Experiences of

older people living

with AS

Jane Martindale 1, 2 Elham Kashefi 2 Lynne Goodacre, 2 1 Wrightington Wigan and Leigh NHS Foundation Trust, 2 Lancaster University

Life course With an increasing demographic of ageing, people are living

longer before they die and the period of ill-health at the end of life

is also increasing.

More people are living with multiple long-term conditions. 3

Current policy concerns are with the changing demographics of

the ‘burden of ageing’ on health and service needs and are

centered around the issues of cost and burden on the social

agenda 4

Globally there is recognised awareness of the increasing burden

of long-term health conditions as populations age 5

3. Gomes, B, Higginson, I. Where people die (1974-2030): past trends, future projections and implications for care. Pallative Medicine. 2008; 22:23 4, Sanders, C, Donovan, J, Dieppe, P. (2002). The significance and consequences of having painful and disabled joints in older age: co-

existing accounts of normal and disrupted biographies. Sociology of Health and Illness; 24:2: 227-53

5. World Health Organisation (2005). Preventing chronic diseases: a vital investment.

http://www.who.int/chp/chronic_disease_report/en/index.html

Background The optimal management of AS requires a combination

of non - pharmacological and pharmacological treatment 4 with the principle objective of treatment being to reduce pain and stiffness, maintain mobility, good posture and general fitness.

Failure to prevent disease progression leads to a substantial proportion of subjects (40%) eventually developing severe spinal restriction 5

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.

4. Zochling, J, Van der Heijde, D, Burgos-Vargas, R, Collantes, E, Davis, J, Braun, J, et al. ASAS/EULAR Recommendations for the management of ankylosing spondylitis. Ann Rheum Dis, 2006; 65:442-452 5. Marzo-Ortega, H, McGonagal,D, Jarret, S et al. Infliximab in combination with methotrexate in active ankylosing spondylitis: a clinical and imaging study Ann Rheum Dis 2005;64:1568-1575

Aim

To develop a greater understanding of

the experience of ageing with AS and

the needs of older people.

Method

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.

Method

6 Focus groups were conducted at Wrightington Hospital (n=4) and the Royal Lancaster Infirmary (n=2) with each group containing between 4 and 7 participants to explore participants’ experiences through peer group discussion.

The focus groups were digitally recorded and transcribed verbatim. Anonymity was maintained using unique participant identification numbers.

Results 32 participants were recruited with an average age of 68

(range 60-83).

All were White British, with 4 women and 28 men.

Six of the participants were still working

Reported co-morbidities:

Iritis, Heart attacks, New artery in leg, Stent, Hip problems /

replacements, Knee replacement, Arthritis, Ischaemic heart

disease, COPD, Colitis, Bleeding in stomach, Crohns,

Prostate cancer, Heart bypass, Osteopenia, Osteoporosis,

Prostate problems, depression, Anxiety, Stress, TB

„Same backdrop but a changing

scene‟

Analysis identified 4 key themes:

1. ‘It doesn’t go away’

2. ‘Wheels fall off after 60’

3. ‘Keep on going, keep on pushing’

4. ‘A price to pay’

‘It doesn‟t go away’ AS remains active as people age with continuing

functioning and symptomatic challenges

Positive and negative aspects of how people feel about what is ‘normal’ symptomology for them

“As I‟ve got older it‟s altered, probably can‟t take the

pain the same. I don‟t know... it‟s everywhere now, completely everywhere, whereas it just started in my legs and then as it moved up into my back my legs went ok. ”

(male, retired, Focus Group 3, participant 2)

Pain Continuing to live with

Getting used to it Acceptance

Fatigue Constant

Worse now More than when younger

More restriction Fear of falling

Giving up hobbies But

Learning to adapt

Changes in symptoms

Unpredictable AS

a.Cope better- symptoms better

b.Cope better – symptoms worse

c.More difficult to cope with

Normalisation of symptoms Normalisation of pain

Pain described as ‘discomfort’ Not wanting to be seen as being

different or needy

„Your wheels fall off after

60‟ Describes the perceptions of how their AS has progressed

within the context of ‘normal ageing’

People describe how they no longer felt out of place in comparison to their peers

“It‟s the restrictions normally we know we are getting older and we know we are restricted in doing things but this sort of complaint restricts you even more. I mean, we know we can it puts on you isn‟t it, only do so much and you think to yourself well I‟m sixty-odd now or whatever, and you think well it‟s age now, I can‟t do it anymore.” (male participant, retired, on biologics, Focus Group 6, participant 3).

