POGO Childhood Cancer Data Informs New Cancer Statistics Reports
This year, POGO data will inform three Canadian cancer statistics reports—an important milestone in POGO’s efforts to monitor and publicly report on the impact of childhood cancer in Ontario, in alignment with one of the five goals of our Childhood Cancer Care Plan 2018-2023.
Later in September, for Childhood Cancer Awareness Month, POGO will release Childhood Cancer in Ontario: The 2020 POGO Surveillance Report, an update of our comprehensive and detailed provincial childhood cancer surveillance statistics. This report continues to confirm that Ontario’s childhood cancer survival rates are among the highest in the world and that all types of childhood cancer are rare (less than 6 per 100,000 children per year). It also provides information about the number of Ontarians each year who were diagnosed with cancer as children (prevalence). In addition to updating the data and trends, new details about cancer subtypes and age groups have been added.
August 2020 marked the first-ever inclusion of childhood cancer statistics, generated based on analyses by POGO from data in POGONIS (POGO’s childhood cancer database), in the Ontario Cancer Statistics report, which was released by Ontario Health (Cancer Care Ontario). This report provides a comprehensive summary of the burden of cancer in Ontario residents of all ages and helps to answer vital questions such as: What types of cancer occur in children in Ontario as compared to adults? How does childhood cancer, mortality and survival compare to adult cancers?
In addition, POGO continues to collaborate with the Public Health Agency of Canada by providing timely and high-quality childhood cancer data from POGONIS to populate the Canadian childhood cancer surveillance database, Cancer in Young People in Canada (CYP-C). This ensures that the Ontario childhood cancer population data is included in national reports, such as the CYP-C Data Tool, to yield key information, such as how childhood cancer incidence in Ontario compares with other provinces/territories and Canada overall.
POGO ensures that the latest, high-quality childhood cancer data from POGONIS is available to generate childhood cancer statistics for use by healthcare professionals, researchers, system and program planners, and policy- and decision-makers to help drive an effective childhood cancer care system. By working in partnership with organizations like Ontario Health (Cancer Care Ontario) and the Public Health Agency of Canada, as well as with the hospitals that treat children with cancer in Ontario, to monitor and report on the burden of childhood cancer in the province, POGO aims to achieve the best childhood cancer care system for children, youth, their families and survivors in Ontario and beyond.
We hope you find these reports to be helpful references in your efforts to champion childhood cancer care!
Benefits of Home Visits for Families of Children with Cancer
A Reflection from POGO Interlink Nurses
POGO Interlink Nurses are the healthcare team members who connect the family to important hospital and community supports—including school*—so it makes perfect sense that in-home visits are integral to our work. In fact, we rely on these visits to establish a connection with our patients, their siblings and other family members in a more meaningful way and in a safe place, which is especially important for siblings.
But just as important, the home visit is a critical part of determining how the family is doing. Home visits typically allow us to use observation and our assessment expertise to gain greater insight to a family’s circumstances which cannot be duplicated in virtual visits. Being in a family’s environment gives us a glimpse of how their lives are at the time and what added stressors they may have. The broad range of factors, including social, economic, cultural and psychological that influence family coping and their adjustment to a child’s cancer diagnosis can be observed in a home differently from meeting in any other environment.
Read more about the POGO Interlink Community Cancer Nurses Program and watch this video.
Family structure, poverty and access to resources can reveal themselves (literally) and avoid the need for us to ask questions that might be misconstrued as “intrusive.” Still, we believe that many parents will share more readily when we are sitting with them in their home. Also, it is during the home visit when we might see that, for example, three family members are sharing the same bed or there is mould growing in the bathroom. We come to better understand that a family might have difficulty getting their ill child to clinic because they do not have access to transportation or there’s an elderly or sick grandparent in the home who cannot be left alone. The home environment provides context for setting up teaching. It can tell us if the family is able to cope with the complexity of home drug administration, like chemotherapy; palliative care for a dying child; or providing supportive care to help prevent and manage any adverse effects of the child’s cancer and its treatment.
This reflection by POGO Interlink Nurses was written in September 2020, in the first few months of the COVID-19 pandemic.
Our Community and Partners Rally for POGO during COVID-19 Pandemic
Since late March, POGO has had to pivot along with our partners as the new reality of COVID-19 set in. For our partners, adapting to this new normal meant thinking of new ways to bring people together safely and changing the way to raise funds in support of childhood cancer. The outcome is an overwhelming display of community involvement to champion childhood cancer care.
POGO has been working to reduce the impact COVID-19 is having on the childhood cancer community. A video campaign featuring POGO Associate Medical Director Dr. Paul Gibson explains how, even though much of our lives has been put on hold during the pandemic, chemotherapy, surgery and radiation therapy continue for children with cancer. COVID-19 placed an even greater strain on families already dealing with their child’s cancer diagnosis. Our community rallied around our call for support and raised more than $21,000 to help offset the increased financial strain families will face.
