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.

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