Magic Lights

Mucositis is painful swelling with ulcers in the gastrointestinal tract - anywhere on the path from the mouth, through the stomach, into the bowels and out through the bottom. It can cause huge amounts of pain, stop young people being able to eat, give them lots of diarrhoea, may increase the risk of infections, and can need treatment in hospital to deal with its effects.

Research has shown we can halve the chances of a child or young person getting mucositis, reduce the severity and even improve the pain and discomfort of mucositis if it occurs, by using "Magic Lights" - more scientifically known as photobiomodulation.

Photobiomodulation (PBM) is the delivery of light energy using a specific wavelength and intensity of light, and is recommended in international guidelines.

The experience of mucositis was previously poorly studied. In a paper in the Archives of Diseases in Childhood, Claudia Heggie and other members of the CSCRC interviewed a range of families and found four main, negative areas of mucositis. They found it was a negative emotive experience - but not just negative because of pain and worry - but also some families felt like it was their ‘fault’ for agreeing to the treatment. They found that having mucositis took them further away from from ”normality“, feeling “chained up” to the pain relief, feeds and hospital beds, loosing the ability to talk clearly and understandably. It also changed the way nutrition was thought about, made some parents feel guilty about not being able to nurture their child with food, and their view of food and the need for other feeds - into tubes or as parenteral nutrition into their central lines. Finally, the researchers described how mucositis put a strain on themselves, the hospital, and their family .

Claudia and colleagues are now working with health care practitioners, families and implementation science academics to create a resource that will let other hospitals more quickly and straighforwardly set up PBM services in their units. In this way we hope to help accelerate the impact of our work.