POGO Supportive Care Guidelines Influence the Care of Children with Cancer
The POGO Supportive Care Clinical Practice Guidelines Program provides healthcare professionals in Ontario and worldwide with the best options for managing the side effects of cancer and improving the health and quality of life of children with cancer. These Guidelines translate the current evidence into recommendations for daily clinical practice. For example, in POGO's most recent guideline on managing fatigue (published in the medical journal Lancet Child & Adolescent Health), physical activity is strongly recommended as a way to help ease this common and distressing symptom. It further recommends that physical activity should suit each patient’s specific needs, likes and abilities. The POGO Guidelines team based this recommendation—one of four—on research with adults that showed the consistent benefit of physical activity, and the universal availability, low risk of harm and low costs of fitness options. The fatigue guideline was developed by a multidisciplinary and multinational group of experts, together with childhood cancer survivors.
More about Supportive Care Clinical Practice Guidelines
Supportive care helps manage cancer’s side effects
Supportive care is the prevention and management of the adverse effects of cancer and its treatment, which means managing the side effects of cancer and cancer treatment. Supportive care includes preventing and treating infections, reducing nausea and vomiting, as well as managing psychosocial issues, including depression, anxiety, and caregiver distress.
Clinical Practice Guidelines improve outcomes
Guidelines provide a way of translating evidence into clinical practice. Across clinical specialties, treatment according to guidelines has been shown to improve outcomes. Providing evidence-based supportive care for healthcare teams has the potential to optimize treatment outcomes, reduce suffering, and improve the quality of the cancer treatment journey for children with cancer.
POGO’s Clinical Practice Guidelines are internationally endorsed
In its short duration, the POGO Guidelines Program has been extremely successful. In addition to the newly released management of fatigue guideline, POGO has published six Guidelines. Five have been endorsed by the Children’s Oncology Group (COG). This means that links to the guideline recommendations are now embedded into the COG’s trial protocols. Endorsements by other organizations, nationally and internationally, include the Canadian C17 Network, the American Society of Pediatric Hematology/ Oncology and the Multinational Association of Supportive Care in Cancer.
POGO’s Clinical Practice Guidelines fill a void
POGO’s Clinical Practice Guidelines are incredibly important for healthcare teams because very few evidence-based supportive care guidelines exist that specifically focus on children with cancer. POGO’s Guidelines are informed by parents who rank the treatment-related adverse effects as most severe and concerning to their children, and by pediatric oncology healthcare providers who have identified topics for which guidance is most needed.
Read all of POGO’s clinical practice guidelines
POGO Celebrates Pediatric Oncology Nursing Excellence with Bruna DiMonte
"Excellence in oncology nursing is about demonstrating a high level of compassion, empathy and pediatric oncology specialty expertise in caring for kids with cancer and their families. Nurses incorporate evidence-based literature and research in our clinical practice, and we are excellent resources to allied health teams and the field of pediatric oncology. We advocate for resources to meet the challenging needs of kids with cancer, families, pediatric oncology nursing and the childhood cancer care system."
Data Drives Practice
These days, my work at SickKids overlaps with my data management role at POGO. In both organizations, I lead teams responsible for capturing data in our POGONIS database. This data—clinical information that includes specifics about children’s diagnosis, treatment, complications and long-term outcomes—is used by POGO and our system partners for cancer surveillance, research, decision-making, system and program planning and evaluation, and policy advice.
Her Passion for Her Patients and Work as a Pediatric Oncology Nurse
My early career was devoted to working on the frontlines and in doing so, I always strived to provide compassionate care to kids with cancer. While it’s hard to choose, I would say that one of the most rewarding things was finding time in my day to play with a child and distract them from the complex cancer treatment I still had to provide. Every day brought a new set of challenges and however a child’s story played out, my only hope was that I had made a positive difference in their life and their family’s.
