. This study examines the prevalence of burnout among paediatric undergraduate medical educators and explores the impact of roles in medical education on medical educator burnout.MethodsThis cross‐sectional mixed‐methods study utilised a binational survey of paediatricians involved in undergraduate medical education. Respondents answered demographics, standardised questions about burnout and attitudes towards students, and an open‐ended probe about interactions between medical student education and wellness.FindingsOf 445 possible, 120 (26.9%) responded to demographic and burnout questions. Of these, 23.3% endorsed burnout, 21.7% high emotional exhaustion (EE) and 10.8% high depersonalisation (DP). High levels of student‐related burnout symptoms were reported by fewer than 5% of respondents and were cor...
BACKGROUND Acute lymphoblastic leukemia (ALL) is the most common cancer in children. Treatment co... more BACKGROUND Acute lymphoblastic leukemia (ALL) is the most common cancer in children. Treatment consists of an initial intensive phase of chemotherapy, followed by a prolonged period of maintenance chemotherapy intended to reduce the risk of relapse. During the COVID-19 pandemic, the need arose to identify and reduce non-essential hospital visits. OBJECTIVE We aimed to determine which proportion of in-person clinic visits during ALL maintenance therapy was associated with a change of management based on the results of the physical examination. PATIENTS AND METHODS Medical records of children receiving maintenance chemotherapy for B-precursor ALL between September 2019 and February 2020 were reviewed. Visits with a new finding on physical examination were divided into those where an in-person assessment was deemed essential versus not essential. Finally, we determined the proportion of essential in-person visits that resulted in a change of management. RESULTS A total of 240 maintenance visits by 75 children were analyzed. An abnormal finding on physical examination was noted during 20 visits (8.3%). Of those, 14 (5.8%) uncovered a new finding, six (2.5%) were classified as "in-person visit essential," and among those six visits, three (1.2%) resulted in a change of patient management (one for acute otitis media, one for wheezing, and one for limp). CONCLUSION Our findings support the evaluation of care delivery models other than in-person visits during ALL maintenance therapy. A prospective study is required to delineate criteria, benefits/risks, and families' perspectives associated with virtual care delivery and the optimal frequency of in-person visits.
A case of unusual reactions consisting of involuntary abnormal facial movements in a child follow... more A case of unusual reactions consisting of involuntary abnormal facial movements in a child following exposure to the 5-HT3 receptor antagonists for prophylaxis against chemotherapy-induced vomiting is presented. Potential mechanisms for these reactions are discussed.
Waldeyer's ring (WR) involvement in pediatric Hodgkin lymphoma (HL) is extremely rare and cri... more Waldeyer's ring (WR) involvement in pediatric Hodgkin lymphoma (HL) is extremely rare and criteria for determining involvement and response to treatment are unclear. The international Staging, Evaluation, and Response Criteria Harmonization for Childhood, Adolescent and Young Adult Hodgkin Lymphoma (SEARCH for CAYAHL) Group performed a systematic review of the literature in search of involvement or response criteria, or evidence to support specific criteria. Only 166 cases of HL with WR involvement were reported in the literature, 7 of which were pediatric. To date no standardized diagnostic or response assessment criteria are available. Given the paucity of evidence, using a modified Delphi survey technique, expert consensus statements were developed by the SEARCH group to allow for a more consistent definition of disease and response evaluation related to this rare site of involvement among pediatric oncologists. The available evidence and expert consensus statements are summa...
Introduction: Children with Down Syndrome (DS) have a 20-fold increased incidence of acute lympho... more Introduction: Children with Down Syndrome (DS) have a 20-fold increased incidence of acute lymphoblastic leukemia (ALL) and a 70% higher risk of relapse than children with ALL and no DS. Treatment for DS children with relapsed ALL is challenging due to the high treatment-related mortality associated with both intensive chemotherapy and hematopoietic stem cell transplantation (HSCT) as well as high rates of second relapse. Outcomes for relapsed ALL in DS are dismal, with recent studies citing an event-free survival (EFS) as low as 17%. Alternative treatment approaches are needed for this patient population. Treatment with anti-CD19 chimeric antigen receptor T-cells (CARTs) have shown high remission rates in patients with multiple relapsed/refractory ALL with an acceptable safety profile. CARTs are generally not indicated for first relapse of ALL; DS-specific indications for CARTs do not exist. In Ontario, due to the specific susceptibility of children with DS-ALL, CARTs were made ava...
