Supportive care is an area of children’s cancer care that has progressed significantly in recent decades. Dr Bob Phillips and Dr Jess Morgan, members of CCLG’s Supportive Care working group, explain just some of the ways it has improved to help patients and their families cope with their disease and the treatment of it.
There is far more to the treatment and care of children with cancer than the delivery of drugs and procedures. Support is often needed to manage any side effects along with the emotional burden of treatment. Supportive care relates to the physical, social, educational and psychological aspects of cancer and its treatment, and helps the young person, and their family, to live as well as possible with the effects.
Just as we’ve been developing the anti-cancer parts of treatment through research, we should be doing the same with supportive care. Research priority setting exercises, where patients, families, academics and clinicians share their top unanswered questions consistently rank supportive care questions very highly. The research which makes supportive care better:
• is patient-centred (it takes patient-important questions and assesses things which really matter)
• multidisciplinary (it includes all the professions which look after children with cancer, not just the clinicians delivering treatments)
• collaborative (we’ll never learn anything without this approach) • uses both quantitative (‘counting’) and qualitative (‘talking and listening’) approaches
Here are some examples of how supportive care can make a difference to young patients:
1. IMPROVING HOW WE MANAGE INFECTIONS
Managing suspected infection during periods of immunosuppression after treatment for cancer is very common, disruptive and unpleasant. We know that ’febrile neutropenia’, having a temperature when there are very few infection-fighting neutrophils (a type of white blood cell), is a complication that can lead to very serious sepsis, and sometimes even death.
Looking back 15 years, everyone who was admitted to hospital with febrile neutropenia was treated for seven days with a combination of IV antibiotics, even if it was just a cold. Over that time, research was undertaken to work out who was at greater risk of serious infection, and who was at much less chance of running into problems. This was combined with research understanding how staff, families and young people felt about the treatment of infection.
This all then meant national and international guidelines changed to promote the safe use of shorter (two- to five-day) antibiotic courses for many children, and even shorter (eight to 24 hours) of hospitalisation for some. This was then found to be really useful in the COVID-19 pandemic where getting out of hospital and back home felt even more important.
Back in the early 2000s, we’d routinely do a chest X-ray of every child who came in with febrile neutropenia ’just in case’ they had a chest infection. This wasn’t ideal for anyone, and research showed it wasn’t actually that useful. It was far better to look at the child carefully, and only do the X-ray if there was a really good reason (like if the chest sounded like there might be pneumonia). Sometimes, advancing supportive care means doing ’less’ rather than doing ’more’.
2. HELPING CHILDREN WITH SIDE EFFECTS
Sometimes, making supportive care better is absolutely about doing ’more’ though. Some people will have had the experience of seeing children with severe chemotherapy-induced mucositis. This complication, where the child’s mouth becomes extremely sore, with ulcers so widespread they can’t swallow their own saliva, eat, or drink is extremely distressing. Children may need feed into an NG tube, or sometimes direct into their central line (called TPN: total parenteral nutrition), and a morphine pain relief pump. It was very clear that we needed to ’do more’ when it came to preventing and treating mucositis.
Two treatments were developed in adults who were undergoing bone marrow transplantation. One, a type of mouthwash which reduced the chances of mucositis occurring and another, a dietary supplement to try to heal the gut as the chemo or radiotherapy attacked it. Studies were later undertaken to see if it works for younger patients. The trials found that the extremely salty mouthwash was just too horrible for younger children to keep in their mouth long enough for it to work, and if anything, made them feel worse. The dietary supplement didn’t work much either, given a number of different ways, but didn’t really cause many problems. Not all ’good ideas’ work and not everything that works in adults works in children.
However, some things do work and might make things better. There’s a different mouthwash (’Gelclair’) that coats the inside of the mouth and for some children makes a big difference. And then there’s the development of ‘photobiomodulation’ (PBM) to treat or prevent mucositis. PBM is the use of a special sort of light, coming from a special laser or LED ’torch’ which is shone onto the mouth either during chemo, to prevent mucositis, or when mucositis is developing, to try to speed up the healing process. It’s still not in widespread use across the UK, as there are lots of practical questions about how to get it into everyday use on the wards, and exactly how much and how often to give, but it is increasing in uptake.
3. HOW THE USE OF ANTI-SICKNESS DRUGS HAS IMPROVED
Another common, and deeply unpleasant, experience on treatment is feeling sick and the act of being sick. It’s difficult to believe, perhaps, but there were young people who abandoned their treatment in the 1990s because the nausea and vomiting were so bad. The development of ondansetron around the turn of the century revolutionised anti-sickness medicine. More drugs have been developed, like aprepitant, and there’s been an increase in the understanding about how to use them.
They’re still all developed in adults first, and we’ll need to keep fighting for better ways to use the studies from adults and get children recognised earlier. Unlike the treatment of acute lymphoblastic leukaemia (ALL), which is more or less identical if you’re in Aberdeen, Bristol, Cardiff or Belfast, anti-sickness medicine use is much more variable. International and national guidelines might help in greater consistency and the better conversion of the best, newest evidence into practice, and members of CCLG are at the cutting-edge of this work.
4. SUPPORTING PATIENTS AND FAMILIES’ EMOTIONAL WELLBEING
Supporting the emotional and psychological challenges that treatment for cancer brings has developed enormously over the decades and helping people with how they feel is a really big part of supportive care. Partly, this has been supported in the UK by making sure that psychosocial support is considered a key part of care, just like the chemotherapy drugs and the safe systems to give them.
It’s also been aided by the development of specific programmes to support families, such as the ‘Hope in the Community’ programme which was developed with ’Bethany’s Wish’, a Special Named Fund at CCLG. This was rolled out rapidly through the COVID-19 pandemic, when we realised it might be needed more than ever. (This was done as part of a research project, where we showed that releasing the entire course in one day was far less effective than a session per week.)
This sort of programme can complement the work undertaken by specialist nurses, social works, counsellors, and psychologists in supporting families through the many challenges of treatment.