The Toronto Women’s Run Series is a long-time POGO supporter, offering racing events to inspire, motivate and allow women to set their own pace. Because we have been unable to connect in person, the originally scheduled Half Marathon/10k/5k at Sunnybrook Park was the first event in the run series to go virtual. From May 17 to June 7, 2020, more than 1000 runners from far and wide crossed the finish line virtually and surpassed our fundraising goal by raising more than $20,000 for childhood cancer care! We await the results of the Virtual 10k/5k Run that ended September 7 and the Virtual 8k/5k Run takes place October 24 – November 14, 2020, so register today!
Read one runner’s perspective in "The Value in Virtual Racing"
Our friends at Good Hood Club brainstormed different ways to support children with cancer, survivors and their families during lock down. The student-run loungewear company reached out to their network and created Good Hood Care Kits for children receiving treatment in POGO Satellite Clinics. Kits are full of homemade cards, fun crafts and other goodies made by members of the Good Hood community to put smiles on children’s faces.
Bruce Power connected with its partners in the nuclear supply chain to lend a hand to charitable organizations continuing to help people during the pandemic. The 2020 Charitable Events Sponsorship Program is benefitting POGO and several other organizations throughout Ontario. This collective support helps ensure access to the best possible care and support for everyone affected by childhood cancer during these challenging times.
LINKED for Life was created by POGO’s Survivor to Survivor (S2S) Network facilitators to raise both awareness about the late effects survivors face and funds in support of POGO. The goal is to create a visual representation of the connection between the childhood cancer community and those who support it. Colourful paper links will be hung at six participating hospitals during Childhood Cancer Awareness Month in September. Show your own support by purchasing your own link ($5) and sharing #LINKEDforLife on social media.
POGO is grateful to our strong network of childhood cancer champions. By thinking creatively and relying on the kindness of one another, we are able to ensure the continuity of the programs that benefit children with cancer, youth, their families and survivors in Ontario.
Have a great idea for a fundraiser in support of childhood cancer care? Contact us at events@pogo.ca and we'll help you get started!
POGO Connects Childhood Cancer Survivors to Much-Needed Primary Care
Many childhood cancer survivors attending a POGO AfterCare Clinic report that they do not have a primary care practitioner. In fact, survivors are concerned that because childhood cancer is a relatively rare disease, most primary care practitioners are unlikely to have expertise in managing the late effects of treatment.
The main purpose of POGO AfterCare Clinics is to provide follow-up care for survivors of childhood cancer to ensure appropriate monitoring of long-term and possible late effects associated with the original disease and its treatment. Most survivors are seen in POGO AfterCare Clinics only once a year. But for many, particularly those living in rural or remote communities, even once a year is a challenge.
“It is critical that every survivor of childhood cancer has a family doctor,” says Dr. Stacey Marjerrison, POGO AfterCare Program Director, McMaster Children’s Hospital. “The POGO AfterCare Clinic team is focused on the late effects of the treatment, while the family doctor is focused on all aspects of wellness. If we identify any important late effects, like heart or lung problems, we need to be able to work with the family doctor to make sure the childhood cancer survivor continues to get the best care through their lifetime.”
POGO AfterCare Aims for Shared-care Partnership with Primary Care
Following an extensive consultation, POGO, through its Childhood Cancer Care Plan: A Roadmap for Ontario 2018 – 2023, defined a strategy to engage primary care practitioners and family health teams in the care of childhood cancer survivors. Beginning in 2019, the seven POGO AfterCare Clinics began a coordinated and concerted effort to make these connections. The goal is a shared-care partnership, fostering two-way communication and support between the primary care practitioner and the survivor’s AfterCare team, with the latter providing information and education about childhood cancer and its potential late effects.
“As a childhood cancer survivor, my health care is often complex,” says Kirsten, a young adult, who attends the POGO AfterCare Clinic at Toronto’s Princess Margaret Cancer Centre, 50 kilometres from her home in Brampton, Ontario. “The long-term side effects of chemo aren’t 100% known. The POGO AfterCare Clinic team is specialized to look at the drugs that I took during my treatment and allows me to receive testing and screening that might anticipate late effects. This allows my family doctor to focus on my general health and wellbeing. Without either side of my medical team, I would not be able to ensure I'm receiving optimal care.”
UPDATE: Dedicated staff across the POGO AfterCare Clinics have completed discussions with 131 primary care practices about accepting a survivor. Many of the participating primary care practices serve northern, rural and remote communities.
