RIPPLE Rheumatic pain: Children and young peoples’ lived experiences

Chronic musculoskeletal pain is pain which comes and goes or continues for longer than three months. This type of pain can be in the bones, muscles, tendons, ligaments, and soft tissues.

Children and young people can experience pain from diagnoses that are viewed as inflammatory (e.g. juvenile arthritis, lupus) or non-inflammatory (e.g. widespread pain, CRPS). Sometimes healthcare professionals choose different pain management approaches dependent on whether the cause of pain is believed to be inflammatory non-inflammatory.

However, there is limited evidence of how pain experiences are similar or different between these children and young people or whether other patient-targeted pain management methods may be better.

Aims of the study

Researchers at the University of Manchester are wanting to hear from children and young people with chronic musculoskeletal diagnoses about their experiences of pain. They are interested in finding out more about how children and young people describe their pain (e.g. where is the pain located, how frequent is it), what impact pain has (e.g. on their day-to-day life), and their experiences with healthcare professionals (e.g. whether and how pain is discussed).

Who are we looking for?

Children and young people can take part 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

What does it involve?

The study is made up of two parts. Children and young people can take part in one or both studies.

1. A one-off questionnaire exploring broad pain experiences (e.g. coping with pain, beliefs about how pain is experienced) followed by a brief (5 mins) once-weekly pain diary for 3 months which explores pain features (e.g. pain location, whether pain impacted activities that week).
2. An interview to discuss pain experiences further. This can take place online (Zoom or Teams) or over the telephone.

Please note, the sample size is much smaller for the interviews and must fit specific requirements (e.g. different ages and diagnoses). Therefore, not everyone who wishes to take part in interviews will be able to. However, please do get in touch to express interest in taking part.

Who is conducting the study?

• Researchers: Miss Danielle Mountain
• Research centre: University of Manchester

Interested?

If you would like further information on either study then follow this link for the participant information sheets: https://tinyurl.com/RIPPLE-PIS

If you want to take part in the pain diary then you can start the diary by following this link: https://www.qualtrics.manchester.ac.uk/jfe/form/SV_3Dxwysx2wuYNDpA

If you would like to take part, please contact Danielle Mountain:

• Email: danielle.mountain@manchester.ac.uk
• Telephone: 07799 477805

Closing date

• Pain diary: Close 30th December 2023
• Interviews: Close March 2024 (approx.)