Persistent (or chronic) pain has been defined as pain lasting longer than 3 months. It has also been described as pain that lasts longer than expected after healing time. It is thought to affect 20% (or 1 in 5) people in Scotland. For those living with it, persistent pain can make life very difficult. It also accounts for a large share of global health resource use.
Mainstay treatment of persistent pain is with painkillers (analgesics). However, these are often only partly effective. Finding other ways of managing pain can be challenging. Different people need different pain management strategies; one size does not fit all.
Self-management can make a positive difference. However, people often need support from health professionals to find the best strategy for them. In HERU, we worked with researchers from Academic Primary Care and the Health Services Research Unit at the University of Aberdeen to find out which aspects of support for self-management are most important to people living with persistent pain.
What do people want from self-management support?
We held focus groups of people with persistent pain to find out what kind of support they would like. They told us they want health professionals to:
- Understand they are individuals
- Take a whole person approach
- Value them as people
- Provide information
They want help to:
- Set realistic goals
- Become more confident
- Overcome isolation
Person-centredness is important
It was clear people thought that support for self-management should be person-centred. However, to provide the best services, we need to know which aspects of support for self-management are most important. To do this we used a discrete choice experiment (DCE).
A DCE is a method used in health economics to measure preferences. Our short HERU video explains what a DCE is and how we use them in HERU.
Our DCE survey was completed by more than 500 people with persistent pain. We gave them 12 choice tasks asking them to choose between three different support services. These services were described using four descriptive attributes:
Information: a service would either provide the same information to everyone OR information that is relevant to the individual.
Current situation: a service either would OR would not take account of the patient’s current situation (e.g. where they live, who they live with, what resources they have).
Living well: a service either would OR would not take account of what patients want to get from life (e.g. things they want to spend time doing or want to achieve, the kind of person they want to be).
Communication: a service would communicate with patients either in a neutral way OR in a friendly, personal way.
A fifth attribute, Cost, allowed us to see how people valued the descriptive attributes. This allowed us to tell which was most important.
What kind of support is best?
We found that the most important quality of a support service is that it should take account of a person’s ‘current situation’. It is also important to work with them on how to ‘live well’ and achieve what they want to get from life. Personalised ‘information’ is slightly less important but people still prefer it to generic information. ‘Communicating’ in a personal way (rather than a neutral way) was the least important characteristic of the support services we asked people to consider.
What does this mean in practice?
The key lesson from our work is that it’s not just about what support is delivered, but also the way it is delivered. People living with persistent pain want to be regarded as individuals who are all living in different circumstances. Services providing support for self-management must take time to find out about patients’ individual needs and situations. They should try to find ways of empowering patients to live the lives they want to live. Investment in training to improve professionals’ skills should focus on these aspects of supporting self-management. We believe our findings are just as relevant for any other long-term condition.
For more information about the study see:
Burton, C.D., Entwistle, V.A., Elliott, A.M., Krucien, N., Porteous, T. and Ryan, M. (2017) 'The value of different aspects of person-centred care: a series of discrete choice experiments in people with long-term conditions', BMJ Open, 7(4).
The project page on the HERU website provides further information on the research. For more information about this project, please contact Professor Mandy Ryan and be sure to follow the HERU Blog and our twitter account (@HERU_Abdn).
Thanks to Dr Terry Porteous for her work developing this Blog post.
HERU is supported by the Chief Scientist Office (CSO) of the Scottish Government Health and Social Care Directorates (SGHSC). The views expressed here are those of the Unit and not necessarily those of the CSO.
