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Reflections on Advances in Pediatric Oncology Survivorship and AfterCare

Eleanor Hendershot is an experienced pediatric oncology nurse at McMaster Children’s Hospital, whose career spans over 30 years, including roles at SickKids and Princess Margaret Cancer Centre. She is deeply focused on survivorship and AfterCare and is a dedicated advocate for evidence-based compassionate follow-up care for childhood cancer survivors.

Picture of Eleanor Hendershot, pediatric oncology nurse practitionerIn reflecting on my last three decades working in pediatric oncology nursing, it’s evident that the field has undergone remarkable transformation. In particular, with my focus on AfterCare for the past 13 years, with experience across leading institutions, I’ve witnessed how advances in therapy, supportive care, and clinical research have significantly improved outcomes.

The majority of children are not only surviving cancer but also living long and productive lives. This progress has shifted attention toward survivorship, with increasing emphasis on the long-term health and well-being of pediatric cancer survivors.

Within survivorship care, the Children’s Oncology Group has developed evidence-based guidelines (www.survivorshipguidelines.org) to support routine screening for late effects of cancer and its treatment. These late effects are influenced by the type of disease and individual treatment exposures (chemotherapy, radiotherapy, surgery), and may include second malignancies, organ dysfunction (cardiovascular, auditory, bony, renal, pulmonary, endocrine, neurocognitive, etc.), and psychosocial concerns. Importantly, late effects may emerge years or even decades after therapy ends, making survivorship care an essential component of comprehensive oncology practice.

One of the most significant recent advances in this field is the refinement of late-effects screening based on new evidence, research and expert consensus. A key example is the monitoring of cardiomyopathy (disease of the heart muscle) in survivors treated with anthracyclines (a type of chemotherapy used to treat certain types of cancer such as leukemia and lymphoma). Until recently, guidelines recommended lifelong echocardiograms for all survivors, regardless of cumulative anthracycline dose. New evidence, however, has demonstrated that survivors who received less than 100 mg/m² are not at increased risk of cardiomyopathy and therefore do not require lifelong routine echocardiographic surveillance.

Although this adjustment may appear modest, its impact is profound. Survivors of leukemia, the largest survivor population, typically receive low cumulative anthracycline doses. For these patients and their families, lifelong counselling and repeated cardiac screening created unnecessary anxiety and reinforced the sense of living under ongoing medical surveillance. From a cost-benefit perspective, routine echocardiography in low-risk patients carried significant cost and resource implications without measurable benefit.

As part of the updated guidelines, ongoing heart monitoring is no longer required, allowing leukemia survivors, in some instances, to be discharged from follow-up care once they are ten years post-therapy and have reached the age of 18 or if they are a teenager when diagnosed until both criteria are met.

How have you seen pediatric oncology practice change?

The benefits of this targeted approach extend well beyond medical outcomes. By reducing unnecessary tests and clinic visits, survivors and families gain greater peace of mind and some relief from the intensity of lifelong surveillance, while healthcare systems benefit from more efficient use of resources. Just as importantly, minimizing disruptions to education, employment, and social development allows survivors to move forward in their lives with greater confidence. This balance—protecting long-term health while recognizing that not all survivors carry the same risks—has become central to modern, individualized survivorship care.

In reflecting on the evolution of pediatric oncology nursing and survivorship care, it’s clear that our field has made tremendous strides—not only in improving survival rates but also in refining how we support survivors long-term. The shift toward individualized care, such as updated cardiac screening guidelines, has reduced unnecessary interventions and empowered survivors to live with greater confidence.

Since 2001, POGO has been a cornerstone in supporting survivors of childhood cancer through its AfterCare Clinic Program network. Today, eight POGO AfterCare Clinics across Ontario serve more than 5,000 survivors, helping ensure that children, adolescents and young adult survivors of childhood cancer receive the essential follow-up care they need to lead healthy, fulfilling lives.