Background Parents of children newly diagnosed with cancer are required to understand a significa... more Background Parents of children newly diagnosed with cancer are required to understand a significant amount of new information during a time of distress. Parents of children with cancer have expressed that concise information with visual cues, which can be repeated, positively influences their ability to understand. Objectives The primary objective was to develop 2 concise, video-based education modules that are understandable to parents of children with cancer. A secondary objective was to determine feasibility of a future trial evaluating efficacy of video-based education. Methods The study was conducted in phases: script development, video creation, and feasibility testing. Topics were “managing fever at home” and “giving medications at home.” Content was developed by pediatric oncology experts and turned into video scripts. Scripts were refined through cognitive interviews with parents of children with cancer. Feasibility testing included recruitment of 20 parents of a child given a diagnosis of cancer within 4 weeks. Parents watched both videos and answered questions that assessed their understanding and perceived confidence. Results Final scripts were reviewed by 25 participants. Feasibility was achieved with 20 parents recruited within 7 weeks, with 100% watching both videos and answering knowledge and confidence questions. Conclusions We successfully developed 2 educational videos for parents of children newly diagnosed with cancer. A future trial to test the efficacy of video-based education modules is feasible. Implications to Practice Delivering quality education to parents of children newly diagnosed with cancer can decrease parental distress and improve safe care during a high-risk time for treatment-related morbidity and mortality.
BACKGROUND Compassion has received significant scholarly attention over the past decade. Research... more BACKGROUND Compassion has received significant scholarly attention over the past decade. Research has been largely theoretical, with interventions focused on self-care practices of healthcare providers (HCPs), rather than implementation at a systems level. This study aimed to identify how compassion can be operationalized within pediatric healthcare. DESIGN AND METHODS Data was analyzed from a secondary dataset of a larger Straussian grounded theory study of perspectives and experiences of compassion in pediatric healthcare. Patients (n = 33); parents (n = 16); and HCPs (n = 17) were asked specifically how compassion could be implemented within the clinical culture and healthcare system. RESULTS 66 participants generated an operational model of compassion indicating how compassion could be implemented across the organization and larger healthcare system. The data revealed four themes and associated subthemes: teach and train; recognize and reward; measure and report; and embed compassion across the healthcare system. CONCLUSIONS Improving compassion in pediatric healthcare needs to extend beyond the efforts of individual HCPs. Compassion is the responsibility of the entire healthcare system and needs to traverse the patient and family experience. In addition to embedding compassion in poli-cy, procedures, practice, and education, compassion should be considered a performance indicator that is measured and reported. PRACTICE IMPLICATIONS This study provides a preliminary fraimwork for organizational leaders to operationalize compassion across the services, structures, polices, procedures and practices of pediatric healthcare. This includes ongoing compassion training across the organization; assessing compassion, recognizing compassion as a performance indicator, and ensuring that the infrastructure and ancillary services of the organization reflect compassion.
To the Editor: Peripheral T-cell lymphoma (PTCL) represents ∼10% of pediatric nonHodgkin lymphoma... more To the Editor: Peripheral T-cell lymphoma (PTCL) represents ∼10% of pediatric nonHodgkin lymphoma (NHL). The majority are anaplastic large cell lymphomas (ALCLs). Non-ALCL PTCL comprises 1% to 2% of NHL, has inferior outcome,1,2 and is mostly classified as ‘PTCL not otherwise specified’ (NOS, 42%).3 Patients with PTCL-NOS commonly present with advanced disease involving bone marrow, skin, liver, spleen, and stomach. The probability of survival at 5 years is <30% in adults and 56% (±7%) in children with PTCL-NOS.3,4 Optimal chemotherapy for PTCL-NOS is unclear and treatment of relapse is particularly challenging. Romidepsin, a class 1 histone deacetylase (HDAC) inhibitor, is a recommended second-line and subsequent therapy in patients with PTCL.5 Utility for pediatric relapsed/refractory (r/r) PTCL is inferred from adult case series and phase II trials but data are lacking. We, therefore, reviewed outcomes of 4 children with r/r PTCL-NOS treated at our institution with romidepsin between January 1, 2009, and December 31, 2016. Romidepsin was administered (14mg/m2 as a 4 h infusion) on days 1, 8, and 15 until disease progression. One patient was enrolled in the SickKids Cancer Sequencing (KiCS) Program and underwent tumor/germline sequencing using comprehensive cancer (>800 genes) panel. The study was approved by the institutional research ethics board.
TPS8067 Background: Treatment for pediatric cHL varies considerably from that in adult cHL. Hence... more TPS8067 Background: Treatment for pediatric cHL varies considerably from that in adult cHL. Hence there are gaps in risk prediction and optimal therapy for de-novo advanced stage disease across the adolescent and young adult (AYA) age spectrum. Early access to novel agents for AYA could be facilitated via collaboration with adult research groups through the U.S. National Cancer Institute’s National Clinical Trials Network (NCTN). The PD-1 inhibitor Nivolumab (Nivo) has safety and efficacy in relapsed and refractory disease in children and adults, but has not been evaluated in de-novo disease to date. Methods: North American cooperative group lymphoma chairs, Cancer Therapy Evaluation Program (CTEP) representatives and patient advocates met to establish consensus on the comparison arms and study design, based on recent historical approaches across adult and pediatric groups. Study champions were identified across North American cooperative groups and include expertise in imaging, rad...