Caring for Survivors Increasingly Important as Population of Survivors Grows
Researchers tell us that up to 80%1 of childhood cancer survivors will experience at least one or more chronic health conditions by age 45 due to treatment they received to cure their cancer. As early as the 1950s, clinicians began to see that many more children were beating cancer, but that was only half the battle. Children treated for a childhood cancer were surviving only to develop significant therapy-related health problems later in life.
With the increasing success of childhood cancer treatments, caring for the growing survivor population with their unique healthcare needs becomes even more important. From the POGO Surveillance Report, we know that as of 2017, nearly 20,0002 children and youth in Ontario are survivors of childhood cancer. And right now, about 1 in 460 adults between the ages of 20 and 39 years is a childhood cancer survivor. As this population ages, their health care needs related to treatment late effects will rise.
The History of POGO AfterCare
In early 2001, POGO launched a network of survivorship clinics located in London, Hamilton, Toronto, Kingston and Ottawa for pediatric and adult survivors of a childhood cancer. POGO AfterCare Clinics, staffed by oncologists, nurses and allied health professionals, provide long-term follow-up care, including clinical examination for signs and symptoms of late effects, recommending tests such as an echocardiogram for possible heart problems in patients who received certain therapies, and referring survivors for breast and/or colorectal cancer screening based on clinical practice recommendations that take into account their cancer treatment history.
1Nathan PC, Agha M, Pole JD, Hodgson D et al Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer. J Cancer Surviv 2016
2Alive at least five years, or close to 5 years, after diagnosis.
Coronavirus (COVID-19) Information
POGO continues to actively monitor the COVID-19 situation to keep our teams healthy and informed, and to ensure continuity of our work on behalf of children with cancer, their families, survivors and the childhood cancer care system. Healthcare teams working in our partner hospitals and within POGO Satellite Clinics, POGO AfterCare Clinics and in the POGO Interlink Program continue to follow the guidelines of their respective institutions, keeping POGO updated about any modifications to their practice. Families registered in the POGO Financial Assistance Program should continue to submit their claims as usual. While the precautionary measures being made at this time may not be convenient, we appreciate everyone’s continued patience, understanding and cooperation.
For the latest COVID-19 information:
- Toronto Public Health
- Ministry of Health - Ontario
- Public Health Agency of Canada
POGO Office Staff Working Remotely
In line with the advice of public health authorities in response to COVID-19, and to ensure a safe and secure environment for POGO staff, clients and partners, all POGO staff continue to work remotely and POGO’s office at 480 University Avenue remains closed until further notice. During this time, POGO staff can be reached by email. Please refer to the POGO Staff List.
POGO School and Work Transitions Program Continues to Operate
POGO Counsellors are dedicated to supporting their clients through this challenging time and The POGO School and Work Transitions Program is continuing to operate with some modifications. POGO Counsellors are available by phone, Zoom or email as follows:
- In most cases, POGO Counsellors will not be travelling to their offices so will not have immediate access to all of their resources. This may mean a delay in getting information to you.
- Counsellors and clients can only meet in person in accordance with regional public health safety measures.
- In keeping with hospital directives, POGO Counsellors may not be in attendance at POGO AfterCare Clinics. We ask that you please be patient when awaiting a response following a clinic visit and know that your POGO Counsellor will get back to you as soon as possible.
- Our Survivor to Survivor (S2S) Network Workshops will all be delivered virtually starting in June 2021.
Education Events are Now Virtual
We are excited to be in the midst of planning our 2021 roster of professional development opportunities after postponing our in-person events last year. Multi-disciplinary healthcare professionals can look forward to our 2021 roster of events which will be available in either virtual or hybrid formats.
Donations
The need to raise funds in support of our programs and services is no less great during this challenging time. As always, it is possible to make a secure, online donation to Pediatric Oncology Group of Ontario at this link. Thank you for your consideration.
Date of last update: March 2020
Parent-Child Communication When a Child Has a Life-Threatening Illness
An interview with Eric Bouffet, MD, FRCPC and Ceilidh Eaton Russell, PhD(c), CCLS
A Swedish study published in 2004 looked at 429 parents who had lost a child to cancer and asked the questions: Did you talk to your child about the fact that they were going to die? If so, or if not, do you regret your decision? Although only 147 parents had that difficult conversation with their child, none of them regretted it, while 27% of parents who did not talk with their child about death regretted not doing so.
In 2018, POGO issued a seed grant to principal investigator Dr. Eric Bouffet and co-investigators Ceilidh Eaton Russell and Dr. Adam Rapoport to interview parents and children in order to learn how they talk together about the child’s illness, its impacts on their lives, their feelings and worries, including their feelings about dying if the child’s prognosis is not good.
POGO: What have you seen in your interactions with families who are dealing with a critically ill child?