POGO Values Pediatric Oncology Nurses
I have had the pleasure of helping POGO support pediatric oncology nurses in making valuable contributions to the pediatric oncology community. I am the staff representative on the POGO Nursing Committee and have worked with Committee members on such special projects as POGO guidance documents about telephone practices (telepractice) and the safe handling of antineoplastic agents. The Committee has also had the opportunity to contribute to publications, abstracts, presentations at conferences of health organizations like the Association of Pediatric Hematology/Oncology Nurses (APHON), The International Society of Pediatric Oncology (SIOP), and POGO education events like AfterCare Education Day, the Annual Multidisciplinary Symposium on Childhood Cancer and Nursing Pre-Symposia education events. Through POGO, pediatric oncology nurses also have the opportunity to advocate on a policy level, and in the past actively supported POGO’s recommendation of the nurse coordinator position and acquisition of the Interlink Nursing program. POGO also proactively seeks preceptorships with nursing student placements at the POGO office and with the POGO Interlink Nurses at their hospitals.
Other Career Achievements of which Bruna is Most Proud
This is another difficult question as I have had many wonderful opportunities to support novice pediatric oncology nurses, as well as data managers and researchers. I hope I have helped empower others to provide excellent clinical care. And, in collaborating with researchers using POGONIS data for epidemiological research and data analysis, I hope I have adequately supported their policy planning and program development goals for pediatric oncology, and inspired them to collect accurate provincial population data for these needs.
Bruna DiMonte, RN, BScN, has been a pediatric nurse for 36 years and has spent 28 of those working double duty at The Hospital for Sick Children (SickKids) in Toronto and with POGO as the Senior Database Administrator and Privacy Officer
Pediatric Oncology Social Workers and Kids’ Cancer Care
We sat down to chat with Jane Cassano, MSW, and Cindy van Halderen, MSW, about the role pediatric oncology social workers play in the care of children with cancer and their families. Jane is a past member of POGO’s Psychosocial Services Committee and Cindy is a past co-chair of that committee and former member of POGO’s Board of Directors. They work together at McMaster Children’s Hospital in Hamilton. Here’s what they shared.
Describe the role of a social worker and the specific practice of a pediatric oncology social worker. Social workers are skilled at assessing and helping individuals, couples and families who are faced with a variety of challenges. The social work role can be found in hospitals, mental health clinics, schools, child welfare and community service agencies, and private practices.
Pediatric oncology social workers are heavily involved in supporting children, and their families, facing both a cancer diagnosis and the demands of treatment. Ideally, we meet a family at diagnosis so that questions and concerns can be addressed from the outset. Some of the early interventions include assistance with employment issues and applying for benefits, and making referrals to community partners, like POGO for the POGO Financial Assistance Program. Throughout the cancer journey, we provide emotional support and counselling, and monitor how the child and family are coping. We also provide resources for any family member who may be struggling, especially siblings.
What difference do you think social workers make in the lives of kids with cancer and their families? Parents have identified that having a social worker has eased the burden of managing applications for government funding, employment benefits and community resources. There are many programs available in Ontario to support a child with cancer and their family, and they can be difficult to navigate. Social workers are skilled at liaising and advocating with community partners. Parents have said it is a relief to have someone who has knowledge about what is out there and can help them navigate it all.
In such a rapidly evolving field, how do pediatric oncology social workers stay current about the issues of childhood cancer?
Pediatric oncology social workers stay in close contact with community partners like POGO. Ongoing training and education through POGO keep us and our colleagues at other Ontario hospitals up to date with current practices and standards. Through POGO, we have a voice at the provincial level, working as part of a multidisciplinary team to ensure pertinent psychosocial issues are addressed and acted on.
They say, “teamwork makes the dream work.” How is that true for pediatric oncology social workers and POGO? Pediatric oncology social workers and POGO work hand in hand, especially when it comes to the POGO Financial Assistance Program. Families often experience financial distress when their child is diagnosed with cancer. Many parents need time off work and they lose income or there is a major gap before supports begin. Many families are travelling from a distance, which creates a financial strain. Some benefits of the POGO Financial Assistance Program are that it provides stays at Ronald McDonald House and pays for child care for siblings. This support is provided immediately, which is when the need can be the greatest. Families have told us this has made a world of difference.
Culturally Competent Healthcare Focus of New Pediatric Oncology Course
POGO works to provide the best care possible for all of Ontario’s children with cancer, in part, by identifying gaps in childhood cancer care. In recent years, a POGO priority has been to focus efforts on enhancing culturally relevant care for Indigenous children, as Indigenous families often face barriers to culturally appropriate healthcare.