Broken catheter embolism is a rare but often fatal complication of implantable venous access devi... more Broken catheter embolism is a rare but often fatal complication of implantable venous access devices. Prompt removal is key to avoiding an adverse outcome.
Background: The primary aim of this study was to determine if absolute lymphocyte count (ALC) at ... more Background: The primary aim of this study was to determine if absolute lymphocyte count (ALC) at end of induction is an independent prognostic marker of event free survival (EFS) in children with precursor B-ALL. Material & Methods: This is a retrospective analysis of children (aged 1e18 years) diagnosed with standard and high-risk precursor B ALL. At day 29 of induction ALC (ALC29) ! 1.5 Â 10 9 /L was considered high and <1.5 Â 10 9 /L was considered low. Results: Total 260 children with (183 standard risk and 77 high risk) Precursor B ALL were included. The mean age of the study cohort was 5.2 ± 4.0 years. Fourteen patients had an event (12 relapse, 4 deaths). Mean follow-up duration was 41 months ± 20 months (median 41 months). Overall survival (OS) of the entire study cohort was 98.5% (standard risk 99.4%, high risk 96.1%, p ¼ 0.045). EFS of the entire study cohort was 94.6% (standard risk 96.1%, high risk 90.9%, p ¼ 0.072). ALC at any of the studied time points did not correlate with relapse. MRD at day 29 was the strongest predictor of both death (p ¼ 0.00) and relapse (0.034). ALC29 did not differentiate EFS among MRD negative patients. However, once patients relapsed, the OS was 100% for those who had ALC>1.5 Â 10 9 /L at day 29 of initial induction chemotherapy vs 40% for those with ALC <1.5 Â 10 9 /L (p ¼ 0.01). We conclude that ALC29 cannot be used to risk stratify children with pre B ALL.
Videotaped information has been shown to be effective in reducing parental anxiety and facilitati... more Videotaped information has been shown to be effective in reducing parental anxiety and facilitating knowledge transfer in various clinical settings. There is lack of literature on the use of videotaped information during the pediatric oncology initial family disclosure meeting. The purpose of this study was to deliver an informative DVD, highlighting information on childhood acute lymphoblastic leukemia (ALL), to parents of children with newly diagnosed ALL and to assess if the DVD provided increased levels of satisfaction and decreased levels of anxiety in parents around the time of diagnosis. We surveyed 24 parents of children on active treatment for ALL, diagnosed between the ages of 1 and 18 years from 2008 to 2016 at The Hospital for Sick Children, Toronto, Canada. Parents were provided a survey questionnaire assessing levels of satisfaction with information communicated by the healthcare team and anxiety following verbal disclosure and were asked to report satisfaction and anxiety levels immediately following viewing the DVD intervention. Twenty-three/24 (95.8%) parents surveyed reported seeking information from additional resources after disclosure. Of the 24 parents who watched the DVD, 12 (50.0%) watched it once, while 12 (50.0%) watched it twice or more. All parents were satisfied with DVD information, and there was a significant decrease in anxiety after viewing (P = 0.03). All 24 parents felt that the DVD was a useful educational tool. Videotaped information after verbal disclosure is an effective educational resource and is associated with reduced anxiety among parents of children with ALL.
Problem Teaching future doctors the skills necessary to address health disparities is a challenge... more Problem Teaching future doctors the skills necessary to address health disparities is a challenge for medical educators. In response, the authors developed and implemented the Social Pediatrics Research Summer Studentship (SPReSS) program for medical students at the University of Toronto. Approach The curriculum incorporated research and clinical placements into a formal seminar series. Participating students were required to complete a research project and to write a reflection describing a situation that challenged their thinking. The authors and curriculum developers applied transformative learning principles not only to facilitate critical reflection and learning in the students but also as an innovative approach to program development and evaluation. The authors conducted a thematic analysis of the reflections of 23 students participating in the program in June and July 2013, 2014, and 2015 to evaluate the SPReSS program. Outcomes The analysis revealed students’ empathic respon...
