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.