A new study is investigating how children and young people aged 5-19 experience pain – and they’re keen to hear from people with lupus.

 

Background

Chronic musculoskeletal pain is pain that lasts for three months or more, and it may be continuous or come and go. It includes pain in the joints, muscles, or bones.

Children and young people can experience this kind of pain when they have a musculoskeletal condition, which can be inflammatory (such as lupus) or non-inflammatory (such as chronic widespread pain). Sometimes medical professionals recommend different types of treatment depending on whether they believe the pain is inflammatory or inflammatory. However, there is limited evidence on how experiences of pain may be different for these two groups, and whether more patient-focused pain management strategies may work better.

What is this research trying to find out?

This study is investigating experiences of pain in children and young people with different health conditions, and if they may be similar or different depending on whether their condition is inflammatory or non-inflammatory. This includes looking at how they describe their pain, how it impacts them, and what their experiences with healthcare have been.

What does the research involve?

This study has two parts:

1.A weekly pain diary, completed for 3 months, which explores experiences of pain and how it has an impact.

2. An interview with a researcher about experiences of pain, including impacts and healthcare experiences. This can take place by telephone or online (via Zoom or Teams).

People can take part in one or both parts of the study. Children can take part in the interview alone or together with a parent. There are approximately 154 places for part 1 (pain diary), and 15-25 for part 2 (interviews).

Who can take part?

Children and young people can be included in the study if they are:

• Aged 5-19 years 
• Have a diagnosed chronic musculoskeletal condition that is listed below: 
  • Juvenile arthritis(i.e. juvenile idiopathic arthritis; JIA) 
  • Systemic lupus erythematosus 
  • Hypermobility
  • Chronic back pain not from arthritis (i.e. non-specific chronic low back pain) 
  • Other chronic musculoskeletal pain that is idiopathic i.e.  pain of unknown origin (e.g., widespread pain, complex regional pain syndrome, juvenile fibromyalgia, complex pain) 
• Have previously had, or currently experience, pain that comes and goes or is persistent for 3 or more months 
• Fluent in English and live in the United Kingdom 

 

The study researcher said they don’t have many young people with lupus included, so they are particularly keen to hear from people with lupus so that this perspective is represented.

How do I find out more?

If you’d like to find out more about the study, or would like to get involved, you can contact the lead researcher Danielle Mountain at Danielle.mountain@manchester.ac.uk. You can also read the research information sheets for different age groups and parts of the study HERE, or check their Twitter and Instagram.