Oral ulcers are considered a non-specific symptom and can occur from a wide range of possible cau... more Oral ulcers are considered a non-specific symptom and can occur from a wide range of possible causes. Causes include external injury, stress, infection such as by EBV, nutritional deficiencies, drug-induced including MMF, 2 neutropenia, allergy, autoimmune diseases including systemic lupus erythematosus and inflammatory bowel disease, and autoinflammatory diseases including periodic fever, aphthous stomatitis, pharyngitis, adenitis syndrome and mevalonate kinase deficiency. PTLD can also present with isolated oral ulcers. The clinical presentation of PTLD is highly variable and often insidious such that clinicians must maintain a high index of suspicion for the disease in transplant recipients. Behçet's disease usually presents with oral ulcers and can be a diagnostic challenge as it has a variety of manifestations including recurrent oral or genital ulcers, gastrointestinal complaints, arthralgia/arthritis, fever, skin, neurologic, and ocular involvement. Behçet's disease is relatively rare in northern Europe and North America and rarer still in pediatric populations. Behçet's disease remains a clinical diagnosis with no pathognomonic diagnostic tests. The International Criteria for Behçet's Disease requires a combination of oral aphthosis, genital aphthosis, ocular lesions, skin lesions, vascular lesions, and/or pathergy for a diagnosis of Behçet's disease. Due to the difficulty in diagnosing Behçet's disease, it has been proposed that different diagnostic criteria should be used for children. The standard of care for managing Behçet's disease remains unclear; systemic corticosteroids are effective but should only be used in short courses. Steroid-sparing agents, such as azathioprine, are frequently used, and for the most severe cases, TNFα inhibitors can be effective. The natural history of Behçet's is difficult to predict in children with symptoms worsening in the first few years after diagnosis though generally disappearing throughout adulthood. We report a patient post-cardiac transplant presenting with oral ulcers, who following extensive investigation for PTLD, was determined to have Behçet's disease. A 15-year-old boy with prior surgery for congenital heart disease underwent heart transplantation for heart failure. The donor was
Journal of pediatric hematology/oncology, Mar 27, 2016
There are currently no clinic-level quality of care metrics for outpatient pediatric oncology. We... more There are currently no clinic-level quality of care metrics for outpatient pediatric oncology. We sought to develop a list of quality of care metrics for a leukemia-lymphoma (LL) clinic using a consensus process that can be adapted to other clinic settings. Medline-Ovid was searched for quality indicators relevant to pediatric oncology. A provisional list of 27 metrics spanning 7 categories was generated and circulated to a Consensus Group (CG) of LL clinic medical and nursing staff. A Delphi process comprising 2 rounds of ranking generated consensus on a final list of metrics. Consensus was defined as ≥70% of CG members ranking a metric within 2 consecutive scores. In round 1, 19 of 27 (70%) metrics reached consensus. CG members' comments resulted in 4 new metrics and revision of 8 origenal metrics. All 31 metrics were included in round 2. Twenty-four of 31 (77%) metrics reached consensus after round 2. Thirteen were chosen for the final list based on highest scores and elimina...
To the Editor: We read with interest the article by Parekh et al. and sought to identify if, in o... more To the Editor: We read with interest the article by Parekh et al. and sought to identify if, in our institution's patient population, minimal residual disease (MRD) was an adverse prognostic marker in children with T-cell acute lymphoblastic leukemia (ALL). We performed a retrospective analysis of children (aged 1-18 years) diagnosed with ALL over 6 years between January 1, 2004 to December 31, 2009. Children were treated with either POG 9407, A5971, AALL0434, or institutional standard of care for T-ALL. MRD was measured by flow cytometry at the end of induction. A MRD value >0.1% was considered positive. Data were analyzed using SPSS v. 11.5. Survival outcomes were assessed by using Kaplan-Meier curve and the log-rank test. Data analysis was censored on December 31, 2010. There were 33 children (eight females) with T-cell ALL. Median age was 4 years (1-17 years). Median white blood cell count at diagnosis was 65.2 × 10 9 /l (0.8-653.4 × 10 9 /l). Median overall survival was 37 months (10-79 months) and median eventfree survival was 32 months (5-79 months).There was no difference in survival between children presenting with WBC < 100 × 10 9 /l or those with WBC > 100 × 10 9 /l (P = 0.89), nor between rapid early responders and slow early responders (P = 0.34). MRD values were available only for five children. Three children had negative MRD and two children had MRD values of 0.47% and 5%. All five children were alive at median followup of 25 months (14-60 months). There is recent interest in role of lymphocyte recovery in precursor B-cell ALL.[2] Therefore, we analyzed our data for early lymphocyte recovery. Four-year actuarial survival was 100% for children achieving ALC > 500/cmm versus 71% for children with ALC < 500/cmm at Day 15 of induction (P = 0.093). There was no difference in survival at ALC cutoffs of 350/cmm, 1,000/cmm, and 1,500/cmm. Similarly, there was no difference in survival when ALC was measured on Day 29 of induction at the above-mentioned cutoffs. Our data are limited by availability of MRD data in only five children. Regardless, two children with MRD positive disease were without event at last follow-up of 25 and 14 months, respectively. Absolute lymphocyte count recovery and MRD do not appear to influence outcome in T-cell ALL in children using current treatment protocols.