POGO’s focus has been on building relationships, identifying current opportunities to improve the care of Indigenous children with cancer as well as opportunities that might result in a more efficient system, and assembling the expertise needed to assess the issues, gaps and advances anticipated.
In 2017, POGO collaborated with Cancer Care Ontario to launch Pediatric Oncology, a new course in the recently refreshed series of Indigenous Relationship and Cultural Awareness courses offered by Cancer Care Ontario. These courses provide frontline healthcare professionals with knowledge about the history and culture of First Nations, Inuit and Métis people and communities and guidance on how to provide culturally appropriate, person-centred care.
POGO and Cancer Care Ontario know that cultural safety is a critical component for improving patient experiences and outcomes. Through video and text, the Pediatric Oncology course examines the differences between childhood and adult cancer, one family’s experience of the journey for Indigenous children with cancer, and the role POGO plays in helping to navigate this journey with a unique whole-life approach to childhood cancer care told from the frontline experience of a POGO Interlink Community Cancer Nurse.
The 13 Indigenous Relationship and Cultural Awareness courses are ideal for healthcare providers, those working with Indigenous people, and anyone who wants to better understand Indigenous history and culture. The courses are interactive, free of change and open to anyone. Each course in the Self-Learning program has been certified by the College of Family Physicians of Canada for Mainpro+ credits.
Indigenous Relationship and Cultural Awareness Courses
Watch the video featured in Pediatric Oncology
Raising a Child with Cancer as a Single Mom
My daughter Adaejah has always been a happy little girl—active, curious and very lovable. The fact that she was born with Down syndrome did not affect that. The fact that she had cancer did not change that.
The events that led to her diagnosis took place over a few months. Adaejah started at a school for children with disabilities when she was two years old. She developed a cold in September that had not subsided by December. She stopped eating and a cut over her forehead just would not heal. Multiple visits to our local hospital didn’t get us any closer to understanding what was going on, but within 45 minutes into an emergency visit at The Hospital for Sick Children, we found out she had leukemia. Adaejah was admitted immediately.
I was completely disoriented for a few days. The hospital connected me to a social worker to help me understand what was going on. My beautiful baby girl needed to go through several rounds of chemotherapy; she would not be coming home for six months; I could not go back to work because I needed to be at the hospital full-time; and I had to figure out how to manage as a single mother with two other kids at home.
I got a leave of absence from my job and received Employment Insurance (EI) benefits for parents of critically ill children. It wasn’t even the same as my salary when I was working, but I still had to buy food for myself and pay the bills at home. My 17-year old daughter became the caregiver to my seven-year old daughter while I lived at the hospital with Adaejah. When a child gets cancer, it impacts the whole family and how you go about things day to day. It was a huge adjustment for my kids and me.
We thought we were out of the woods when they finally sent us home. But complications of all kinds followed. Adaejah developed septic shock and kidney failure and had to receive dialysis. She relapsed and received a bone marrow transplant from a cord donor. During her second hospital stay, everything we owned was destroyed by a house fire and smoke damage. For several months after we were released from the hospital, we lived in transitional housing because we could not return home while Adaejah’s immune system was so compromised.
While I have family in Toronto, I did not get a lot of support from them during this time. I don’t even know if I can call them family anymore. I am very grateful to the friends who helped me when they could, to the hospital, and to Tina, my POGO Interlink Nurse, who has gone above and beyond. Tina connected me to so many resources, including donations during the holidays, special subsidies that helped pay the rent, and the POGO Financial Assistance Program that helped me with food and childcare. She has worked through my EI applications with me and helped to reintegrate Adaejah back into her special school.
We are not out of the woods yet. Adaejah is being monitored closely because her blood count is low. When she is able to travel, my hope is that we can all make a trip to Jamaica to see where I am from.
Ashmara was married recently and gave birth to her fourth child, Jeremiah. She is looking forward to going back to work and wants to move into a different neighbourhood to provide a better home for her family.
How Can We Improve Control of Chemo-Induced Nausea and Vomiting?
In a survey supported by POGO, chemotherapy-induced nausea and vomiting was identified as one of the top concerns of parents of children receiving chemotherapy. The antiemetic aprepitant—a relatively new and effective drug used to prevent these distressing side-effects in patients receiving chemotherapy—is only available in capsule format in Canada, so children who cannot swallow capsules cannot benefit from this medicine in its current form.