Dr. Bouffet: What we see in our clinical practice is that while some parents are very open about talking to their child who has cancer, others don’t even want to use that word and they will tell the oncology team, “Don’t tell my child they have cancer.” At the same time, often the child knows and they will say to the child life specialist, or even the therapeutic clown, “I have cancer” or “I know I am going to die,” followed by “don’t tell my parents that I know.” Some children will even talk about when they will get their driver’s license or when they will get married. They are imagining a future they know they might never have, but also, they are trying to comfort their parents. Each party is trying to protect the other, so there is this mutual pretense.
Ms. Eaton Russell: Many parents who are able to talk openly with their child about their cancer diagnosis—even when the prognosis isn’t good and the child is aware they are going to die—often glow when they recount the conversations. They say that the time they spent together was meaningful and that they were able to offer some peace to their ill or dying child. At the other end of the spectrum, there are many families who cannot manage these tough conversations around end of life, and for some of them, when I see them months or even years after their child has died, the angst is palpable.
Related Story : Dying Without a Voice – Communication When a Child Can No Longer Speak
POGO: Your study interviews parents and children. How do you get children to open up about what is happening to them when they might not have the words?
Ms. Eaton Russell: We have this activity book with beautiful illustrations to help kids communicate. They can demonstrate how they feel about what is happening to them or they can tell the story as though it is happening to someone else so it does not feel as threatening. It is very informative for both us and for the children.
POGO: What does this funding mean for your clinical practice? What are you hoping to accomplish with this research?
Dr. Bouffet: It is about quality of life—today, but also for the future of this family and how they will feel when they reflect about the time they spent with their child at what is probably the most intense period of their lives.
Ms. Eaton Russell: I hope we can develop some strategies to help families who are struggling with this topic begin to talk openly with their critically ill child, regardless of the child’s prognosis. It would be great to develop some tools to train frontline staff to encourage families to have these difficult conversations. Potential future research could be piloting workshops for families or piloting a clinical role to work directly with the oncology team and the family to focus on supporting open communication between parents and their sick or dying child.
Dr. Bouffet: Research, particularly in a university or hospital setting, is typically labs, equipment and people who are making fabulous discoveries, but there are also very important needs for the psychosocial aspects of illness. Not all funding agencies are supportive of qualitative research, so this POGO seed grant is fantastic because even if it’s not going to “save lives,” it has the potential to make significant change in the quality of life of the families and patients we treat. I am very grateful to POGO for supporting this type of research; it can have a big impact on our practice.
POGO: What kind of impact has it had on you personally?
Ms. Eaton Russell: Childhood cancer treatment, especially when end of life is a reality, can be such an intimate time and an opportunity for meaningful connections. It is a real privilege to learn from families and to be able to share what I’ve learned to help other families make the most of the time they have together in a different way than they might have otherwise.
Dr. Bouffet: The results of this research can give healthcare providers more confidence when we speak to patients and families about their critically ill child, and so it must be shared. We often “do not have the guts” to tell the truth, but we have learned through our interviews that it is critical for children to be able to talk to someone and share their thoughts and fears. It is also critical for parents to be informed. Much of this knowledge is new and can change our practice.
Dr. Eric Bouffet is a professor of paediatrics at the University of Toronto, Garron Family Chair in Childhood Cancer Research and Head of the Neuro-oncology Section in the Division of Haematology/Oncology at SickKids in Toronto.
Ceilidh Eaton Russell is a researcher trained as a chid life specialist at SickKids and is Director of Research and Evaluation at the Dr. Jay Children’s Grief Centre.
Bruce Power to support Brain Tumour Foundation of Canada, Pediatric Oncology Group of Ontario through Ontario Hockey League partnership for 2019-2020 season
TIVERTON, ON – November 1, 2019 – Bruce Power will continue its sponsorship agreement with the Ontario Hockey League (OHL) for the 2019-20 season by highlighting its support of Brain Tumour Foundation of Canada and the Pediatric Oncology Group of Ontario (POGO).
Through its partnership, Bruce Power will sponsor games in 16 OHL communities during the regular season to raise awareness around Brain Tumour Foundation of Canada and POGO. Both organizations will have an opportunity – through splitting the 16 games - to set up information/awareness kiosks inside the arenas on their respective game nights while the teams will promote POGO, Brain Tumour Foundation of Canada and Bruce Power on its social media channels and through their in-game promotions.
“Since becoming a partner of the Ontario Hockey League in 2017, we’ve been able to work with the league and teams on charitable initiatives that help raise awareness around the important work being done by the Brain Tumour Foundation of Canada and POGO on behalf of cancer patients and their families across Ontario,” said James Scongack, Executive Vice-President, Corporate Affairs and Operational Services. “Supporting these two organizations is an extension of the work our employees are doing in providing the world with medical isotopes that are used every day in the diagnosis and treatment of cancer.”
