your hospitals, your health, our priorityST05_Mar12

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

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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. 1

• 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 2

• Globally there is recognised awareness of the increasing burden of long-term health conditions as populations age 3

1.. Gomes, B, Higginson, I. Where people die (1974-2030): past trends, future projections and implications for care. Pallative Medicine. 2008; 22:232, 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: 227-533. World Health Organisation (2005). Preventing chronic diseases: a vital investment. http://www.who.int/chp/chronic_disease_report/en/index.html

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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; 65:442-4525. 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

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Aim

To develop a greater understanding of the experience of ageing with AS and the needs of older people.

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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.

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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.

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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

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‘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’

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‘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)

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PainContinuing to live with

Getting used to itAcceptance

PainContinuing to live with

Getting used to itAcceptance

FatigueConstant

Worse nowMore than when

younger

FatigueConstant

Worse nowMore than when

younger

More restrictionFear of falling

Giving up hobbiesBut

Learning to adapt

More restrictionFear of falling

Giving up hobbiesBut

Learning to adapt

Changes in symptomsUnpredictable AS

a.Cope better- symptoms better

b.Cope better – symptoms worse

c.More difficult to cope with

Changes in symptomsUnpredictable AS

a.Cope better- symptoms better

b.Cope better – symptoms worse

c.More difficult to cope with

Normalisation of symptoms

Normalisation of painPain described as

‘discomfort’Not wanting to be seen as being different or needy

Normalisation of symptoms

Normalisation of painPain described as

‘discomfort’Not wanting to be seen as being different or needy

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‘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).

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RetirementSeen as a positive stage in life

Some negative aspectsImportant to remain as active as

possibleMore time to manage symptoms

RetirementSeen as a positive stage in life

Some negative aspectsImportant to remain as active as

possibleMore time to manage symptoms

Ageing with ASDifficult to distinguish what was

‘normal ageing’‘Slowing down’ ‘aches and pains’ seen as being an inevitable part

of old agePhysical restriction of AS makes

life harder than for others without AS

Ageing with ASDifficult to distinguish what was

‘normal ageing’‘Slowing down’ ‘aches and pains’ seen as being an inevitable part

of old agePhysical restriction of AS makes

life harder than for others without AS

Comparison to peersSome - different to their peers other

than physically slowerOthers – peers now have more health problems therefore less different nowSome- peers worse off now and had

more conspicuous illnesses

Comparison to peersSome - different to their peers other

than physically slowerOthers – peers now have more health problems therefore less different nowSome- peers worse off now and had

more conspicuous illnesses

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‘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)

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Positive Mental AttitudeEssential 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

Positive Mental AttitudeEssential 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

MotivationWanting to remain active – supported by partners,

dogs, up bringingAnxiety and guilt associated with not being active

Carrying on doing what you enjoy

MotivationWanting to remain active – supported by partners,

dogs, up bringingAnxiety 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’

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’

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‘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).

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Psychological issuesDifficulties in making mental adjustments response to changes in

symptoms and other conditionsAgeing meant it was more difficult to cope and that they had to come

to terms with changesLess tolerant and disappointed that not able to enjoy as active a

retirement as envisaged

Psychological issuesDifficulties in making mental adjustments response to changes in

symptoms and other conditionsAgeing meant it was more difficult to cope and that they had to come

to terms with changesLess tolerant and disappointed that not able to enjoy as active a

retirement as envisaged

MedicationSome 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

MedicationSome 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 partnersMood 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 onesPartners found the condition difficult to cope with

Disturbing partners at night led to sleeping in separate beds or rooms

Impact on partnersMood 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 onesPartners found the condition difficult to cope with

Disturbing partners at night led to sleeping in separate beds or rooms

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Impact on lifePain, fatigue and restriction impacted on everyday tasks – e.g. shopping, cleaning, leisure activities, going out for meals and

socialisingFrustration felt with the inability to join in with what their loved ones

were doing or what they used to doImpacts on social activities of partner, work and social life including

personal well-being

Impact on lifePain, fatigue and restriction impacted on everyday tasks – e.g. shopping, cleaning, leisure activities, going out for meals and

socialisingFrustration felt with the inability to join in with what their loved ones

were doing or what they used to doImpacts on social activities of partner, work and social life including

personal well-being

ExerciseKeeping active and doing exercise seen as a necessity to manage ASValuing 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

possibleThose on biologics reported they were able to exercise more and lead

to more active lives than before starting the treatment

ExerciseKeeping active and doing exercise seen as a necessity to manage ASValuing 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

possibleThose on biologics reported they were able to exercise more and lead

to more active lives than before starting the treatment

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Conclusion

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

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

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Conclusion

As people with AS make the transition into retirement, many aspire to continue to maintain an active life style prioritising and making the modifications that this may require.

Whilst current attention focuses on supporting transition into adult care, less attention is paid to supporting the transition into retirement which also require significant adjustments associated with this stage of life and the challenges this can pose.

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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?

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AcknowledgementsAll participantsDr Lynne GoodacreDr Elham Kashefi Clare LongtonWrightington Wigan and Leigh NHS Foundation Trust Lancaster University Medical SchoolNIHR

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Thank you