This contribution to “Reflective Practice Corner” was written for the fall 2025 issue of the RePORTer by Eleanor Hendershot, MN, BScN, RN, Pediatric Nurse Practitioner, McMaster Children’s Hospital.

Reflective Practice Corner, a standing section in The RePORTer—POGO’s Nursing Newsletter—features reflections from nurses across the province, offering insight into their experiences. It also invites readers to pause and consider the questions posed.


Cancer-Related Fatigue and What Pediatric Oncology Nurses Need to Know

Cancer-related fatigue is a major but often under-recognized aspect of childhood cancer care. As treatments become more effective and survival rates improve, attention is shifting to the overall well-being of young patients during therapy. Fatigue stands out as a common experience that can affect every part of a child’s life, from play to school to home. Understanding fatigue is an essential step in providing truly comprehensive pediatric oncology care.

What does the evidence say about fatigue in pediatric oncology?

We know that fatigue is one of the most prevalent, severe and distressing symptoms and it can persist long-term into survivorship. Fatigue is associated with a decreased quality of life and can co-occur with other symptoms such as depression and sleep disturbance.

So, what can we do about it?

POGO’s Guidelines Program provides healthcare professionals in Ontario and worldwide with the best options for managing the adverse effects of cancer and its treatment with the goal of improving the health and quality of life of children with cancer.

Read more about the program here.

Recently, this POGO program released a fatigue clinical practice guideline (CPG) to get you moving in the right direction. The purpose of the fatigue CPG is to guide healthcare providers in the management of fatigue in children and adolescents with cancer and pediatric recipients of hematopoietic stem cell transplants (HCT).

The fatigue CPG ultimately highlights four recommendations and one good practice statement (see table below). Nurses at the bedside and in clinics are uniquely positioned to implement these evidence-based recommendations.

Adapted from Table 1. Patel et al, 2023    

I’ve reviewed the fatigue CPG, now what?

Start with the good practice statement. You can ask your patients about fevers, nausea and vomiting, pain and more, so now is the time to start asking about fatigue. There are many tools to help you assess fatigue; see if your institution is using any of them. Some examples include: Peds-PRO-CTCAE, PROMIS and SSPedi: Symptom Screening in Pediatrics Tool.

Next, try recommendation 1, the use of physical activity. There is no perfect intervention for physical activity, but you can assess what brings your patient joy and start small and scale up. Maybe it is a dance party that the unit holds for 10 minutes a day or maybe your unit has organized scavenger hunts that have the patients up and moving around the unit and hospital. Encourage families to get involved and plan activities such as walks, bike rides or yoga.

Guided by the POGO fatigue CPG, the Children’s Oncology Group (COG) New Diagnosis Guide now incorporates information about fatigue, including describing fatigue as a symptom of cancer and cancer therapy and offering suggestions to families on how to manage fatigue. This guide can help you start the conversation.  

Find the New Diagnosis Guide and other COG family resources here. https://childrensoncologygroup.org/cog-family-handbook

Review POGO’s clinical practice guidelines on fatigue, and other topics, here

AboutKidsHealth has also developed some great resources about fatigue which you can read more about here: Cancer-related fatigue

Denise Mills, MN, RN(EC), NP Pediatrics
POGO Provincial Clinical Lead, Pediatric Oncology Nursing


References

  1. Hooke, M.C., & Linder, L.A. (2019). Symptoms in children receiving treatment for cancer-part 1: fatigue, sleep disturbance, and nausea/vomiting. Journal of Pediatric Oncology Nursing, 36(4), 244-261.
  2. Patel, P., et al. (2023). Guideline for the management of fatigue in children and adolescents with cancer or pediatric hematopoietic cell transplant recipients: 2023 update. www.thelancet.com Vol 63 September, 2023.

How Slushies and Red Lights Provide Supportive Care for Childhood Cancer Patients

About a decade ago, I sat in a hospital in Leeds, Yorkshire, discussing with the parents of one of my young patients their high-dose chemotherapy treatment, including the risks of severe infection, liver and lung problems. “And,” I added as an aside, “there’s a chance of mucositis, which is a sore mouth, like a mouth ulcer.”