OHL Commissioner David Branch says the league and its teams share Bruce Power’s commitment to making their communities better places to live through charitable programs.
“The Ontario Hockey League greatly appreciates the work being done by our partners at Bruce Power and their support of these two great organizations that help countless people in our communities,” Branch said. “Cancer impacts everyone and this charitable effort will raise a great deal of awareness league-wide.”
Brain Tumour Foundation of Canada didn’t hesitate to participate in the Bruce Power-sponsored games, having seen an increase in awareness around the organization and its programs with its presence at OHL games last season.
“For 37 years now, Brain Tumour Foundation of Canada has funded brain tumour research while providing the brain tumour community with emotional support, access to accurate information and a connection to others facing this challenging disease,” said Susan Marshall, Chief Executive Officer, Brain Tumour Foundation of Canada. “We’re grateful to Bruce Power, the Ontario Hockey League and its clubs for allowing us to tell our story to hockey fans throughout the province.”
Like Brain Tumour Foundation of Canada, POGO works in several OHL communities and is taking advantage of the opportunity to tell its story to major junior hockey fans.
Each year in Ontario, there are over 4,000 families with a child in cancer treatment or follow-up care. More than 86 per cent of children diagnosed with cancer will survive. Nearly 60 per cent of these survivors will experience complications either due to the disease itself, complex surgical procedures or the rigorous rounds of radiation and chemotherapy they were given during treatment. POGO champions childhood cancer care for now – for life.
“Creative collaboration allows us to work towards a collective goal, and POGO is proud to partner with Bruce Power and the OHL to raise awareness of Childhood Cancer across Ontario,” said Lynn Wilson, Chief Development Officer at POGO.
The Bruce Power-sponsored games begin this evening in Kingston and Kitchener and continue through February 5.
- Kingston Frontenacs - November 1, 2019 (Brain Tumour Foundation of Canada)
- Kitchener Rangers - November 1, 2019 (POGO)
- Mississauga Steelheads - November 17, 2019 (POGO)
- Sudbury Wolves - November 17, 2019 (POGO)
- Oshawa Generals- November 22, 2019 (POGO)
- Barrie Colts - November 23, 2019 (Brain Tumour Foundation of Canada)
- Peterborough Petes - November 23, 2019 (POGO)
- London Knights - December 28, 2019 (Brain Tumour Foundation of Canada)
- Sarnia Sting - January 3, 2020 (Brain Tumour Foundation of Canada)
- Hamilton Bulldogs - January 4, 2020 (POGO)
- Niagara IceDogs - January 9, 2020 (POGO)
- Ottawa 67's - January 12, 2020 (POGO)
- Guelph Storm - January 17, 2020 (Brain Tumour Foundation of Canada)
- Windsor Spitfires - January 19, 2020 (Brain Tumour Foundation of Canada)
- North Bay Battalion - January 30, 2020 (Brain Tumour Foundation of Canada)
- Sault Ste. Marie Greyhounds - February 5, 2020 (Brain Tumour Foundation of Canada)
About Bruce Power
Formed in 2001, Bruce Power is an electricity company based in Bruce County, Ontario. We are powered by our people. Our 4,100 employees are the foundation of our accomplishments and are proud of the role they play in safely delivering clean, reliable, low-cost nuclear power to families and businesses across the province. Bruce Power is also a significant source of Cobalt-60, a radioisotope used for the sterilization of medical equipment around the world as well as a specialized form of cancer treatment called the Gamma Knife. Learn more at www.brucepower.com and follow us on Facebook, Twitter, LinkedIn, Instagram and YouTube.
For more information, contact:
John Peevers – Director, Corporate Communications – 519-361-6583 – john.peevers@brucepower.com
About the OHL
The Ontario Hockey League is a proud member of the Canadian Hockey League which is the world’s largest development hockey league with 60 teams in nine Canadian provinces and five American states. In addition to the OHL, the CHL is made up of the Quebec Major Junior Hockey League and the Western Hockey League. Last season, more than nine million fans attended CHL games in the regular season, playoffs and at the MasterCard Memorial Cup. The CHL supplies more players to the National Hockey League than any other league. Last season 527 graduates attended Canadian Universities on scholarships from CHL teams.
For more information, contact:
Josh Sweetland – Director, Communications – 416-299-8700 – jsweetland@chl.ca
About Brain Tumour Foundation of Canada
Brain Tumour Foundation of Canada is the only national charity offering information and support to patients affected by any kind of brain tumour – be it cancerous, non-malignant or metastases. The organization funds ground-breaking research across North America and, since 1982, has dedicated over $7.2 million to finding a cure and improving treatment for brain tumour survivors. Brain Tumour Foundation of Canada is funded solely through generous contributions from individuals, corporations, organizations, employee groups and special events. Learn more at Brain Tumour Foundation of Canada’s website at www.BrainTumour.ca.
