Healthcare Experiences of People with Fibromyalgia Symptoms
Comparing the Impact of Symptoms and Healthcare Experiences of People who Have and Have Not Received a Diagnosis of Fibromyalgia
What is the background to this study?
Fibromyalgia is a common condition where the main symptom is chronic widespread pain, which is where people experience pain for longer than three months in different parts of the body. There are often also additional symptoms, such as fatigue and sleeping difficulties.
Diagnosis and management of the fibromyalgia is complex. For example, there are currently no objective tests for the diagnosis of the condition. As a result, it often takes a long time for people to be diagnosed and receive appropriate support. A model of care can help to address these important healthcare problems and improve outcomes for people. However, when looking at the existing research, we found there was not currently an evidence-based model of care for fibromyalgia.
We therefore undertook a survey as the first step of a large study programme; the PACFiND Study (PAtient-centred Care for Fibromyalgia: New pathway Design).
What did we want to find out?
We wanted to know whether there were any differences between people with and without a fibromyalgia diagnosis (but who all had typical symptoms) in terms of:
how much the symptoms impacted their lives,
how often they used healthcare services, and
how well they thought their GP surgery provided care and support.
What did we do?
We looked at our database of people who had responded to a screening survey as part of the MAmMOTH (MAintaining MusculOskeleTal Health) study in 2015, but who had not been eligible to take part in the trial which followed the initial survey. We used this information to identify 825 people who had reported typical fibromyalgia symptoms or a fibromyalgia diagnosis, and had also all agreed to be contacted for future health studies.
We asked these people to complete a one-off postal questionnaire. This questionnaire included questions about symptoms (such as pain, fatigue, and sleeping difficulties), quality of life, work, number of consultations with GP surgeries and hospital departments, and their experiences of care in their GP surgeries.
We then allocated those who sent questionnaires back into three groups, and compared their answers:
people who had received a diagnosis of fibromyalgia
people who met the research criteria threshold for fibromyalgia (but who had not received a diagnosis); and
people who reported chronic pain (but neither met the research criteria threshold for, or had a diagnosis of, fibromyalgia).
People who did not ‘fit’ any of the above groups were excluded from the study.
What did we find?
People with a fibromyalgia diagnosis were more likely to be female and reported more negative experiences with GP care than the other two groups. We also found that it took people on average three years to be diagnosed, and this diagnosis happened most often in a hospital department (especially Rheumatology).
People in both fibromyalgia groups (those with a diagnosis or who met the research criteria threshold) were affected similarly by their symptoms, especially in their ability to function in daily life and to work. The impact of symptoms in these groups was much greater than in people with chronic pain.
Why does this matter?
The study highlights the urgent need for developing a model of care for fibromyalgia. Such a model can ensure that people are diagnosed as soon as possible, have access to evidence-based treatments and receive long-term support. To improve outcomes for all, it is important to be aware about the condition in men and focus on the wider, individual needs of people (such as wanting to continue to work).
We are grateful to patient partners Martin Buchan and Doug Dickson who provided input to the survey design, and to Debra DuLake and Simon Stones who provided comments on the manuscript. We are grateful for the input of Fibromyalgia Action UK to this programme of work.
We would also like to thank our PACFiND Public and Patient Involvement (PPI) Group in London for their feedback on this summary.
Who funded this work?
The survey is part of the PACFiND programme of work which is funded by Versus Arthritis. Stefanie Doebl was funded through a University of Aberdeen PhD studentship.
