Patient preferences help us to see what good healthcare services for people with fibromyalgia might look like

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Patient preferences help us to see what good healthcare services for people with fibromyalgia might look like

What is the background to this research?

Fibromyalgia is a chronic health condition affecting about 2.5 million people in the UK. It often starts in teenage years or early adulthood and causes widespread body pain, extreme tiredness, and problems with thinking and memory.

While there are proven treatments available, diagnosing and managing fibromyalgia can be challenging. There is also very little information on how to best set up health services to provide recommended treatments effectively.

What did we want to find out?

The goal of this study was to find out what patients with fibromyalgia prefer when it comes to the key features of their healthcare services.

What did we do?

We used a survey method called a Discrete Choice Experiment (DCE) to understand what people with fibromyalgia prefer in their healthcare. This method helps measure how much people value different features of healthcare services.

The survey asked about different scenarios of what care for fibromyalgia might look like, asking people to choose in each case between two examples with differing characteristics, for example longer or shorter waiting times, how and where care is delivered, or the type of treatment that is received.

We designed this survey based on earlier stages of the PAtient-centred Care for Fibromyalgia: New pathway Design ( PACFIND ) project and a review of existing research on fibromyalgia care.

What did we find?

We received completed surveys from 518 people from the UK, all of whom were over 18 and diagnosed with fibromyalgia.

We found that:

  • They preferred a healthcare model where they get diagnosed earlier and receive ongoing care from a rheumatologist, either in person or through phone or video calls, with a slight preference for the latter.
  • The most favoured treatment was medication, followed by physical therapy, with talking therapy being the least preferred.
  • Compared to a 6-month waiting time, they preferred a shorter wait of 3 months and disliked waiting 12 months.
  • They were also open to getting ongoing help from a nurse practitioner or GP instead of a rheumatologist if other parts of the care model were adjusted to compensate.

Why does this research matter?

This study found that although patients prefer specialist care from a rheumatologist, they might be willing to compromise on this if other aspects of their care are improved. For example, they could accept seeing a GP or a nurse practitioner instead. This has important implications for healthcare practice and policy, especially in areas where there aren't many specialists available.

Who funded this study?

This study is part of the PACFiND programme of work which is funded by Versus Arthritis .

Where can I read more?

Click here for access to the full paper.