For more information, contact:
Susan Marshall – Chief Executive Officer, Brain Tumour Foundation of Canada –smarshall@braintumour.ca – 1-800-265-5106 ext. 222
About the Pediatric Oncology Group of Ontario
In 1983, a group of passionate and visionary pediatric oncologists founded the Pediatric Oncology Group of Ontario (POGO). Today, inspired by the children and families whose lives we strive to improve, we champion childhood cancer care on behalf of the childhood cancer community. POGO is the official source of advice on childhood cancer to the Ministry of Health; a trusted source of information among colleagues, parents, survivors and the public; and the longstanding leader of a collaboration among the five academic pediatric oncology programs and other stakeholders, which has resulted in a highly integrated childhood cancer system. Learn more at www.pogo.ca and follow us on Facebook, Twitter, LinkedIn, Instagram and YouTube.
For more information, contact:
Jacqui DeBique – Communications Manager – 416-592-1232, ext. 266 – jdebique@pogo.ca
Bruce Power Expresses Support for POGO's Survivorship Initiatives
Tiverton, ON (October 30, 2019) -- Bruce Power announced today that it is fully committed to supporting the Pediatric Oncology Group of Ontario’s initiatives to provide children with cancer, their families, and survivors of childhood cancer, with access to ongoing treatment, care and financial support.
The announcement, made at the MaRS Centre in Toronto, reinforces a $300,000 commitment made by Bruce Power to POGO on February 15 – International Childhood Cancer Day. Bruce Power, a leader in the production of medical isotopes that are used around the world to improve people’s lives, will provide the funding over the next five years as a key element of the company’s Community Investment and Sponsorship Program.
“Our commitment to the people of Ontario crosses many paths,” said Mike Rencheck, Bruce Power President and CEO. “We provide 30 per cent of the province’s electricity at 30 per cent less than the cost to generate residential power. We inject $4 billion into Ontario’s economy every year, and we contribute $2 million annually to grassroots initiatives, events and organizations that improve the lives of children, adults, Indigenous peoples and military veterans.
“The continuing efforts around our production of medical isotopes are heavily focused on working with the medical community and other partners to find new ways for treating cancer. We share the values of POGO in providing state-of-the-art care to those afflicted with cancer in their childhood years, and doing what it can for families dealing with this life-changing diagnosis.”
One program supported by the Bruce Power funding is POGO’s school and work counselling service for childhood cancer survivors (SAVTI). POGO launched this program in 2002 to address a significant gap in survivor care, helping survivors, aged 16 plus, with neurocognitive challenges receive the necessary support to set and attain realistic educational and employment goals. POGO provides one-on-one counselling tailored to a student’s medical past and subsequent cognitive profile to help them bridge the gap between high school and whatever comes next for that student. POGO counsellors, specialists in their field, support clients in London, Hamilton, Toronto, Ottawa, Kingston and the surrounding areas. Together with neuropsychologists, they also help young people identify and access the accommodations they need, connect to resources in the community, and receive guidance to empower them to become self-advocates at school and at work. POGO counsellors provided services to over 400 cancer survivors last year.
“Bruce Power’s multi-year commitment provides stable funding that will allow us to plan long-term for initiatives that support childhood cancer survivors, as well as Ontario families with children in cancer treatment,” said Jill Ross, POGO’s CEO. “Our work with community partners like Bruce Power, who share our commitment to helping people deal with cancer, plays an important role in ensuring a high-quality, safe and coordinated system of care that addresses both their physical and emotional well-being.”
“In addition to being the backbone of our province’s energy system, Bruce Power is now also an important partner in Ontario’s health care system, producing life-saving medical isotopes and providing financial and other supports to help fight childhood cancer,” said Bill Walker, MPP, Bruce-Grey-Owen Sound and Associate Minister of Energy. “I commend your commitment and look forward to the great work from your new partnership with the Pediatric Oncology Group of Ontario.”
About Bruce Power
Formed in 2001, Bruce Power is an electricity company based in Bruce County, Ontario. We are powered by our people. Our 4,100 employees are the foundation of our accomplishments and are proud of the role they play in safely delivering clean, reliable, low-cost nuclear power to families and businesses across the province. Bruce Power is also a significant source of Cobalt-60, a radioisotope used for the sterilization of medical equipment around the world as well as a specialized form of cancer treatment called the Gamma Knife. Learn more at www.brucepower.com and follow us on Facebook, Twitter, LinkedIn, Instagram and YouTube.
