Quantifying the value of aspects of personalised care: development of a Discrete Choice Experiment around support for self-management of chronic pain.
The problem
Person-centredness is key to good clinical care for long-term conditions. Person-centred care engages with the individual, their circumstances and the values they live by. There have been no attempts to quantify the value that patients place on the ways in which care is made personal.We are examining how patients value the way in which care is made personal through the example of support for self-management of chronic pain. We chose chronic pain because it is a long-term condition with a substantial impact on wellbeing; it is ubiquitous and not limited to one diagnosis or set of circumstances. Self-management is an important component of living well with chronic pain and support for self-management takes a variety of forms including education, peer groups and coaching.
The approach
We designed a discrete choice experiment (DCE) to value ways in which support for self-management of chronic pain is made personal. Here, we describe how the DCE was developed through a two-stage process of qualitative research:(1) Developing a limited set of attributes relevant to person-centred careThis stage comprised three tasks
- Review of a recent conceptual map of what matters to individuals in healthcare along with concepts of person centred care
- Focus groups: we conducted 6 focus groups involving patients and support organisations. We explored aspects of making support for self management personal
- Interdisciplinary discussion within the research team to draft and refine the attributes
(2) Developing and testing the DCEThis stage comprised two tasks
- Cognitive (think-aloud) testing of a draft DCE
- Revision and re-testing of final candidate DCE
Findings
In stage one we selected four attributes of person-centred care: information; taking account of the individual's situation; engaging with the individual's values; and personal interaction style. Each attribute was constructed with three levels representing increasing personalisation. For the DCE we added a fifth variable: cost (based on 6 hypothetical weekly sessions of support).In stage two we found that while participants recognised the attributes as different, and traded between them, they had difficulty differentiating between some levels and combinations. In revising the DCE we used two levels per attribute instead of three, and emphasised that situation related to the here and now, whereas values related to what people want from life.
Consequences
This is the first study applying a hard economic technique to softer qualitative aspects of personalisation. This required the reduction of a complex construct into a small number of discrete and measurable attributes. We have described a rigorous and reproducible method for this, while highlighting the challenges of using economic valuation techniques for person centred care. The actual DCE will be conducted with an online panel of people with chronic pain during Spring 2015.
Credits
- Christopher Burton
- Alison Elliott
- Vikki Entwistle
- Terry Porteous
- Nicolas Krucien
- Mandy Ryan