Background/Purpose:

With an increasing demographic of ageing, more people may be living longer with a long-term health condition. There may be implications in terms of the knowledge, skills and expertise patients living with AS need to develop to manage their symptoms as they age. Our aim was to develop a greater understanding of the experience of ageing with AS and the needs of older people living with this condition. 

Methods:

Ethical approval was obtained for a qualitative study embedded within a longitudinal cohort study exploring the needs of people living with AS throughout the life course. Patients over 60 years were recruited from two Rheumatology outpatient clinics in the UK. Six focus groups were conducted to explore participants’ experiences through peer group discussion. The groups were recorded and transcribed. Transcripts were coded and a thematic analysis was conducted using NVIVO 10. 

Results:

Four women and 28 men consented to participate; average age 68 years (range 60-83). Eight participants were on biologics. Six participants were still in employment. Analysis identified 5 key themes:  1. ‘It doesn’t go away” describes how AS remains active as people age with continuing functional and symptomatic challenges. Positive and negative aspects of the tendency to normalise symptoms were identified. 2. ‘Wheels fall off after 60’ describes participants’ perceptions of their disease progression within the context of ‘normal ageing’. Additionally, they describe how they no longer felt out of place in comparison to their peers.  3. ‘Keep on pushing, keep on going’ describes the challenges of maintaining motivation to remain active and the importance of a positive mental attitude. Monitoring, trust and support from health care professionals is seen as being an integral part of this theme.  4. ‘Living a fulfilling life’ describes how participants developed ‘learnt expertise’ and made active choices about how they managed their AS with its imposed restrictions. 5. ‘Paying a price’ describes the significant psychological, physical and financial consequences associated with living with AS on participants and their families. 

Conclusion:

As people living with AS make the transition into retirement, many aspire to live active lives whilst facing new challenges in relation to their lifestyles and priorities. However, ageing is often seen as a time of decline in physical and mental function.  This coupled with a tendency to normalise symptoms highlights a continuing clinical need to monitor symptoms with an appreciation that the ‘older person’ faces some additional challenges. As well as monitoring, there is a need to offer tailored interventions to enable older people to remain active and to continue to lead the lives they choose within the context of an active and often debilitating condition.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/experiences-of-older-people-living-with-ankylosing-spondylitis/