About the Pediatric Oncology Group of Ontario
In 1983, a group of passionate and visionary pediatric oncologists founded the Pediatric Oncology Group of Ontario (POGO). Today, inspired by the children and families whose lives we strive to improve, we champion childhood cancer care on behalf of the childhood cancer community. POGO is the official source of advice on childhood cancer to the Ministry of Health; a trusted source of information among colleagues, parents, survivors and the public; and the longstanding leader of a collaboration among the five academic pediatric oncology programs and other stakeholders, which has resulted in a highly integrated childhood cancer system. Learn more at www.pogo.ca and follow us on Facebook, Twitter, LinkedIn, Instagram and YouTube
POGO CEO Reflects on The Childhood Cancer Care Plan One Year After Launch
Q. Looking back on the past year, which accomplishments stand out for you?
The Childhood Cancer Care Plan was developed by over 200 clinical experts, providing care in clinics and at the bedside day in and day out, as well as parents and survivors, system planners and administrators. It has been wonderful to see many of these same individuals along with new participants readily volunteering their time, expertise and experiences to committees and activities that will drive action on the Plan’s goals.
That said, two other items that particularly stand out, are the launch of the newest POGO Satellite Clinic at Peterborough Regional Heath Centre in fall 2018, bringing care closer to home for patients and their families in that part of the province, and the publication of the latest, high-quality Ontario data in Childhood Cancer in Ontario 1986–2015: A Surveillance Report.
Q. The Plan identifies the need for Champions. Describe how Champions have come on board to help implement the Plan.
The Childhood Cancer Care Plan is a system plan. In addition to POGO, it will take the collaborative efforts of survivors, patients and families, clinical care providers of all types, government, donors and others to achieve its goals. An excellent example of this collaboration is POGO’s work on the Plan’s strategic objective to “promote effective and appropriate care for adolescents and young adults (AYA) treated in all settings.” Adolescents and young adults have unique care needs that require us to bring the best from the childhood and adult cancer care systems.
This year, Champions from across the province—clinical specialists from the POGO network and from Cancer Care Ontario’s adult cancer programs, and survivors of AYA cancer, with the support of the Ministry of Health—have joined forces to identify actions that can be taken to improve care.
Q. Specialized donor-funded support for families, research and survivors is a key driver of the Plan’s success. How has the contribution of donors contributed to moving the goals of the Plan forward?
One of the Plan’s five major goals is to optimize the physical health and emotional well-being of survivors of childhood cancer. Survivors have told us that they are in need of practical and informational resources to help them cope with life after a diagnosis of childhood cancer. With the generous support of an anonymous donor to launch a new initiative and continued funding from The W. Garfield Weston Foundation, POGO has been able to enhance our counselling service for adolescent survivors facing challenges completing school and finding work by introducing the Survivor to Survivor (S2S) Network. With the S2S Network, survivors gain practical skills, build their confidence and connect with others, as they create and deliver informational workshops on key issues for fellow survivors. Feedback from participants so far has been outstanding.
Check out S2S workshop topics and hear from
S2S facilitators about their experience
Donors to POGO also support important research aligned with the Plan’s goals.
Q. This is a provincial plan intended to deliver the best possible care for the best possible outcomes for families, young people with cancer, survivors. What tangible differences are already evident for this population?
The POGO network has been working effectively together to continuously improve the system since POGO created the first Provincial Pediatric Oncology Plan (the Plan’s former name) in the late 1980s. Ontario’s outcomes are among the best in the world. Overall survival from childhood cancer is at an all-time high of 86%.
For children facing a diagnosis of cancer, in alignment with the Plan’s goal of “equitable, appropriate and timely access to emerging and evolving oncology drugs, diagnostics and technologies,” POGO ensures pediatric cancer expertise informs new drug funding policies and continues to lead the process to enable access to the latest collaborative clinical research studies for Ontario’s children facing cancer. POGO’s Therapeutic and Technology Advisory Committee of experts from across the province is now in place to continually scan the new science for opportunities to enhance care in Ontario.
Work also continues to enhance long-term outcomes for survivors of childhood cancer. Most survivors need lifelong monitoring to ensure that the late effects of their disease and its treatment are managed in such a way as to ensure the best quality of life possible. Survivors need reliable access to high quality primary and specialty care but, too often, access to primary care is a challenge. POGO’s Integrated Provincial AfterCare Steering Committee, composed of clinical and survivor representatives, aims to connect each survivor with a primary care provider in their home community and to ensure that primary care providers and the cancer specialists work effectively together to provide optimal monitoring.
Q. When we look ahead one year from now, what are some immediate priorities arising from the Plan?
While our clinical outcomes in Ontario are excellent, there are other important outcomes that need concerted attention. In particular, we hear from the clinical team and parents alike that the Plan’s goal about “ensuring integrated psychosocial care,” and objectives to “enhance supportive care” and “meet educational and information needs” are particularly challenging.
