Vanessa Burgess Presentation Description:
Research has shown that infants and toddlers who were treated for cancer will achieve their developmental milestones later than their healthy peers will. According to the NIH (Bornstein et al., 2012), vocabulary, cognitive functions and motor skills progressed slower in children who were treated for cancer before age four. This prospective study showed that children with cancer were below average for both mental and motor development. With increasing survival rates for children with cancer, the developmental implications for our smallest patients are an important concern. Timely rehabilitation to optimize all areas of development is essential. This workshop will provide a clinical overview of the role of the occupational therapist on a multidisciplinary oncology team, the patient issues resulting from surgeries and treatment protocols, the difficulties to promoting typical development, and the referral process along with its challenges. Case studies of infants with brain tumours, acute lymphoblastic leukemia and neuroblastoma will highlight their clinical rehabilitation to maximize their development throughout their cancer journey.
Melissa A. Alderfer, PhD
Senior Research Scientist, The Center for Healthcare Delivery Sciences
Nemours Children’s Health System/Alfred I. duPont Hospital for Children, Wilmington, DE
Associate Professor of Pediatrics
Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA
Dr. Alderfer completed a doctorate degree in clinical psychology at the University of Utah and a post doctoral fellowship in pediatric psychology in the Division of Oncology at The Children’s Hospital ofPhiladelphia (CHOP). After fellowship, she stayed on in the Division of Oncology at CHOP and joined the standing faculty in the Department Pediatrics at Perelman School of Medicine at the University of Pennsylvania. She rose to the level of associate professor before transitioning in 2013 to her current position as a senior research scientist in the Center for Healthcare Delivery Sciences within Nemours Children’s Health System. Under the broad umbrella of healthcare delivery science, her program of research focuses on how childhood chronic illness impacts families, how families adapt and learn to manage illness and the healthcare system, and how we can intervene to improve the experience. Her research has been funded by the National Institutes of Health, American Cancer Society, and various other cancer foundations. She currently has 92 peer‐reviewed manuscripts and chapters.
Vanessa Burgess, MSc OT, OT Reg. (Ont.)
Occupational Therapist, Pediatric Oncology
McMaster Children’s Hospital, Hamilton Health Sciences, Hamilton, ON
Preceptor/Lecturer, Occupational Therapy Program
McMaster University, Hamilton, ON
Vanessa Burgess completed a Master of Science in Occupational Therapy at the University of Toronto following the completion of her undergraduate degree. She practiced at ErinoakKids Children’s Treatment Centre, conducting community rehabilitation with pediatric clients with developmental disabilities, neurological impairments, multiple disabilities, complex disabilities and sensory processing difficulties. Here she focused on oral motor and feeding skills, activities of daily living, fine motor skills and written productivity, and sensory processing. She continued her community practice experience at a private practice, focusing on oral motor and feeding skills and sensory processing with clients with a wide variety of diagnoses and undiagnosed issues. Vanessa has been practicing in oncology at McMaster Children’s Hospital for the past eight years. She is part of the multi‐disciplinary team on the inpatient ward, outpatient active therapy clinic and neuro‐oncology clinic. Her focus includes oral feeding and dysphagia including videofluoroscopic swallow studies, infant development, activities of daily living, functional mobility and equipment, fine motor skills and school participation. She enjoys working directly with patients and their families to empower them to overcome barriers in their everyday lives throughout their cancer journey.
Dana Devine, PhD
Chief Medical & Scientific Officer
Canadian Blood Services, Ottawa, ON
Professor of Pathology & Laboratory Medicine
University of British Columbia, Vancouver, BC
Dana Devine is currently the chief medical & scientific officer at Canadian Blood Services. She is also professor of pathology and laboratory medicine at the University of British Columbia, and a founding member of the university’s Centre for Blood Research. She is the editor‐in‐chief of the blood transfusion journal Vox Sanguinis. In service to the transfusion community, Dr. Devine is a member of numerous advisory committees and boards for such organizations as American Red Cross, Blood Systems Research Institute, Bloodworks Northwest, the New York Blood Center and the Australian Red Cross Blood Service. Dr. Devine completed her research training at Duke University in North Carolina where she obtained her PhD degree. She has a longstanding research career in blood products, transfusion medicine, platelet biology, complement biochemistry, and coagulation. Her current research is funded by the Burroughs Wellcome Fund, Canadian Blood Services, Canadian Institutes of Health Research (CIHR) and the National Science and Engineering Research Council (NSERC). She is a fellow of the Canadian Academy of Health Sciences.
Michelle Science, MD, MSc, FRCPC
Infectious Disease Physician
Medical Advisor, Infection Prevention and Control
Medical Co‐Lead, Antimicrobial Stewardship Program
The Hospital for Sick Children, Toronto, ON
Michelle Science is an academic clinician in the Division of Infectious Diseases at SickKids Hospital and an assistant professor at the University of Toronto. Since 2012, she has been the medical advisor for Infection Prevention and Control (IPAC) and the co‐lead of the Antimicrobial Stewardship Program (ASP) at SickKids. More recently, she joined Public Health Ontario as a consulting IPAC physician.
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.
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.
Sylvie Kozlowskyj 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 seven 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 health care 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 and Long-Term Care, 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.