When a liquid form of a drug is not commercially available, pharmacists often manipulate dosage forms that are made for adults so that children can take those drugs. They do this by breaking up capsules or crushing tablets to make a liquid formula that children can swallow. This is called extemporaneous compounding. Some drugs become unstable as soon as you mix them with a liquid. In other words, they degrade so rapidly that the liquid forms are not useful; others might get absorbed into the bloodstream too quickly or not at all. Ideally when a pharmacist makes an extemporaneous compound, they use a formula or a recipe which has been studied so we know the drug’s stability. Even better is to understand how the extemporaneous liquid formulation is absorbed from the stomach into the bloodstream compared to the original tablet or capsule made by the pharmaceutical manufacturer.
In 2016, POGO awarded Dr. Priya Patel, RPh, PharmD, a MSc student with a Clinician Scholar Fellowship for her project: Relative Bioavailability of an Extemporaneous Oral Suspension of Aprepitant in Healthy Adult Volunteers. Priya, her supervisor Dr. Lee Dupuis, and their co-investigators Dr. Paul Nathan, Ms. Sue Zupanec, Ms. Jocelyne Volpe and Mr. Scott Walker, will be studying a liquid form of aprepitant designed for use in pediatric cancer patients to determine how well it is absorbed from the stomach into the bloodstream compared to the original capsule. This study will either give the current “recipe” a stamp of approval or help define what needs to be done to ensure that its performance is comparable to what we see in patients who are able to take a capsule format.
POGO is recognized as a world leader with regards to the topic of chemotherapy-induced nausea and vomiting in children. In addition to supporting research studies like Priya’s and creating new evidence around the topic, POGO leads in the development of clinical practice guidelines* to help physicians make informed decisions to optimize control of chemotherapy-induced nausea and vomiting for their pediatric patients. Until recently there were no clinical practice guidelines that focused on children for this purpose.
It’s all about creating new evidence-based information so it can be incorporated into the current practice guidelines and then implementing those guidelines so that children don’t experience nausea and vomiting due to chemotherapy. We are trying to get better at that.
*Endorsed by the Children’s Oncology Group, the world’s largest organization devoted exclusively to childhood and adolescent cancer research.
From Community to Tertiary Hospital, POGO Satellite Manual Helps Ensure Equitable Care
Sylvie Roberge is the Pediatric Oncology Satellite Nurse Coordinator in the POGO Pediatric Oncology Satellite Clinic at the Northeast Cancer Centre, Health Sciences North, Sudbury. She shares her insights on the importance to her practice of the POGO Satellite Manual. POGO Satellite Clinics are located in eight Ontario communities and provide some aspects of a child’s cancer care closer to home.
Q. How does the Satellite Manual impact patient care?
Sylvie: The POGO Satellite Manual directs Satellites in the day-to-day care of our patients/families by providing clear, best-practice documents in such areas as chemotherapy delivery, management of supportive care issues and palliative care. It guides healthcare professionals (HCPs), ensuring that families who are eligible for some of their care in the Satellite setting can safely receive high-quality care in their community comparable to that received in tertiary hospitals. The POGO Satellite Manual is a great tool for both for in-patient units and outpatient clinics.
Q. What difference does the Satellite Manual make in your job?
Sylvie: The Northeast Cancer Centre uses the POGO Satellite Manual as a reference in the development of our hospital guidelines, standards of care, and policies and procedures. The Manual also provides standard communication tools that can be downloaded for use between Satellites and tertiary centres so that all required information is shared between institutions in a timely, organized manner. Again, this facilitates the seamless, comprehensive delivery of services to our patients. The Manual also includes tools for Satellites to use in their annual report to POGO. This ensures that POGO receives the required data from the Satellites for its reporting to the Ministry of Health for data collection and research.
Q. What should families know about the necessity of the POGO Satellite Manual in the delivery of pediatric cancer care in the community?
Sylvie: The POGO Satellite Manual is an important tool that enables HCPs to keep pace with the rapidly advancing field of pediatric oncology. The content is regularly reviewed and updated in collaboration with HCPs in tertiary and Satellite centres to ensure that care in both settings is guided by the same principles. Families can be reassured that best-practice guidelines are being followed in their Satellite, much like in their tertiary centre, and that the standard of care is equivalent.
