Get a grip on glaucoma!A group based patient education programme to improve adherence to glaucoma eye drops

Heather Waterman Professor of Nursing & Ophthalmology

Jane Mottershead Glaucoma Specialist Nurse

• Glaucoma is progressive and incurable

• Treatable – medications for life

• Glaucoma is the leading cause of permanent blindness and partial sightedness worldwide (Quigley & Broman 2006)

Glaucoma

Adherence

• Poor adherence highly prevalent in chronic asymptomatic disease such as glaucoma

• Poor adherence can result in – • disease progression → visual loss → Quality of Life• additional medications • surgery• more hospital appointments• Increased costs

• Education and behaviour change interventions have been shown to improve adherence behaviour

Olthoff et al 2005; Sleath et al 2009; Hoevenaars et al 2008; Chen, Chen, Sun 2009

The evidence…

• Previous study showed :

• Minimal nursing input within the MREH OPD• Patients lack of knowledge about glaucoma• Poor rates of adherence to ocular hypotensive medication(Gray TA, Fenerty C, Harper R, Lee A, Spencer F,Campbell M, Henson DB, Waterman H. (2009)

• Comparable findings with other published research about patient knowledge and adherence to long term medications

Action research study Close collaboration between patients, researchers & clinicians

May 2009 - 2011

The research study

Aims

1. To investigate the mode of delivery, content & duration, patient health education needs, adherence

2. To pilot the group education programme, to test its

feasibility & acceptability

Long term vision – to carry out a full RCT & roll the programme out across the country if results favourable

The study overview

Aim 1 - Qualitative research• 27 patients with glaucoma• Face to face qualitative interviews to identify patients’ health education needs

Aim 2 – Before and after evaluation• 25 patients – 2 groups • Interviews immediately after & 3 months• Questionnaires – knowledge, illness perception, empowered, health beliefs• pre & post (immediately after & 3 months) educational intervention• M.E.M.S – medication event monitoring system to look at daily adherence patterns

Educational needs identified through listening to patients ‘…after that I was never

really officially diagnosed… nobody actually sat down

and explained to me what I had and why I had it’ Pt 04

‘you read books about it and it’ll scare the life out of you’ Pt 10

‘I think my biggest fear was actually putting

drops in my eyes’ Pt 03

‘I just said the drug was no good…I wasn’t using it, but if I had enough information, I would be using that drug, even if my eyes are reddish’ Pt 13

‘He said ‘…your pressure’s 17’ which didn’t particularly mean a lot to me at the time. [if] you haven’t a clue about the subject…you’ve no sensible questions’ Pt 11

‘…they didn’t warn me about the dangers, they did not warn me about …what the glaucoma…does to you, I’ve got glaucoma and that’s it’ Pt 15

‘I was reluctant, I don’t do very well with drugs. I’m a bit suspicious of them. I mean they’ve got to do their business and they’ve obviously got to be toxic .... But, err, yeah, I... I just don’t do medicines’ Pt 07

9 patient educational needs identified

1. To understand glaucoma

2. To understand their diagnosis/understand difficulties in giving a diagnosis

3. To understand the implications of eye drops, eye drop side effects & how to renew eye drops

4. To feel confident in putting eye drops in

5. To put condition into perspective

6. To feel confident asking questions of clinicians

7. To be able to navigate the healthcare system

8. To understand & manage their own adherence behaviour

9. To be able to access other information sources

• Patients’ opinions re group based education

Group based education

Patient opinions..

2 ½ hours

2 sessions

1 week apart

Programme run twice 2 groups of patients

Group based education

Session 1

•Group discussion: patient stories

•Professional narrative:

• A&P of the eye• Glaucoma• Eye drops

•Practical workshop

•Adherence planning:• Understanding and planning own

adherence • Self management plan

•Information sources & contact details

Programme content planned in response to listening to patients

Group based education

Session 2

• Feedback of action plans

• What to expect at an eye clinic appointment?

• Confidence building/asking questions

• Advice on DVLA

• Lifestyle advice

• Evaluation

Reflections on the session

• Liked the models and the A&P section• Practical sessions: patients liked been shown self instillation techniques or being

reassured that they were doing it right• Sorted out incorrect prescriptions 1-2 per group.• Worries about the DVLA for newly diagnosed• Voiced different reasons for non-adherence• None of the patients liked asking questions in clinic• Lifestyle section patients really liked this• Listened to others’ experiences• Younger people had googled glaucoma but not necessarily the right information

Post course participant evaluation

‘Every single person with glaucoma should be made to go on this course…it’s brilliant’ GB20

‘…it turned out to be very useful indeed in that he can now put in his own eye drops

and I don’t have to worry about being back home to do

it’ GB08’s carer

‘…liked the fact that they told us, when you go to clinic,

don’t be afraid to ask questions…so when I go next time I shall be firing all the questions (laughs)…GB01

‘I thought the course was fantastic…didn’t expect to learn as much as I did’ ‘Jane was an excellent teacher…very good at imparting knowledge’. GB14

‘Now I realise how little I knew about my own illness’ 2013

‘Not only enjoyable but educational as well. I have learnt loads’ 2013

- The education programme was very well received

Results

• We compared • Perceptions of glaucoma as an illness • Feelings of being enabled to look after their eyes• Beliefs about glaucoma medicines • Quality of life • Knowledge of glaucoma • Daily percent adherence

• Results demonstrate significant improvement in: • Illness perception • Empowerment • Health & wellbeing • Knowledge of glaucoma

most of which was maintained at the three month time point

• M.E.M.S - Mean percentage adherence was maintained at nearly 90% adherent for group one over time, 75% in group two, but only 30% for those who didnt attend the educational intervention.

In conclusion…

• Patients need not only information but also motivation & skills

• Patient participation leading to evidence based clinical practice

• Group based education shows promise in glaucoma - Majority of patients liked group based education finding it a positive experience

• BUT strategies to improve adherence need to be individualised

• Implementation of this programme redresses the balance of power between patients & clinicians towards partnership in care

• It empowers patients and builds confidence in self management of their disease

• Implementing at other hospitals

Since the trial….

• The programme is still running

• Each session is evaluated to ensure that patients opinions are consistently sought

• The programme is adapted as necessary based on the evaluations to ensure that patients needs and wishes are considered and respected.

• Evaluations continue to be positive

• Changing the way we recruit patients to ensure increased attendance

Acknowledgements

• Patients at the MREH• Staff at MREH, David Henson, Cecilia Fenerty, Fiona Spencer• Staff at University of Manchester School of Nursing, Midwifery and Social Work: Nicky

Olleveant, Mark Pilling, Cliff Richardson• Burdett Trust for Nursing for funding the study

Moving towards a partnership model of care

How could you listen to your patients?

How could you respond to your patients to develop a more enhanced partnership model of care?

What barriers do you anticipate in changing care?

How would you overcome these barriers?