Work with us to improve how we manage pain care for children

It can sometimes be hard for parents and healthcare professionals to tell when children and young people have breakthrough pain. To help address this, researchers have designed a first-of-its-kind questionnaire, aiming to gather insights to help healthcare professionals recognise breakthrough pain early, manage it better and help reduce emergency hospital admissions due to the pain.

Children and young people aged three months to 25 years who use paediatric oncology or palliative care services, or their parents and caregivers, can take part in the research by taking part in all or some of these activities, including:

• Talk to researchers for 30 to 60 minutes about your pain
• Complete a questionnaire about pain and share your thoughts on it (taking around 30 to 45 minutes)
• Complete a questionnaire about pain on three separate occasions (each time taking around 10 minutes)

The research is a multi-centre palliative care, oncology, and chronic pain study being led by the University of Southampton and supported by GOSH Charity.

Dilini Rajapakse, consultant in paediatric chronic pain and palliative medicine at GOSH, said: “Breakthrough pain, which is sudden or expected spikes of pain throughout the day and night is a poorly understood and studied part of chronic pain management. In adults, there are several validated tools for assessment which guides management, but in children and young people there are no such tools and therefore children and young people often live with breakthrough pain which is under-expressed and under-treated. This leads to fatigue, low mood and poor quality of life because they are not able to accurately communicate their pain and distress.

“The Beacon research study will enable us to develop a simple to use tool which children and young people and their families can use to communicate their breakthrough pain, and which will then allow healthcare professionals to make more accurate treatment plans for them.”

If you or your child or young person would like to take part in the research or find out more, you can email the research team:

Email: beacon@soton.ac.uk

If you are a GOSH patient, you can speak directly with your Clinical Nurse Specialist (CNS) or contact them directly on MyGOSH.