Q. How has the change from a binder and downloadable PDF to a web-based format improved the Satellite Manual?
Sylvie: This new format, including the removal of password protection, has made the information more accessible to HCPs in all settings, outpatient as well as in-patient. Physicians can now refer to the Manual from home, on any device, whenever they need to find information on a particular topic. The online Manual is easy to locate on the POGO website, user-friendly and the information is clear and well organized. This format also allows for easy updating of individual sections of the Manual.
The POGO Satellite Manual is a resource for healthcare teams working in the POGO Provincial Pediatric Oncology Satellite Program.
In Loving Memory of Susan Grace
From POGO employee to POGO volunteer, Susan Grace was a true champion of kids with cancer and their families. On May 4, 2017, Susan lost her own personal battle with breast cancer.
In 1992, Susan started her journey with POGO as an administrative assistant. Over the years, she was the mainstay for POGO, performing such other roles as receptionist, office manager, controller, assistant to the executive director, publicist, event planner, project manager, and even dish washer! She saw POGO grow from just two employees to its present staff of about 60. Susan worked tirelessly weekdays and many weekends and met every deadline with a smile.
Susan was diagnosed with breast cancer in 2003, and after treatment and surgery, went into remission in 2004. In spite of her diagnosis, Susan considered herself very fortunate and made the most of every day thereafter.
In 2004, Susan received the POGO Companion Award which recognizes those who have made a prolonged and enduring, exceptional and sustained commitment to advancing state-of-the-art childhood cancer control.
Susan returned to POGO in June 2005 until March 2006 as the temporary controller until the organization filled the position permanently.
In June 2006, after 15 years with POGO, Susan resigned and began her second career with POGO as a volunteer. Susan's overall contributions to POGO are invaluable and include work on POGO's annual staffing study, infrastructure improvements, and POGO's legacy database tracking milestones in the organization's history.
A volunteer par excellence, some of Susan's happiest days were at St. Bartholomew’s Church in Regent Park (Toronto) where she volunteered in the early-morning Breakfast Program from 1987 until recently. When Susan and her husband relocated to Alcona, on the shores of Lake Simcoe, she refused to even contemplate giving up the Breakfast Program and would rise early every Thursday morning, leaving the house at 3:10 a.m. for the drive into Toronto, arriving at the church by 4:30 a.m. to open the doors and welcome all who were waiting. From there, she would make her way to volunteer at POGO.
A lover of life, Susan was a cheerful, positive and optimistic person, always with a ready smile for everybody.
When Susan relapsed in December 2015, she faced this new challenge with the same positive attitude, truly believing that she was going to once again beat the disease. She was determined to meet her life goals, which included more travel, selling her dream home on Lake Simcoe and settling into a new condo in Toronto.
Susan Grace is a POGO Champion who made lasting, behind-the-scenes contributions that will forever endure across the childhood cancer community and system.
POGO Interlink Nurse Marilyn Cassidy Wins Caregiver Award
POGO Interlink Nurse Marilyn Cassidy is a recipient of a 2017 Canada Cares Professional Caregiver Award. In the 42 years that Marilyn has been a nurse, she has worked at CHEO for 24 of those years and has championed childhood cancer care as a POGO Interlink Nurse at CHEO for 19 years.
According to Marilyn, "One of the things I love most about my work is the daily opportunity and challenge of trying to make the difficult journeys for patients and their families even just a little bit easier in my role as a POGO Interlink nurse, as well as the definite privilege of working with the most amazingly resilient children and their families. I am probably most proud of the CHEO Buddy Program, Quality in the Community, that we have developed over the years. The program is supported by Camp Quality and we partner with the University of Ottawa medical students to provide buddies for approximately 20 patients per year. This program has brightened the days of so many of our patients, provides respite for parents and provides med students, our future physicians, with a wonderful perspective on the family experience during treatment."
Marilyn's nominators had this to say:
Marilyn is compassionate, her work is knowledge based, family centred and highly principled and she enriches each of us who are given the opportunity to work with her.
Marilyn’s work with the Interlink team involves advancing the quality of life for children with cancer and their families and forging diverse community partnerships including social services, parent groups and schools. She has been involved relentlessly in school support and reintegration for children and their siblings.