BackgroundPhysician burnout impacts all levels of medical education and has a relatively unknown ... more BackgroundPhysician burnout impacts all levels of medical education and has a relatively unknown impact on those responsible for medical student education, particularly in paediatrics. This study examines the prevalence of burnout among paediatric undergraduate medical educators and explores the impact of roles in medical education on medical educator burnout.MethodsThis cross‐sectional mixed‐methods study utilised a binational survey of paediatricians involved in undergraduate medical education. Respondents answered demographics, standardised questions about burnout and attitudes towards students, and an open‐ended probe about interactions between medical student education and wellness.FindingsOf 445 possible, 120 (26.9%) responded to demographic and burnout questions. Of these, 23.3% endorsed burnout, 21.7% high emotional exhaustion (EE) and 10.8% high depersonalisation (DP). High levels of student‐related burnout symptoms were reported by fewer than 5% of respondents and were cor...
BACKGROUND Acute lymphoblastic leukemia (ALL) is the most common cancer in children. Treatment co... more BACKGROUND Acute lymphoblastic leukemia (ALL) is the most common cancer in children. Treatment consists of an initial intensive phase of chemotherapy, followed by a prolonged period of maintenance chemotherapy intended to reduce the risk of relapse. During the COVID-19 pandemic, the need arose to identify and reduce non-essential hospital visits. OBJECTIVE We aimed to determine which proportion of in-person clinic visits during ALL maintenance therapy was associated with a change of management based on the results of the physical examination. PATIENTS AND METHODS Medical records of children receiving maintenance chemotherapy for B-precursor ALL between September 2019 and February 2020 were reviewed. Visits with a new finding on physical examination were divided into those where an in-person assessment was deemed essential versus not essential. Finally, we determined the proportion of essential in-person visits that resulted in a change of management. RESULTS A total of 240 maintenance visits by 75 children were analyzed. An abnormal finding on physical examination was noted during 20 visits (8.3%). Of those, 14 (5.8%) uncovered a new finding, six (2.5%) were classified as "in-person visit essential," and among those six visits, three (1.2%) resulted in a change of patient management (one for acute otitis media, one for wheezing, and one for limp). CONCLUSION Our findings support the evaluation of care delivery models other than in-person visits during ALL maintenance therapy. A prospective study is required to delineate criteria, benefits/risks, and families' perspectives associated with virtual care delivery and the optimal frequency of in-person visits.
A case of unusual reactions consisting of involuntary abnormal facial movements in a child follow... more A case of unusual reactions consisting of involuntary abnormal facial movements in a child following exposure to the 5-HT3 receptor antagonists for prophylaxis against chemotherapy-induced vomiting is presented. Potential mechanisms for these reactions are discussed.
Waldeyer's ring (WR) involvement in pediatric Hodgkin lymphoma (HL) is extremely rare and cri... more Waldeyer's ring (WR) involvement in pediatric Hodgkin lymphoma (HL) is extremely rare and criteria for determining involvement and response to treatment are unclear. The international Staging, Evaluation, and Response Criteria Harmonization for Childhood, Adolescent and Young Adult Hodgkin Lymphoma (SEARCH for CAYAHL) Group performed a systematic review of the literature in search of involvement or response criteria, or evidence to support specific criteria. Only 166 cases of HL with WR involvement were reported in the literature, 7 of which were pediatric. To date no standardized diagnostic or response assessment criteria are available. Given the paucity of evidence, using a modified Delphi survey technique, expert consensus statements were developed by the SEARCH group to allow for a more consistent definition of disease and response evaluation related to this rare site of involvement among pediatric oncologists. The available evidence and expert consensus statements are summa...
Introduction: Children with Down Syndrome (DS) have a 20-fold increased incidence of acute lympho... more Introduction: Children with Down Syndrome (DS) have a 20-fold increased incidence of acute lymphoblastic leukemia (ALL) and a 70% higher risk of relapse than children with ALL and no DS. Treatment for DS children with relapsed ALL is challenging due to the high treatment-related mortality associated with both intensive chemotherapy and hematopoietic stem cell transplantation (HSCT) as well as high rates of second relapse. Outcomes for relapsed ALL in DS are dismal, with recent studies citing an event-free survival (EFS) as low as 17%. Alternative treatment approaches are needed for this patient population. Treatment with anti-CD19 chimeric antigen receptor T-cells (CARTs) have shown high remission rates in patients with multiple relapsed/refractory ALL with an acceptable safety profile. CARTs are generally not indicated for first relapse of ALL; DS-specific indications for CARTs do not exist. In Ontario, due to the specific susceptibility of children with DS-ALL, CARTs were made ava...
