Women and Axial Spondyloarthritis: The Way Forward

Women and Axial Spondyloarthritis: The Way Forward

When I began working in Rheumatology, I predominantly worked with groups of men, aged over 40, and having a diagnosis of Ankylosing Spondylitis. Over nearly a decade of working in the field, I have seen an immense shift in the demographic of axial spondyloarthritis patients.  In recent years I have worked with more mixed gender groups, some women-only groups, ranging from 18-80 years of age. This likely reflects our expanding knowledge and diagnostic capabilities, and to a large degree, the use of MRI to demonstrate early or discrete inflammatory changes in the spine and sacroiliac joints, indicative of what is now termed, axial spondyloarthritis (axSpA).

In recent years attention has turned to the disease path of women with axial SpA and how this can differ from men with the same condition. Below is a summary of some of these findings and an explanation of our role as therapists in improving outcomes for female patients.

Delay in diagnosis

The umbrella term of axial spondyloarthritis, includes both ankylosing spondylitis (or radiographic axial SpA), where changes to the spine and pelvis are seen on x-ray and non-radiographic axSpA where inflammatory changes are seen only on specific MRI sequences. Generally, equal numbers of men and women are diagnosed with non-radiographic axSpA but men are more likely to develop progressive bone growth and therefore ankylosing spondylitis. The presence of more readily detectable changes on imaging may help explain way the current average delay in diagnosis is around 8.2 years for women vs 6.1 for men (ASIF, 2020). X-ray is a cheaper and more readily used form of imaging in primary care, whereas the use of MRI sequence confirm axSpA is often only applied where the clinician will  already have some degree of suspicion.

The disparity in diagnosis may also be due to a less classic, “barn-door” presentation of axSpA among women; they tend to have more peripheral symptoms (enthesitis, dactylitis) and widespread pain* perhaps mimicking other conditions if not viewed in wider context. However, even the women I have met with very classic, axial-only symptoms, have often described how their early symptoms were explained (either by themselves or by clinicians) as being related to pregnancy or childbirth.

The literature suggests women tend to have more extra articular manifestations (EAMS) such as; anterior uveitis, psoriasis and inflammatory bowel disease. The presence of EAMS could be key clues to aid diagnosis if recognised by a health professional with knowledge of the signs and symptoms of axSpA.

The National Axial Spondyloarthritis Society (NASS) have recently launched their Gold Standard Time to Diagnosis programme; https://nass.co.uk/get-involved/gold-standard , aiming to reduce the delay in diagnosis from 8 years to just 1 year. Educating health professionals to recognise the diverse presentation of axSpA, particularly in it’s early stages and in women will be key to achieving this.

Disease Burden

Evidence suggests the subjective burden of axSpA is higher in women than men. A 2020 review of the literature surrounding gender differences in AxSpA by Wright et al. describes higher self-reported functional loss, higher fatigue, more pain and lower quality of life among women with axSpA compared to men. From the research I have co-authored around sleep in axSpA, we also found sleep to be poorer in women and associated with higher levels of anxiety and depression (Wadeley et al., 2018). So perhaps the impact of AxSpA may be greater in women or, at least, they are more likely to tell us so. We must be cautious not to interpret this as women over-reporting symptoms; it may be a case that men with axSpA are less likely to tell us just how much they are suffering and access the help they need.

Pregnancy and Childbirth

Women with axSpA have higher levels of pre-term births and caesarean section (Hamroun et al., 2020) with no increase in miscarriage or still births. There is also suggestion that active disease is a predictor for pre-term delivery (Zbinden et al., 2018)

As therapists we may play a key role in modifying disease activity through appropriate exercise prescription and advice on pain, fatigue and sleep management. Having worked in obstetrics, I can see the areas of overlap but also key differences in exercises prescribed in pregnancy and for axSpA. Modifications to stretching regimes may be needed but also particular attention to rib expansion exercises and maintaining general activity and function. Advice on sleeping positions, relaxation techniques and pacing can be helpful for all women in pregnancy. Hydrotherapy can be a great way for pregnant women to maintain mobility in the later stages of pregnancy and can help with pain relief. Sadly, many women will not be able to access a pool at the moment due to covid precautions.

Pelvic floor dysfunction

Watching an excellent webinar by Elaine Miller (@GussieGrips) as part of the Therapies Live event in May, I was struck by how prevalent continence problems are among women in the general population. Pelvic pain and pelvic floor dysfunction can be closely linked and given that sacroiliac pain is a key feature of axSpA, it may follow that there is a higher prevalence of pelvic floor dysfunction among women with AxSpA. To my knowledge, female continence issues in axSpA have not been formerly researched or explored (please correct me if I have missed any studies) but a higher level of sexual dysfunction has been reported in women with AS (Sariyildiz et al., 2013). I would therefore encourage therapists to have a conversation with their female (and male) patients around continence and sexual dysfunction and seek advice/refer on to their pelvic health colleagues. This is not comfortable ground for us MSK/ rheum physios but given that continence problems can be a real barrier to exercise and physical activity, it should be a key part of our treatment plan. www.gussetgripper is a great resource for patients and therapists and a good lesson in working outside your comfort-zone!

Emily

References:

Hamroun S. et al. FR10305 Fertility and pregnancy outcomes in women with spondyloarthritis: a systematic review and meta-analysis. 2020. Annals of Rheumatic Diseases, conference abstract and poster presentation. 79:S1

Sariyildiz M A, et al. The impact of anklylosing spondylitis in female sexual functions. International Journal of Impotence Research. 2013. 25:104-108

Wadeley et al. Sleep in ankylosing spondylitits and non-radiographic axial spondyloarthritis: associations with disease activity, gender and mood. Clinical Rheumatology. 2018. 37(4):1045-1052

Wright G et al. Understanding differences between men and women with axial spondyloarthritis. Seminars in Arthritis and Rheumatism. 2020. 50: 687-694

Zbinden A et al. Risk for adverse pregnancy outcomes in axial spondyloarthritis and rheumatoid arthritis: disease activity matters. Rheumatology 2018.57(7):1235-1242

Infographic: www.asif.info