Three weeks later, and the child could hardly open their mouth—with lips cracked and bleeding, spitting out small pieces of the lining of their mouth, unable to eat or even swallow their own saliva. The lack of attention I had paid to mucositis up to that point struck me hard.  And back then, there was very little we could do to prevent or treat it.

POGO Guidelines Offer New Approaches to Mucositis Care

Fast forward to mid-2020s when the POGO Clinical Practice Guideline update to Prevention of oral and oralpharyngeal mucositis in pediatric cancer and hematopoietic stem cell transplant patients summarized the most effective—and importantly the ineffective—therapies and approaches to prevent and treat mucositis in children and young people.

The POGO guideline gave us some new approaches to try, and, as it was an extremely well-produced and high-quality international guideline, the leverage to kick some of these approaches into action.

Why is it important that the guideline marks out ineffective treatments?

1) There's the hassle of taking medicines when they don't do anything.

2) There's the side effects, including stinging and bad tastes.

3) There's the unnecessary costs to the health service.

Slushies Bring New Meaning to Cold Comfort

One approach suggested in the guideline was "cryotherapy." You might have heard about cryotherapy for freezing off veruccas (warts) on your feet, or maybe with respect to Walt Disney freezing his body after death, but the phrase just means "treating with cold." In the case of mucositis prevention, this means the patient holding ice chips in their mouth. It's meant to reduce the amount of blood flowing to the delicate layers just inside the mouth, and so reduce the amount of chemo passing there to cause damage. In the UK, we struggled with the technical troubles of how to exactly procure, store and regulate popsicles within our hospital system, but this has been spectacularly and tastily overcome at McMaster Children’s Hospital in Hamilton, Ontario, with an in-unit slushie machine. Choosing which slushy you can have with chemo seems much more appealing than holding an ice cube in your mouth until it melts!

Shining a Red Light on Healing

The other main approach in the guideline was photobiomodulation. This is the use of a special wavelength of red (or infra-red) light to encourage the cells of the mouth lining to heal faster. Working with a hugely enthusiastic pair of dentists, and in collaboration with our local hospital charity, we acquired an LED-based photobiomodulation system. We put together detailed information on how to use it, how to clean it, and (after a beautiful bit of co-design and qualitative research from Dr. Claudia Heggie), a film made with young patients to explain it.

Now, despite my slight incredulity that shining what looks like a fancy red torch on someone would make them feel better, we use it frequently. We’ve massively reduced the severity of mucositis in our transplant unit and reduced the numbers of patients who've needed TPN (all your “food” fed through your central line). We’ve had patients travel from long distances to get some red light magic to feel better. We’ve seen requests from around the country asking how other units in the UK can get it going. Which makes us sound great, but it should be noted that this only got going because the POGO guidelines were there. Not wishy washy “expert” statements from the manufacturers of these devices, but guidelines with solidity and seriously interrogated evidence. This quality of document helps us persuade the administrative teams who need to control the finances of our hospitals that the intervention is truly likely to help our patients, and maybe even save money.

POGO’s Impact Immeasurable

These guidelines, the creation of a team based in Ontario, has spread good things much, much further. POGO, please listen to me, as a “come from away”: your work has power. POGO should be extremely proud of the guidelines they develop, nurture, help to create and support the uptake of. The impact they have around the world is immeasurable.

By Bob Phillips, BMBCh, PhD
Professor of Pediatric Oncology and Director, Candlelighters Supportive Care Centre,
University of York/Hull-York Medical School, UK


Dr. Bob Phillips is a Senior Academic at the Centre for Research and Dissemination and Hull York Medical School and an Honorary Consultant in Pediatric/ Teenage-Young Adult Oncology at Leeds Children's Hospital. Bob is a respected global leader in supportive care management. He spoke at the 2023 POGO Symposium on Childhood Cancer.



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