POGO’s guidelines program ensures that Ontario has excellent, internationally recognized, evidence-based supportive care guidelines, but more needs to be done to ensure that the recommendations in those guidelines can be put into day-to-day practice. The benefit of guidelines is real; a US children's hospital, for example, saw a significant decrease in patient vomiting after implementing the POGO guideline for prevention of chemotherapy-induced vomiting. POGO is committed to working with our partners to facilitate evidence-based guideline uptake.
While we made an excellent start this past year, we also have more work to do to meet the Plan’s goal of ensuring “the right data are available and being used to drive an effective childhood cancer system.” We are working with hospital partners to give them the data they need to monitor quality and do local planning, and in turn, contribute to strong province-wide planning. We will also be updating the POGO Surveillance Report this year, and we are working with data partners to improve the information available about AYA cancer.
Most importantly, we look forward to strengthening existing partnerships and developing new ones with organizations that can help advance the Plan’s important goals for childhood cancer patients, families and survivors.
Identifying Increased Risk for a Cancer Predisposition Syndrome
This POGO-funded research is helping children with its early detection of cancer predisposition syndromes.
Approximately 10% of children diagnosed with cancer have an underlying cancer predisposition
syndrome (syndrome), a condition (often inherited) that increases their risk of developing one or many cancers throughout their life. Genetic testing can be used to identify children with a syndrome, but to avoid unnecessary testing and possible delays, physicians need a way to determine which children to test.
There are over 125 syndromes known to be associated with cancer in children. In some cases, knowing whether a child has a specific syndrome will change the treatment. Identifying a syndrome also allows the healthcare team to develop a care plan to monitor the child for future cancers once treatment is complete, and to recommend monitoring for siblings.
In 2017, Dr. Catherine Goudie was awarded a POGO fellowship for her project “Identifying Children at Increased Risk for a Cancer Predisposition Syndrome: The McGill Interactive Pediatric Oncogenetic Guidelines.” Overseen by principal investigators Dr. David Malkin and Dr. William Foulkes, the project aims to develop an e-Health tool that doctors can use to help them decide which children should be referred for genetic testing.
Related Story : A Genetic Mutation: A Lifetime of Cancer Screening
Prior to becoming a POGO Fellow, Dr. Goudie and her team in Montreal spent three years building
approximately 90 algorithms for each type of childhood cancer. These yes/no questions relate to
items such as the age of the child, features of the tumour and family history. The first version of the
tumour algorithms was reviewed by genetic and oncology experts from Canada, the United States
and the United Kingdom.
The aim of the POGO-funded research was to support Dr. Goudie in her work to evaluate the performance of the tool with children at 11 Canadian hospitals. The evaluation was split into two streams.
“Our first priority was making sure this tool would do no harm,” says Dr. Goudie. “In order to do this, we looked at patients in Canada who have already been diagnosed with a cancer predisposition syndrome and who developed a cancer in childhood, meaning their physicians successfully identified the syndrome without our tool. We confirmed that our algorithms would have identified these children for genetic referrals at the time of their cancer diagnosis, therefore confirming that the tool performs at least as well as clinicians have.”
The second stream of the evaluation is ongoing and leverages precision medicine research at The Hospital for Sick Children and other hospitals in Canada and the US. These institutions are doing comprehensive genetic sequencing on pediatric cancer patients, meaning that all children undergo genetic evaluation regardless of whether they are suspected to have a syndrome.
“We will test our algorithm on the medical profiles of these children to determine if the tool indicates that the child should be referred for genetic assessment. We will then compare our results with those obtained from the patients who participated in the comprehensive genetic sequencing. Therefore, we are prospectively testing the performance of our tool.”
Dr. Goudie explains that, in most hospitals worldwide, the facilities, human resources, infrastructure, expertise, or funding to offer comprehensive genetic testing in all kids diagnosed with cancer are not available. Ultimately, the goal of the tool is to give children with a syndrome the opportunity to be diagnosed and treated appropriately. In addition, the tool can be used to educate medical professionals around the world.
Dr. Catherine Goudie received a prestigious clinical investigator award from the FRQ-S in Quebec and returned to Montreal in July 2018 to continue this research as a collaboration between the Montreal Children’s Hospital and The Hospital for Sick Children. The FRQ-S is a government organization that, annually, funds select clinician investigators in Quebec to do health research.
“For someone young like me, who doesn’t have a lot of experience, having POGO to support my work was a huge stepping stone. I am certain that POGO’s support and the credibility that this organization has internationally, helped me get this next award in Quebec. I am really grateful for this opportunity.”
This story was featured in POGO's 2018 Community Impact Report.
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