Rheumatic pain: Children and young peoples’ lived experiences
Research type
Research Study
Full title
Rheumatic pain: Children and young peoples’ lived experiences
IRAS ID
305793
Contact name
Sarah Peters
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Research has found that children/young people with musculoskeletal conditions receive different pain management based on whether their pain is thought to be inflammatory or non-inflammatory (Lee et al., 2020). However, it is unknown whether pain experiences are similar or different between these groups. It is important to explore how their experiences compare to make sure that the most appropriate pain management is provided. The purpose of this study is to explore and compare children’s/young peoples’ pain experiences dependent on whether their condition is believed to be inflammatory or non-inflammatory. The research consists of two phases.
In Phase 1, children/young people (aged 5-19) will be recruited from one of four paediatric rheumatology centres and pain services. Approximately 154 children and young people will take part in an online questionnaire. The first section will explore broad pain influences, including pain beliefs, pain coping, pain interference, mood, and pain quality. The second section will be a pain diary assessing pain intensity, pain location, pain interference and pain emotion. The pain diary will be completed once a week for 3 months (12 weeks). In Phase 2, approximately 15-25 children/young people from Phase 1 will take part in interviews to explore and compare lived pain experiences, including pain characteristics, pain beliefs, and experiences with healthcare professionals. Pain experiences will be compared between children/young people with inflammatory conditions versus non-inflammatory conditions in both phases.
Findings will provide children/young people and their families with an improved understanding of their personal pain experiences which will lead to better self-management of pain. Healthcare professionals will be able to make more informed decisions about pain management by identifying particular pain patterns and appropriately targeting these depending on the nature of the child’s/young person’s pain.
The research is funded by the Pain Relief Foundation as part of a three-year PhD studentship.
Summary of results
Who carried out the research?
Researchers at the University of Manchester carried out the research. Members of the research team were based in The Centre for Musculoskeletal Research and The Manchester Centre for Health Psychology. This work was supported by a PhD funded by the Pain Relief Foundation.Aspects of this work were also supported by funding from the Centre for Epidemiology Versus Arthritis (grant number 20380); the NIHR Manchester Biomedical Research Centre (NIHR203308); and a Foundation Fellowship award from Versus Arthritis (grant number 22433).
Patient involvement
The research team carried out multiple patient involvement activities with young people diagnosed with chronic musculoskeletal conditions. These included activities such as an online interactive group meeting and online activity using mentimeter. Activities helped to design two research studies: an online pain assessment questionnaire and interviews with children and young people with chronic musculoskeletal conditions and chronic pain.Activities were carried out with members of a national patient research advisory group, called Your Rheum (aged 11 to 24 years). Your Rheum is a group of young individuals in the UK who live with rheumatic conditions (https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fyourrheum.org%2F&data=05%7C02%7Cnottingham1.rec%40hra.nhs.uk%7Cf1d02a4812e04c7e633408dcafaa92da%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638578394363847807%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=0tKAvpKFK4nnPlr9Xb105kCkurP%2FvuX9ZsAHeEhcLYk%3D&reserved=0).
Young people helped to identify pain topics which they felt were important to be explored in this work, such as pain coping methods and the social context of pain. Young people also felt it was important to ask during one of the studies about telling different types of pain apart. A question was added to one of the studies (interviews) which asked participants “Do you get different types of pain? Can you describe how the pains are similar or different?”.
Young people also provided feedback on the design of the study. For example, they felt it was important for participants to have the option to receive the interview questions before the interview.
Background
Pain assessment and management is different for children/young people with chronic musculoskeletal conditions. Approaches are different if the condition is inflammatory (such as juvenile arthritis) or non-inflammatory (such as pain without a known cause, referred to as ‘idiopathic pain’). We do not know whether children/young people experience chronic pain similarly or differently between these conditions.Study aim
This study aimed to understand children’s/young people’s experiences of living with chronic pain in the context of an inflammatory or non-inflammatory chronic musculoskeletal condition.What did participants do?
There were two stages to the study.In stage one, young people took part in an online questionnaire exploring their pain experience broadly. This explored areas such as how the pain felt, what they believed about their pain or how they coped with their pain.
Some young people from stage one took part in a stage two online interview to explore their pain experiences in more detail.
Who took part?
Children/young people took part between December 2022 to November 2023.Twenty-six participants (aged 7-19 years) took part in stage one. Seventeen had an inflammatory condition and nine had a non-inflammatory condition.
Thirteen participants (aged 9-18 years) took part in stage two. Eight had an inflammatory condition and five had a non-inflammatory condition.
What did we find?
Differences in pain experiences
Some areas of the pain experience were different for children with inflammatory conditions compared to non-inflammatory conditions. For example, children with inflammatory conditions experienced pain in less areas of the body compared to those with non-inflammatory conditions.Children with inflammatory conditions talked about the cause of their pain in relation to inflammation. However, children with non-inflammatory conditions believed their pain was also caused by complex chronic pain mechanisms. For example, the pathways between the nerves and the brain becoming more sensitive, such as to touch or pain.
Similarities in pain experiences
Overall, it was not possible to separate pain experiences into an ‘inflammatory’ experience or a ‘non-inflammatory’ experience. Children and young people with inflammatory conditions or non-inflammatory conditions shared many chronic pain experiences. They used similar processes to understand their pain. For example, by comparing their current pain experience to past experiences (e.g. of pain) and new information (e.g. pain explanations provided by health professionals).Children’s experiences of pain also varied within similar conditions which shows that pain is unique to the individual. For example, a child with arthritis could have mild pain in a small area of the body whilst another child with arthritis could have intense pain in lots of areas of the body.
All children/young people, regardless of their musculoskeletal condition, struggled with pain being unpredictable and uncontrollable.
The impact that pain had on children’s/young people’s lives was more distressing to young people than the pain itself.
What does this mean?
These findings support recommendations to not categorise chronic pain experiences as ‘inflammatory’ or ‘non-inflammatory’ for children/young people chronic musculoskeletal conditions. This is because children and young people share similar processes to make sense of their pain and had similar psychological and social experiences of pain.REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
22/EM/0098
Date of REC Opinion
4 Jul 2022
REC opinion
Further Information Favourable Opinion