Medication adherence post-stroke:An exploratory study of stroke survivors’ and

carers’ experiences of managing medication at home early after discharge.

Jo Gibson, Jackie Coupe, and Caroline WatkinsCollege of Health and WellbeingUniversity of Central Lancashire

jgibson4@uclan.ac.uk

Background

• Around a third of stroke survivors go on to have a subsequent stroke

• Strict adherence to all secondary prevention recommendations could reduce the risk of stroke recurrence by around 80% (Hackam and Spence 2007).

• Secondary prevention also addresses risk of cardiac events

• 2000 (1st edition) – • 2 pages on secondary

prevention (including references!)

• 2012 (4th edition ) – • 18 pages

National Clinical Guideline for Stroke

Why don’t people take their tablets?• Poor post-stroke medication adherence is a common and clinically

important problem

• Trials of interventions to improve adherence have had limited effectiveness (Lager at al, 2014)

• Trials have not been based on a comprehensive understanding of the factors which influence adherence.

Poor adherence

Practical barriersComplex regimeMotivational

barriers

• Risk of recurrence is highest early after stroke -important to identify and support patients before discharge• But may be too little, too late (e.g. review at 6

months!)• Stroke patients’ and carers’ concerns and difficulties

are poorly understood

Early after stroke…

• To explore stroke survivors’ and carers’ experiences of managing medication, including difficulties and strategies adopted, early after discharge

Aim of study

Method - recruitment• Stroke survivors discharged from acute or rehab stroke unit (< one

month)• Carer participation if wished• Eligibility: discharged to own home; not for end-of life care; any level

of post stroke disability including cognitive impairment and/or aphasia

• Approached in hospital shortly before discharge to ‘opt-in’ to contact

• Contacted by research team in first 2 weeks after discharge

Method – data collection• Individual semistructured interviews• Explored experiences of managing medication post-stroke

Practical issuesMotivational issuesStrategies

Challenges to recruitment!Interviewer: Firstly I’d just like to know about your experiences of taking medication after you came home after your strokeParticipant: it’s not been a problem really at allI: not been too much of a problemP: noI: okay

But then …• When I think about it now we did have a bit of a problem when I first

came home, because they gave me all my medications which was a huge great big bag, and we got home, I carried on with my tablets, we took, I don’t know how, but one of the boxes was left because me tablets were already done, because of that week’s tablets were already there and set out (in the tray) …I don’t remember them saying you’re on two lots of tablets…my head was all over the place at that stage, they might have said it, and it was only when my husband came to do my tablets up again that he found the clopidogrel tablet box (so that was a period of…) probably about four days

Participants• 9 patients (6 F)• 3 carers (1F)

• Aged 52-76• 6 patients lived with spouse/partner• 7 had first stroke / 2 had recurrent stroke• Typical length of stay from 2-4 days (range 1-31)

Medications• Typically on 5-6 different medications post-discharge (range 2 to 13)

• All but one had a change to their medication regime (typically 2 new medications)

• 3 were newly commenced on warfarin; one on dabigatran

Practical issues

Motivational issuesSolutions

Themes

• ‘I’m one–handed, and trying to get it out and not have the tablet go at 90 mph across the floor’ (male, aged 60, lives alone)

• There’s one or two on’t floor occasionally…then I have to find out when it was from... sometimes you’ve got to miss that particular one’ (husband of female, aged 55, uses ‘blister pack’)

Practical issues - dexterity

Practical issues - swallowing• None had persistent dysphagia

• But some had had transient swallowing problems earlier…

• It’s a big one, it takes a lot of water to get it down’ (female, aged 53, lives with husband)

Practical issues - cognition

• Cognitive impairment / temporary turmoil post-discharge!

• ‘I was still a bit confused with going home the day before’ (Female, aged 53, lives with husband)

• ‘You do forget… (you say) did I take that?’ (husband of female, aged 54

Practical issues - knowledge• Information given in hospital focused on the purpose of medication,

rather than on the practicalities of how to take it

• ‘they assumed that if I needed any help I would have asked’ (male, aged 76, lives alone)

• ‘what I perceived as the seriousness of the condition…I just had to do anything I could to make sure I wasn’t going before my time…’ (male, aged 52, lives with wife)

• ‘I hope it’s doing me some good… but I don’t know if it is...because I feel fine’ (female, aged, 77, lives with husband)

Motivational issues –preventive nature

Motivational issues – concerns about medication• ‘ there’s been a lot in the paper about statins and side effects’ (female,

aged 77, lives with husband)

• ‘I’ve no concerns, no side effects’ (male, aged 76, lives alone)

• ‘I’d like to be taking a lot less really… there’s too much, it gets on your nerves a bit’ (female, aged 55, lives with husband, 13 different medications) …’It’s a reminder that you’re not well’ (husband)

Warfarin – you can see it working!

• “Obviously if it’s thinning the blood from the blood counts (INR), it’s doing what it’s supposed to be doing … I have a look when they do it, I keep me eye on everything, but yeah I mean as long as that blood count now is what they want it to be” (female, aged 65, lives with husband)

Antiplatelets and others – lack of ‘evidence’

• I: do you feel the medication is doing you some good?

• P: ‘Well I hope so, see, because I don’t know do I, it’s thinning me blood…and so I’m hoping it is - I’ve not got any side effects’ (female, aged 53, lives with husband)

Strategies and solutions• Dosette boxes• Put the packet on kitchen worktop• Put daily dose in a small container • Remember to take when going out for day• Strict regime• Writing down Warfarin doses• Write dates on packet – cross off when taken• IPad and phone reminders• Make sure the dog’s not in the room

Carer support• (before the stroke) ‘I just presumed she were getting on with it and

she kept forgetting them…’ (husband of female, aged 55)

• ‘he took over – it was easier for him to keep his eye on than me’ (female, ages, 54, lives with husband)

• ‘he goes over the top a bit.. It was a shock for him too …so it was to ease his mind’ (female, aged 65, lives with husband)

Other carers• ‘At the beginning I used to get reminders from my brother in law and

sister in law, she says don’t forget to take the right amount’ (female, aged 71, lives alone)

• ‘since I came out of hospital (my neighbours) have dropped it in (prescription) and delivered it’ (male, aged 76, lives alone)

Evolving a system ‘I’ve got a routine because I have to have food as well with the medication. I have me breakfast at work (at a care home) - so I actually have the medication at work, at the same time as the residents take theirs’ (male, aged 52, lives with wife)

‘They should invent one person who can put it all together… a co-ordinator of pills’ (husband of female aged 55)

Conclusion• Stroke survivors and carers experience complex challenges in managing

medication early after stroke

• Shorter lengths of stay allow little time for patient education

• Health professionals in stroke and in primary care should ensure all patients receive tailored advice about how to manage their medication before and early after discharge

• Patients living alone, and those on multiple medications, may be in particular need of support

Acknowledgements• This study was funded by the General Nursing Council Trust for

England and Wales

• Thanks to the staff and patients of the stroke unit which hosted the study.