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.
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
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.