She has been a mentor to many over her 40-year nursing career, including nursing and medical students; preceptorship and teaching to the greater health care community with in-services, presentations and involvement in pediatric oncology research.
Families from CHEO who come to Toronto for care praise her gentle, kind, knowledgeable work. Families come prepared and supported and remain connected to her while they are away from their principle treatment centre. She is respectful and flexible and has an innate ability to understand the nature of being a child with cancer, a parent watching their child go through treatment, and the sibling who often feels left out. She goes above and beyond, advocating for families on a personal and community level, helping drive provincial policies.
Her work with POGO highlights her ability to see the big picture and her committee work is the driving force that keeps the work moving along. She identifies needs and gaps and works to find resources and supports to fill the gaps. Currently, she is involved in several initiatives in POGO’s Provincial Pediatric Oncology Plan that advances the existing childhood cancer system.
As her POGO Interlink colleagues, we value her ability to think outside the box and therefore advocate beautifully for the oncology patients. Her wisdom and drive not only benefit her patients but all children with cancer in Ontario.
Marilyn has so many qualities but I think her main strengths are sustained energy, creativity and a drive to never stop improving service to patients, families and the community. She is a natural leader, leading by example for us all to benefit. Marilyn is exceptional! I cannot think of a better person to aspire to and to acknowledge in this way.
Sally Casey
POGO Interlink Team Leader
Lessons Learned in my Practice
In November 2016, POGO welcomed Dr. David Hodgson as its new Medical Director and Chair in Childhood Cancer Control. Here are Dr. Hodgson's remarks on the occasion of his welcome reception at the University of Toronto's Massey College.
In the summer of 1989 I came to the Associate Dean’s office, about 800m from here, for my medical school admissions interview. At that time, admissions interviews were done after the med school applicants had already accepted, so the stakes were low.
We discussed undergraduate experience, my hopes for medical school, and after about 20 minutes, the Dean asks me, “Are you excited about going to medical school?” I said, “Sure, why do you ask?" He replied, “Well you don’t look very excited.” I told a friend in grad school about this and he said I should have answered, “Are you excited about being Dean?” But I didn’t say that, which in part is why I’m here today.
I learned a lot in medical school, but of course many of the most important lessons were learned afterward, and two in particular I’ll mention today.
Only after some time in practice did I learn the first lesson, which was to appreciate how scared our patients and their families are. The writer James Hollingsworth wrote, “Courage is not the absence of fear, but rather the judgement that there is something more important than fear.”
And what greater fear could there be than to have what one values most – one’s life, or even more so the life of one’s child - taken away? Imagine how it feels to give a group of strangers permission to surgically remove parts of your child’s body, irradiate them, and give them so much chemotherapy that their bone marrow is wiped out, saved only by a plastic bag of stem cells kept in a freezer. But every day we have the privilege of helping families who give us permission to do exactly that, with incredible courage, because they work towards something more important than their fear: a normal healthy life for their child.
The second lesson is that it’s harder than I expected it would be to be a good doctor; to consistently provide high quality care. Now, fortunately, we work in a system that for the most part facilitates good care, and one only needs to talk to our counterparts around the world to see how lucky we are to work where we do.
But our knowledge is incomplete, our treatments imperfect, our resources limited, and we battle inefficiencies and bureaucratic absurdities that can wear us down. Too often we are not able to deliver the healthy life that our patients and their parents hope for.
That is why the work of POGO, in collaboration with the tertiary care centres and satellite clinics that make up the pediatric oncology system, is so important. Work to roll out new treatments in a timely and equitable way, to provide financial support for families being crushed by out-of-pocket costs, to offer academic and vocational support for survivors to succeed long after treatment is over, and to conduct research to further improve system performance. This is critical work that POGO does that benefits patients for sure, but make no mistake, also benefits everyone in this room trying to reduce the burden of childhood cancer care in Ontario.
So I’d like to say that I am very excited to do my part to help with this important work – work that strives to be worthy of the courage of our patients and their families, and that allows us to provide the kind of care we aspired to give when we started school.
And Dean Young, just so you know: this is what it looks like when I’m excited, in case you didn’t recognize it.
-- Dr. David Hodgson, POGO Medical Director and Chair in Childhood Cancer Control, November 28, 2016
Read more about Dr. David Hodgson
