Get a grip on glaucoma!

Transcription

1 Get a grip on glaucoma! A group based patient education programme to improve adherence to glaucoma eye drops Heather Waterman Jane Mottershead Professor of Nursing & Ophthalmology Glaucoma Specialist Nurse

2 Glaucoma Glaucoma is progressive and incurable Treatable medications for life Glaucoma is the leading cause of permanent blindness and partial sightedness worldwide (Quigley & Broman 2006)

3 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

4 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

5 The research study Action research study Close collaboration between patients, researchers & clinicians May 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

6 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

7 Educational needs identified through listening to patients 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 you read books about it and it ll scare the life out of you Pt 10 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 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 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

8 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

9 Group based education Patient opinions.. 2 ½ hours 2 sessions 1 week apart Programme run twice 2 groups of patients

10 Group based education Programme content planned in response to listening to patients 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

11 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

12 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

13 Post course participant evaluation - The education programme was very well received 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 Every single person with glaucoma should be made to go on this course it s brilliant GB20 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 Now I realise how little I knew about my own illness 2013 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 Not only enjoyable but educational as well. I have learnt loads 2013

14 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.

15 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

16 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

17 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

18 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?