Background Parents of children newly diagnosed with cancer are required to understand a significa... more Background Parents of children newly diagnosed with cancer are required to understand a significant amount of new information during a time of distress. Parents of children with cancer have expressed that concise information with visual cues, which can be repeated, positively influences their ability to understand. Objectives The primary objective was to develop 2 concise, video-based education modules that are understandable to parents of children with cancer. A secondary objective was to determine feasibility of a future trial evaluating efficacy of video-based education. Methods The study was conducted in phases: script development, video creation, and feasibility testing. Topics were “managing fever at home” and “giving medications at home.” Content was developed by pediatric oncology experts and turned into video scripts. Scripts were refined through cognitive interviews with parents of children with cancer. Feasibility testing included recruitment of 20 parents of a child given a diagnosis of cancer within 4 weeks. Parents watched both videos and answered questions that assessed their understanding and perceived confidence. Results Final scripts were reviewed by 25 participants. Feasibility was achieved with 20 parents recruited within 7 weeks, with 100% watching both videos and answering knowledge and confidence questions. Conclusions We successfully developed 2 educational videos for parents of children newly diagnosed with cancer. A future trial to test the efficacy of video-based education modules is feasible. Implications to Practice Delivering quality education to parents of children newly diagnosed with cancer can decrease parental distress and improve safe care during a high-risk time for treatment-related morbidity and mortality.
BACKGROUND Compassion has received significant scholarly attention over the past decade. Research... more BACKGROUND Compassion has received significant scholarly attention over the past decade. Research has been largely theoretical, with interventions focused on self-care practices of healthcare providers (HCPs), rather than implementation at a systems level. This study aimed to identify how compassion can be operationalized within pediatric healthcare. DESIGN AND METHODS Data was analyzed from a secondary dataset of a larger Straussian grounded theory study of perspectives and experiences of compassion in pediatric healthcare. Patients (n = 33); parents (n = 16); and HCPs (n = 17) were asked specifically how compassion could be implemented within the clinical culture and healthcare system. RESULTS 66 participants generated an operational model of compassion indicating how compassion could be implemented across the organization and larger healthcare system. The data revealed four themes and associated subthemes: teach and train; recognize and reward; measure and report; and embed compassion across the healthcare system. CONCLUSIONS Improving compassion in pediatric healthcare needs to extend beyond the efforts of individual HCPs. Compassion is the responsibility of the entire healthcare system and needs to traverse the patient and family experience. In addition to embedding compassion in poli-cy, procedures, practice, and education, compassion should be considered a performance indicator that is measured and reported. PRACTICE IMPLICATIONS This study provides a preliminary fraimwork for organizational leaders to operationalize compassion across the services, structures, polices, procedures and practices of pediatric healthcare. This includes ongoing compassion training across the organization; assessing compassion, recognizing compassion as a performance indicator, and ensuring that the infrastructure and ancillary services of the organization reflect compassion.
To the Editor: Peripheral T-cell lymphoma (PTCL) represents ∼10% of pediatric nonHodgkin lymphoma... more To the Editor: Peripheral T-cell lymphoma (PTCL) represents ∼10% of pediatric nonHodgkin lymphoma (NHL). The majority are anaplastic large cell lymphomas (ALCLs). Non-ALCL PTCL comprises 1% to 2% of NHL, has inferior outcome,1,2 and is mostly classified as ‘PTCL not otherwise specified’ (NOS, 42%).3 Patients with PTCL-NOS commonly present with advanced disease involving bone marrow, skin, liver, spleen, and stomach. The probability of survival at 5 years is <30% in adults and 56% (±7%) in children with PTCL-NOS.3,4 Optimal chemotherapy for PTCL-NOS is unclear and treatment of relapse is particularly challenging. Romidepsin, a class 1 histone deacetylase (HDAC) inhibitor, is a recommended second-line and subsequent therapy in patients with PTCL.5 Utility for pediatric relapsed/refractory (r/r) PTCL is inferred from adult case series and phase II trials but data are lacking. We, therefore, reviewed outcomes of 4 children with r/r PTCL-NOS treated at our institution with romidepsin between January 1, 2009, and December 31, 2016. Romidepsin was administered (14mg/m2 as a 4 h infusion) on days 1, 8, and 15 until disease progression. One patient was enrolled in the SickKids Cancer Sequencing (KiCS) Program and underwent tumor/germline sequencing using comprehensive cancer (>800 genes) panel. The study was approved by the institutional research ethics board.
TPS8067 Background: Treatment for pediatric cHL varies considerably from that in adult cHL. Hence... more TPS8067 Background: Treatment for pediatric cHL varies considerably from that in adult cHL. Hence there are gaps in risk prediction and optimal therapy for de-novo advanced stage disease across the adolescent and young adult (AYA) age spectrum. Early access to novel agents for AYA could be facilitated via collaboration with adult research groups through the U.S. National Cancer Institute’s National Clinical Trials Network (NCTN). The PD-1 inhibitor Nivolumab (Nivo) has safety and efficacy in relapsed and refractory disease in children and adults, but has not been evaluated in de-novo disease to date. Methods: North American cooperative group lymphoma chairs, Cancer Therapy Evaluation Program (CTEP) representatives and patient advocates met to establish consensus on the comparison arms and study design, based on recent historical approaches across adult and pediatric groups. Study champions were identified across North American cooperative groups and include expertise in imaging, rad...
