Advancing Childhood Cancer Care in a Post-COVID World
A Synopsis of the 2021 POGO Multidisciplinary Symposium on Childhood Cancer
The COVID-19 pandemic has healthcare providers and the families in our care literally hiding emotions behind masks. Family members cannot fully see the empathy we feel, and as providers, we are unable to use our traditional methods of providing compassionate care. Over the past 18 months, families have had to live their cancer journey in parallel with a global pandemic requiring multiple restrictions to hospital visits, with additional screening and COVID-19 testing. This has elevated levels of distress and burnout for families and hospital care teams alike. Recognizing this, the 2021 POGO Symposium planning committee sought to explore the issues of patient and caregiver distress and resilience, as well as healthcare provider burnout. As part of maintaining professional resiliency beyond the acuteness of COVID-19, the POGO Symposium provided an opportunity to learn about important clinical and diagnostic updates, and continued healthcare and scientific innovation.
Family Stories Remind of our Purpose
A parent testimonial opened day one and grounded us as pediatric oncology professionals in the “why” of our work. In sharing about her 14-year-old daughter’s cancer diagnoses, Guylaine Tremblay touched on the importance of psychosocial supports for all family members. On day two, the Saenz family gave real-life context to the challenge of accessing clinical trials that so many families face. These stories were powerful reminders of the impact a childhood cancer diagnosis has on the family and how the pediatric oncology community must better understand these needs and provide comprehensive and personalized support.
Care for Caregivers of all Stripes
When it comes to caregiver resilience after their child is diagnosed with cancer, we heard that 80% of families will adapt and be resilient based on our standardly-delivered supports and strategies. Of critical importance is finding a way to identify the remaining 20% who will need intensive psychosocial and possibly psychiatric support, and to ensure there are suitable professionals available for referral and intervention. Healthcare teams must also make room for self-compassion in our stressful and often chaotic work days, as we try to leverage available resources to assist families who require extra support.
Delivering Virtual Care to Survivors
The COVID-19 pandemic has also dramatically altered the way we deliver care, and especially aftercare to survivors, with the rapid implementation of virtual care. We learned what can be done well, what was of benefit to patients and families and what could be successfully carried forward in a post-pandemic world. New and innovative approaches to follow-up care include recognizing unique needs tied to the transition from acute care to survivorship clinics.
Clinical and Diagnostic Advances Bring New Hope
Of course new innovations in childhood cancer continue to emerge, and presentations on clinical and diagnostic advances added greatly to our learning. Work in the area of immune checkpoint inhibitors shows great success in treating Hodgkin lymphoma and promise for other diagnoses. It was exciting to hear about updates on CAR T for both B-cell leukemias and acute myeloid leukemia (AML), one of the more difficult childhood cancers to treat. This brings signs of hope for improved outcomes with less toxic therapy approaches. Potentially ground-breaking work in liquid biopsy allows us to imagine a world where we no longer need invasive, surgical intervention to detect cancer both at diagnosis and during cancer surveillance.
Innovation Panel Explores Strategies for Canada
The POGO Symposium wrapped up with a slate of presentations and a panel discussion with luminaries in the field that tackled everything from innovative solutions to improve clinical trial access to how Canada can develop an innovation strategy that serves patients and the economy. The message that innovation is not only invention but the successful development and implementation of these inventions was very strong. This session also highlighted our collective challenge to make available new and often expensive therapies. The discussion presented the opportunity for all of us to consider how we can individually and in partnership move the needle on public policy for advances in pediatric cancer.
With something of interest for everyone, the 2021 POGO Symposium showcased the bravery of families to help us all learn from their stories and the tremendous dedication of professionals who continue to do everything possible to provide excellent care to every child diagnosed with cancer. My hope is that we were all encouraged to heed the challenge of harnessing innovation to transform the landscape of pediatric oncology care.
“Even during the most chaotic day it is important to take a moment to breathe and remember why we chose this very important work, and to be present with our patients and families.”
- Sue Zupanec
Written by Sue Zupanec, co-chair of the 2021 POGO Symposium Planning Committee, with contributions from her co-chair, Dr. David Hodgson, POGO Medical Director and Chair in Childhood Cancer Control.
Sue is a pediatric nurse practitioner in the Leukemia and Lymphoma Program at The Hospital for Sick Children, and Chair, Nursing Discipline of the Children's Oncology Group.
Family Pays it Forward with Pajamas and Pancakes Event
The Welke family put on their PJs, turned up the griddle and opened their home to the community in Stayner, Ontario, to raise funds for POGO. The event was in honour of their daughter Gwendolyn who was five years cancer-free!
POGO helped us when Gwendolyn was diagnosed with an adrenal cortical carcinoma—they provided us with financial assistance when we had to travel to Toronto, and because of the POGO Satellite Clinic in Orillia (Soldiers’ Memorial Hospital), we were able to stay closer to home for some of her treatment. Without the Clinic and financial support, I don’t know how we would have made it through.
When we received the notice in the mail about Pajamas and Pancakes, I turned to my husband and said, “Why don’t we do a small event with our friends and family to raise money for other families going through treatment?”
Want to host your own Pajamas and Pancakes event? We’re here to help! Learn more here.
Our original goal was $1,000 and we thought even that was crazy, but things really took off. I sent print and Facebook invitations to our personal contacts and families who we met at the Orillia Clinic. When a local real estate agency heard about our event, they asked us if we wanted them to advertise for us, so we ended up opening it to the public. We offered coffee, juice, sausages, three pancakes and a topping bar full of whipped topping, chocolate chips and Skor pieces for a minimum donation of $5. We also had a silent auction with a good variety of items donated from friends and family with home businesses.