Retirement Seen as a positive stage in life

Some negative aspects Important to remain as active as possible

More time to manage symptoms

Ageing with AS Difficult to distinguish what was

‘normal ageing’ ‘Slowing down’ ‘aches and pains’ seen

as being an inevitable part of old age

Physical restriction of AS makes life

harder than for others without AS

Comparison to peers Some - different to their peers other than

physically slower

Others – peers now have more health problems

therefore less different now

Some- peers worse off now and had more

conspicuous illnesses

„Keep on going, keep on pushing‟

Describes the challenges of maintaining motivation to remain active and the importance of a positive mental attitude

Monitoring, trust and support of health care professionals seen as being an integral part of this

“My husband will say, “There she goes again, she says she‟s tired but look at her”, and it‟s because I‟m driving myself to keep going. I‟ve got to keep going. I‟m not going to let this beat me...” (female participant, retired, Focus Group 6, participant 5)

Positive Mental Attitude Essential in relation to ageing and AS

Some – not dwelling on the condition and distracting themselves with

activities

Others – coming to terms with AS – focus on what you can do and not

what you can’t ‘Getting the head right’ – crucial to being able to cope with AS

Motivation Wanting to remain active – supported by partners, dogs, up

bringing

Anxiety and guilt associated with not being active

Carrying on doing what you enjoy

Benefits of Physiotherapy and Secondary Care Regular monitoring motivates you to keep going with your

exercises

Extra targeted exercises if measurements decline helps

Regular ‘check ups’ have a positive psychological impact

‘Peace of mind’ ……………..‘You don’t worry as much’

„A price to pay‟

Describes the significant psychological, physical and financial consequences associated with living with AS on not only their own lives but also the impact this has had on their families

“I can‟t get out of my mind that if I hadn‟t suffered from this problem my stomach would be ok because the mixture of medication I‟ve taken over the years I‟m sure haven‟t done me any good overall. But given the choice of being in a wheelchair at 30 and taking the medicine and having a bad tum now, I‟ve not had a bad run, so yes it‟s easier to manage now”

(male participant, retired, Focus Group 3, participant 1).

Psychological issues Difficulties in making mental adjustments response to changes in symptoms

and other conditions Ageing meant it was more difficult to cope and that they had to come to terms

with changes Less tolerant and disappointed that not able to enjoy as active a retirement as

envisaged

Medication Some people had taken medication for over 50 years

Tried to avoid medication but other medical conditions meant they had to take more

Recognition of long term effects of medication and the consequences Biologics associated with better control of symptoms and ability to remain in

work

Impact on partners Mood is affected by AS and this impacts on their partners in a negative way –

becoming bad tempered and miserable when in pain, frustrated , tired and ‘taking it out’ on loved ones

Partners found the condition difficult to cope with Disturbing partners at night led to sleeping in separate beds or rooms

Impact on life Pain, fatigue and restriction impacted on everyday tasks – e.g. shopping,

cleaning, leisure activities, going out for meals and socialising Frustration felt with the inability to join in with what their loved ones were

doing or what they used to do Impacts on social activities of partner, work and social life including personal

well-being

Exercise Keeping active and doing exercise seen as a necessity to manage AS

Valuing members of the family motivating them to exercise and to be active is important

Other medical conditions impacted on the type of exercise that was possible Those on biologics reported they were able to exercise more and lead to more

active lives than before starting the treatment

Conclusions

AS remains active as people age and continues to have a significant impact on people’s lives and the lives of their families

It was not easy to separate what was the natural process of ageing from what may be symptoms of AS (such as fatigue, joint pain and slowing down).

Restriction placed on mobility due to the fusion of the spine and the neck was a distinguishing characteristic which was clearly attributable to AS and which had a significant impact on their health and well being.

Conclusions

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.

What could this mean for the

clinician?

Do we appreciate that AS remains active as people age and understand the continued impact on their lives (physical restriction, pain, fatigue)?

There is a normalisation’ of symptoms – Are our patients under reporting?

Does the transition into retirement with the desire to maintain active lifestyle create new challenges?

Are we able to recognise the impact of additional morbidities on how patients cope with their AS?

Older people are the experts in living with the condition but they have paid a price – do we appreciate the impact that this has had?

Acknowledgements All participants

Dr Lynne Goodacre

Dr Elham Kashefi

Clare Longton

Wrightington Wigan and Leigh NHS Foundation Trust

Lancaster University Medical School

NIHR

Thank you