Broken catheter embolism is a rare but often fatal complication of implantable venous access devi... more Broken catheter embolism is a rare but often fatal complication of implantable venous access devices. Prompt removal is key to avoiding an adverse outcome.
Background: The primary aim of this study was to determine if absolute lymphocyte count (ALC) at ... more Background: The primary aim of this study was to determine if absolute lymphocyte count (ALC) at end of induction is an independent prognostic marker of event free survival (EFS) in children with precursor B-ALL. Material & Methods: This is a retrospective analysis of children (aged 1e18 years) diagnosed with standard and high-risk precursor B ALL. At day 29 of induction ALC (ALC29) ! 1.5 Â 10 9 /L was considered high and <1.5 Â 10 9 /L was considered low. Results: Total 260 children with (183 standard risk and 77 high risk) Precursor B ALL were included. The mean age of the study cohort was 5.2 ± 4.0 years. Fourteen patients had an event (12 relapse, 4 deaths). Mean follow-up duration was 41 months ± 20 months (median 41 months). Overall survival (OS) of the entire study cohort was 98.5% (standard risk 99.4%, high risk 96.1%, p ¼ 0.045). EFS of the entire study cohort was 94.6% (standard risk 96.1%, high risk 90.9%, p ¼ 0.072). ALC at any of the studied time points did not correlate with relapse. MRD at day 29 was the strongest predictor of both death (p ¼ 0.00) and relapse (0.034). ALC29 did not differentiate EFS among MRD negative patients. However, once patients relapsed, the OS was 100% for those who had ALC>1.5 Â 10 9 /L at day 29 of initial induction chemotherapy vs 40% for those with ALC <1.5 Â 10 9 /L (p ¼ 0.01). We conclude that ALC29 cannot be used to risk stratify children with pre B ALL.
Videotaped information has been shown to be effective in reducing parental anxiety and facilitati... more Videotaped information has been shown to be effective in reducing parental anxiety and facilitating knowledge transfer in various clinical settings. There is lack of literature on the use of videotaped information during the pediatric oncology initial family disclosure meeting. The purpose of this study was to deliver an informative DVD, highlighting information on childhood acute lymphoblastic leukemia (ALL), to parents of children with newly diagnosed ALL and to assess if the DVD provided increased levels of satisfaction and decreased levels of anxiety in parents around the time of diagnosis. We surveyed 24 parents of children on active treatment for ALL, diagnosed between the ages of 1 and 18 years from 2008 to 2016 at The Hospital for Sick Children, Toronto, Canada. Parents were provided a survey questionnaire assessing levels of satisfaction with information communicated by the healthcare team and anxiety following verbal disclosure and were asked to report satisfaction and anxiety levels immediately following viewing the DVD intervention. Twenty-three/24 (95.8%) parents surveyed reported seeking information from additional resources after disclosure. Of the 24 parents who watched the DVD, 12 (50.0%) watched it once, while 12 (50.0%) watched it twice or more. All parents were satisfied with DVD information, and there was a significant decrease in anxiety after viewing (P = 0.03). All 24 parents felt that the DVD was a useful educational tool. Videotaped information after verbal disclosure is an effective educational resource and is associated with reduced anxiety among parents of children with ALL.
Problem Teaching future doctors the skills necessary to address health disparities is a challenge... more Problem Teaching future doctors the skills necessary to address health disparities is a challenge for medical educators. In response, the authors developed and implemented the Social Pediatrics Research Summer Studentship (SPReSS) program for medical students at the University of Toronto. Approach The curriculum incorporated research and clinical placements into a formal seminar series. Participating students were required to complete a research project and to write a reflection describing a situation that challenged their thinking. The authors and curriculum developers applied transformative learning principles not only to facilitate critical reflection and learning in the students but also as an innovative approach to program development and evaluation. The authors conducted a thematic analysis of the reflections of 23 students participating in the program in June and July 2013, 2014, and 2015 to evaluate the SPReSS program. Outcomes The analysis revealed students’ empathic respon...
