6 December, 2022
- Women wait an average of 2 years longer than men for a diagnosis of axial spondyloarthritis (axial SpA)
- Axial SpA can affect both men and women. However, there is still a myth that it is a condition that predominantly affects men
- 61% of women who responded to the NASS survey agreed with the statement ‘I didn’t feel believed by health professionals when I was trying to get my diagnosis’ (compared to 43% of men)
- Twice as many females than male respondents felt like their health professional was not committed to finding the true source of their pain
- In total, 44% of women reported having a negative experience with their healthcare professional compared to 25% of men
- Research commissioned by NASS also discovered that a delayed diagnosis carries a heavier financial burden for women than men
- Both men and women experience significant issues with diagnosis and care of the condition, but too often the charity NASS hears from women who have been dismissed and disbelieved based on their gender.
Women with axial spondyloarthritis (axial SpA) wait an average of 2 years longer than men for a diagnosis and are less satisfied with the care they receive, according to new research commissioned by the National Axial Spondyloarthritis Society (NASS).
Axial SpA is an inflammatory condition of the spine and joints, that, if left untreated, can lead to spinal fusion. Around 1 in 200 people in the UK live with the condition, it’s as common as MS and Parkinson’s combined.
Axial SpA can affect both men and women. However, there is still a myth that it is a condition that predominantly affects men.
On average it takes 8.5 years for someone to receive a diagnosis of axial SpA but this new research from NASS, and a similar study commissioned by the Axial Spondyloarthritis International Federation (ASIF), the International Map of Axial Spondyloarthritis (IMAS) UK survey, have both found that on average women wait longer and are forced to fight harder for answers than men.
Symptoms of axial SpA include persistent pain in the lower back (more than 3 months), pain that eases with movement, causes night-time waking and morning stiffness. Pre-diagnosis, women are more likely to feel like their symptoms are not taken seriously by GPs and other primary care professionals – 61% of women who responded to the NASS survey agreed with the statement ‘I didn’t feel believed by health professionals when I was trying to get my diagnosis’ (compared to 43% of men).
Rowan Lutton, 42, is a mother-of-three from Perthshire in Scotland. She explained: “I spent 5 years looking for answers before I was diagnosed with axial SpA. I repeatedly visited my doctor and other health professionals during this time. I explained that I had a family history of the condition but was told axial SpA only affected men. At the time, it was suggested that my pain could be attributed to my mental health, which was ironic as the only thing causing me extreme distress and frustration was being fobbed off by clinicians with no interest in investigating my symptoms. Every appointment felt like I was screaming into the wind. It didn’t feel heard and didn’t know if or when I would get the help I needed.”
Bethany Dawson, 23, is a journalist from London. She lived in fear of her undiagnosed pain before receiving a diagnosis of axial SpA after six years of fighting for recognition. She speaks of being passed from one hospital department to the next and feeling like no one was taking her seriously:
“At the age of 17, I saw a rheumatologist and explained what my life was like: pain, exhaustion, and depression. At this point I had been in pain for 5 years, and I was exhausted. I could see no hope of living in any other way, I could see no life beyond this struggle.
“The rheumatologist looked me up and down and told me it was all in my head: ‘Everyone experiences pain, you’re just processing it differently,” he said. All I could do was cry.
“Throughout my teenage years, people thought that because my brother lives with a disability (Down’s Syndrome), or just because I was a teenage girl, I was looking for attention. Others thought I was just overdramatic. Their first port of call was to decide I was lying, rather than to believe me. That was the easy option for them, and the option that ruined my teenage years.”
Rowan and Bethany are not alone in feeling dismissed. Twice as many females than male respondents felt that their health professional was not committed to finding the true source of their pain when they were looking for a diagnosis. The survey also found that once diagnosed, women are more likely to be dissatisfied with the care they receive. In total, 44% of women reported having a negative experience with their healthcare professional compared to 25% of men.
The research, which was commissioned by NASS and conducted by Headstrong Thinking Limited, surveyed a sample of 938 people living with axial SpA between February – April 2022.
In a separate piece of research, NASS has also learned that the financial burden of a delayed diagnosis is heavier for women than men. On average, women spend £54.7k managing their condition while they wait for a diagnosis, compared to men who spend £53k. Women also interact with healthcare services more, costing the NHS £8.6k, compared to £7.8k from men*.
Dr Dale Webb, CEO at NASS, commented: “For years, axial SpA has been under-prioritised and overlooked by the healthcare system. Both men and women experience significant issues with diagnosis and care of the condition, but too often we hear from women who have been dismissed and disbelieved based on their gender. This is not acceptable.
“At NASS, we want everyone with axial SpA to receive a swift diagnosis and the best care. This research was commissioned to help us develop a patient centred set of Quality Standards of care to match the clinical standards already in use. But it has also highlighted disparities in the experiences of different groups which need to be understood and addressed.”
NASS is campaigning to ensure that everyone with axial SpA receives a timely diagnosis and the best quality of care.
For more information please contact Fiona MacAulay, Communications Manager at NASS on: fionamacaulay@nass.co.uk or 07957356220
Read the full research report here.
Watch the campaign video here.
END
About the National Axial Spondyloarthritis Society (NASS)
At NASS we transform the diagnosis and care of people living with axial SpA. Axial SpA works silently. We don’t.
About the Patient Values Research
Services for the diagnosis and treatment of axial SpA clinical care are informed in the UK by NICE Guideline 65 (2017) and Quality Standard 170 (2018), and internationally by the European Alliance of Associations for Rheumatology (EULAR) Recommendations (updated in 2022) and the Assessment of Spondyloarthritis Society (ASAS) Quality Standards (2020).
Whilst there was some patient input into the development of these documents, they express a predominantly clinician-based view of what should be provided in diagnosing and managing axial SpA.
NASS commissioned Headstrong Thinking Limited to undertake independent research with a sample of 938 people living with axial SpA. The study aimed to identify the needs and values of people living with axial SpA in diagnosing and managing the condition and to assess the extent to which these are reflected in people’s experiences of services.
This research was funded by the Aspiring to Excellence programme which is led by NASS in partnership with BritSpA and the NHS Transformation Unit and sponsored by Abbvie, Biogen, Lilly, Novartis and UCB.
About the International Map of Axial Spondyloarthritis (IMAS)
The International Map of Axial Spondyloarthritis (IMAS) UK is part of a wider international project. This is a collaboration between the Health & Territory Research (HTR) group of the University of Seville, The National Axial Spondyloarthritis Society (NASS) the Axial Spondyloarthritis International Federation (ASIF), a steering committee composed of patient representatives and internationally recognized rheumatologists, psychologists, and physiotherapists specialized in the field of axial SpA, and Novartis Pharma AG. IMAS has an overarching aim of expanding knowledge of axial SpA to raise awareness of the impact of the disease on people living with the condition. 374 people completed the IMAS UK survey.
About the Health Economics Research
*This statistic was taken from: Howard Wilsher, S., Afolabi, O., Mishra, M., Xydopoulos, G., Zanghelini, F. and Fordham, R., 2022. The Economic Cost of Delayed Diagnosis of Axial Spondyloarthritis in the UK. London; The National Axial Spondyloarthritis Society.
The research was commissioned by NASS and carried out by the University of East Anglia. To develop the model, a mixed methods approach was taken that included semi-structured interviews with key stakeholders (12 clinicians, 4 people living with axial SpA) to understand the experiences and impacts of delayed diagnosis and the costs incurred, survey data and data sets of anonymised patient information. Stakeholders also assisted in validation of the model. The research is part of the Act on Axial SpA campaign from NASS, which is fully funded by UCB.