In the end, over 100 people came through the house, many who we had never met before, and we raised $3,000 for POGO families! I think it was impactful for our guests to meet parents and kids who have been through treatment and benefitted from POGO—they could see exactly where the money would be going.
Gwendolyn had an amazing time. Without fundraising like this, families would not receive the help they need during one of the most stressful times of their lives. It is important to give back. And who doesn’t like pancakes!?!
By Melissa Welke
Editor's Note: This event took place in 2019 prior to the COVID-19 pandemic.
In Conversation with Dr. David Hodgson: A Progress Report of His First Five Years
And Looking Ahead to His Next Five as POGO Medical Director and Chair in Childhood Cancer Control
In November 2021, Dr. David Hodgson (DH) began a second five-year term as POGO Medical Director and Chair in Childhood Cancer Control at the University of Toronto. In conversation, he shares highlights of his very productive first term, 2016 – 2021.
Q: Data-driven quality improvement is one of the five goals of POGO’s Childhood Cancer Care Plan. What initiatives have you undertaken to tackle this pressing priority?
DH: Well, for POGO to drive forward improvements in the childhood cancer system, we need to listen to our clinical partners and families to understand what the needs are, help develop and improve programs that meet those needs, and measure how well we are doing in that mission.
I felt that while POGONIS and our other data holdings are among POGO’s strengths, they were underutilized. So, over the last five years, we published and made available significantly more childhood cancer data to help clinical stakeholders and researchers understand the current state of childhood cancer in Ontario.
POGONIS is POGO’s active cancer registry initiated over 30 years ago to capture diagnosis, treatment and outcome data for children treated at the five specialized childhood cancer programs in Ontario.
We’ve also taken steps to strengthen data quality by implementing automated quality checks to immediately identify possible errors.
POGO produced two provincial childhood cancer surveillance reports (2018 and 2020) making Ontario the only province to publish searchable data regarding the incidence, prevalence and outcome of childhood cancer for different childhood cancer subtypes. In 2020, we saw the first-ever inclusion of POGONIS-derived childhood cancer statistics in the Ontario Cancer Statistics report, and we contributed to the national Cancer in Young People in Canada (CYP-C) Data Tool.
For hospitals, we provided the first POGO Quality Indicators Report, which allowed them to see information such as the type of cancers they care for, wait times and clinical outcomes compared to the province as a whole.
As a result of this work, data is much more available to hospitals, system planners and researchers to undertake activities such as assessing the feasibility of conducting a research study, or understanding the provincial patterns and trends of childhood cancer so the system can be prepared for the future.
Q: What other improvements have been made to POGO’s data?
DH: We have improved the data for specific POGO programs to ensure they are serving children with cancer and survivors in the best way possible. For over 20 years POGO has managed a long-term follow-up program for survivors of childhood cancer through the POGO AfterCare Program delivered in seven clinics across Ontario. We worked with these clinics to update the data collected so that we can assess the impact that these clinics have on survivor care and inform continuous improvement.
Q: Looking ahead, what are your plans for further improvements in data-driven quality?
DH: It is important that we continually work with our clinical and research partners to ensure that we are facilitating their work. Now that we have made these changes to our data collection and reporting, we have to be sure that we are not just collecting data for its own sake. We want to be able to inform clinical programs and research that have a clear path to improving the outcome for children with cancer. This means building collaborations that enhance the clinical and policy relevance of our data.
One great example is the work that the POGO analytics team and our Technology Advisory Committee is doing with Dr. Pechlivanoglou at SickKids to facilitate access to innovative new treatments for children with cancer by developing policy advice for government. This work involves input of clinical experts, access to high-quality data and analytic expertise, and an understanding of the regulatory environment. Any one of these on its own would not be enough, but working together with our clinical and research partners across Ontario, we can make progress that would not be possible without bringing together all the pieces of the puzzle.
I would also like to increase the utility and variety of data holdings we can use and make available to others, and redesign the POGO Research Unit to better support the deliverables of our Childhood Cancer Care Plan.
Q. Survivorship is near and dear to your heart. Tell us about your future focus for the POGO AfterCare Program for childhood cancer survivors.
DH: The POGO AfterCare Program was formally established in 2001 with clinical collaboration of seven clinics throughout Ontario. Developed at a time when few survivors were receiving adequate follow-up care, the initial strategy was to recall and retain as many survivors as possible. More recently, we have worked to integrate the concept of “right care in the right place” into the model of AfterCare.
We recognize that during treatment, POGO Satellite Clinics can provide excellent care for selected patients and problems without requiring the patients to travel to their primary treating hospital. The same can be true for AfterCare. Very few of the tests required by survivors are so high-tech that they need to be done in the primary treating hospital. But the major challenge is ensuring that we can provide the multidisciplinary care that some survivors need, particularly access to mental health supports, which I think are in very short supply. My goals are to ensure survivors with the highest risk for complications are able to access the clinics and receive care appropriate to their situation, and develop a sustainable strategy that better incorporates patients’ primary care providers so that the ever-growing number of survivors have sustained access to appropriate care.
Related Content
In addition to his role as POGO Medical Director and POGO Chair in Childhood Cancer Control at University of Toronto, Dr. David Hodgson is also a radiation oncologist at Princess Margaret Cancer Centre with a cross-appointment to the Division of Hematology/Oncology at The Hospital for Sick Children. He is a professor in the Department of Radiation Oncology at the University of Toronto. He was first appointed as POGO Chair in Childhood Cancer and Medical Director in November 2016. Read his bio