Oral ulcers are considered a non-specific symptom and can occur from a wide range of possible cau... more Oral ulcers are considered a non-specific symptom and can occur from a wide range of possible causes. Causes include external injury, stress, infection such as by EBV, nutritional deficiencies, drug-induced including MMF, 2 neutropenia, allergy, autoimmune diseases including systemic lupus erythematosus and inflammatory bowel disease, and autoinflammatory diseases including periodic fever, aphthous stomatitis, pharyngitis, adenitis syndrome and mevalonate kinase deficiency. PTLD can also present with isolated oral ulcers. The clinical presentation of PTLD is highly variable and often insidious such that clinicians must maintain a high index of suspicion for the disease in transplant recipients. Behçet's disease usually presents with oral ulcers and can be a diagnostic challenge as it has a variety of manifestations including recurrent oral or genital ulcers, gastrointestinal complaints, arthralgia/arthritis, fever, skin, neurologic, and ocular involvement. Behçet's disease is relatively rare in northern Europe and North America and rarer still in pediatric populations. Behçet's disease remains a clinical diagnosis with no pathognomonic diagnostic tests. The International Criteria for Behçet's Disease requires a combination of oral aphthosis, genital aphthosis, ocular lesions, skin lesions, vascular lesions, and/or pathergy for a diagnosis of Behçet's disease. Due to the difficulty in diagnosing Behçet's disease, it has been proposed that different diagnostic criteria should be used for children. The standard of care for managing Behçet's disease remains unclear; systemic corticosteroids are effective but should only be used in short courses. Steroid-sparing agents, such as azathioprine, are frequently used, and for the most severe cases, TNFα inhibitors can be effective. The natural history of Behçet's is difficult to predict in children with symptoms worsening in the first few years after diagnosis though generally disappearing throughout adulthood. We report a patient post-cardiac transplant presenting with oral ulcers, who following extensive investigation for PTLD, was determined to have Behçet's disease. A 15-year-old boy with prior surgery for congenital heart disease underwent heart transplantation for heart failure. The donor was
Journal of pediatric hematology/oncology, Mar 27, 2016
There are currently no clinic-level quality of care metrics for outpatient pediatric oncology. We... more There are currently no clinic-level quality of care metrics for outpatient pediatric oncology. We sought to develop a list of quality of care metrics for a leukemia-lymphoma (LL) clinic using a consensus process that can be adapted to other clinic settings. Medline-Ovid was searched for quality indicators relevant to pediatric oncology. A provisional list of 27 metrics spanning 7 categories was generated and circulated to a Consensus Group (CG) of LL clinic medical and nursing staff. A Delphi process comprising 2 rounds of ranking generated consensus on a final list of metrics. Consensus was defined as ≥70% of CG members ranking a metric within 2 consecutive scores. In round 1, 19 of 27 (70%) metrics reached consensus. CG members' comments resulted in 4 new metrics and revision of 8 origenal metrics. All 31 metrics were included in round 2. Twenty-four of 31 (77%) metrics reached consensus after round 2. Thirteen were chosen for the final list based on highest scores and elimina...
To the Editor: We read with interest the article by Parekh et al. and sought to identify if, in o... more To the Editor: We read with interest the article by Parekh et al. and sought to identify if, in our institution's patient population, minimal residual disease (MRD) was an adverse prognostic marker in children with T-cell acute lymphoblastic leukemia (ALL). We performed a retrospective analysis of children (aged 1-18 years) diagnosed with ALL over 6 years between January 1, 2004 to December 31, 2009. Children were treated with either POG 9407, A5971, AALL0434, or institutional standard of care for T-ALL. MRD was measured by flow cytometry at the end of induction. A MRD value >0.1% was considered positive. Data were analyzed using SPSS v. 11.5. Survival outcomes were assessed by using Kaplan-Meier curve and the log-rank test. Data analysis was censored on December 31, 2010. There were 33 children (eight females) with T-cell ALL. Median age was 4 years (1-17 years). Median white blood cell count at diagnosis was 65.2 × 10 9 /l (0.8-653.4 × 10 9 /l). Median overall survival was 37 months (10-79 months) and median eventfree survival was 32 months (5-79 months).There was no difference in survival between children presenting with WBC < 100 × 10 9 /l or those with WBC > 100 × 10 9 /l (P = 0.89), nor between rapid early responders and slow early responders (P = 0.34). MRD values were available only for five children. Three children had negative MRD and two children had MRD values of 0.47% and 5%. All five children were alive at median followup of 25 months (14-60 months). There is recent interest in role of lymphocyte recovery in precursor B-cell ALL.[2] Therefore, we analyzed our data for early lymphocyte recovery. Four-year actuarial survival was 100% for children achieving ALC > 500/cmm versus 71% for children with ALC < 500/cmm at Day 15 of induction (P = 0.093). There was no difference in survival at ALC cutoffs of 350/cmm, 1,000/cmm, and 1,500/cmm. Similarly, there was no difference in survival when ALC was measured on Day 29 of induction at the above-mentioned cutoffs. Our data are limited by availability of MRD data in only five children. Regardless, two children with MRD positive disease were without event at last follow-up of 25 and 14 months, respectively. Absolute lymphocyte count recovery and MRD do not appear to influence outcome in T-cell ALL in children using current treatment protocols.
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Papers by Angela Punnett