Work productivity: What are the key issues for people with ankylosing spondylitis?
Ankylosing spondylitis (AS) is a chronic inflammatory condition affecting the skeleton. It affects approximately 200,000 people in the UK with the main symptom being back pain. It typically affects people from a young age, often having a detrimental impact on health and wellbeing, and is associated with significant risk of limiting work productivity over the life course.
Relatively little attention has been paid to issues regarding work productivity in AS. Consequently, there is an urgent need not only to understand better the different perspectives of people with AS, of health professionals, of health service managers, and of employers, but also to embed issues pertinent to work productivity as a routine element of healthcare.
One major issue is that people with AS may face uncertainty as to whether to disclose to family, friends and or work colleagues that they are suffering from back pain due to a fear of stigmatization. We have now explored the aspect of disclosure, especially within the work place, to help develop a better understanding of the experiences that people with AS face in sharing their diagnosis.
Our qualitative study (Shukla et al 2017) found that participants had discussed their diagnosis and symptoms to varying levels with employers, family members, friends and healthcare professionals. They had decided on the level of disclosure after assessing the risks and potential benefits. On a positive note, they were able to find support from work colleagues and family but this was sometimes riddled with challenges. In addition, the specialist physiotherapy team were able to offer much needed physical and psychological support. However, despite disclosing their diagnosis, participants remained fearful of stigmatisation especially at work, resulting in psychological distress, which was amplified by the lack of awareness about the condition.
We would recommend that employers, healthcare professionals and family members should not underestimate the challenges faced by individuals when deciding whether to disclose this ‘hidden disability’. Offering support and encouragement to empower individuals with AS/Axial SpA to successfully disclose their diagnosis should they choose to should be taken into account as a routine element of clinical care.
- Dr Rudresh Shukla ACF in Rheumatology, Lancaster University
- Dr Jane Martindale Honorary Researcher, Lancaster University and Extended Scope Physiotherapist and Therapy Research Lead, Wrightington, Wigan and Leigh NHS Foundation Trust
- Dr Paula Holland Lecturer in Public Health, Lancaster University
- Professor John Goodacre Director, Lancaster Health Hub
Shukla R, Martindale J, Gladston-Chelliah E, Goodacre J. (2017). ‘Let’s talk about inflammatory back pain: a qualitative study regarding experiences of disclosure in people with Ankylosing Spondylitis/Axial Spondylitis.’ Rheumatology 2017;56, Supplement 2.