E vidence to - PowerPoint Presentation

Slide1

E

vidence to Support Prevention Implementation and Translation

ESPRIT

Marsha Tracey

PhD

researcher/ HRB Leader Award in DiabetesDept. of Epidemiology & Public Healthm.treacy@ucc.ie www.ucc.ie/en/esprit/

Understanding the

uptake

of a

national

r

etinopathy

s

creening

p

rogramme

:

the

p

atient

in

primary

c

are’s

perspectiveSlide2

Diabetic retinopathy

ESPRITLeading cause of preventable

vision lossIn 2013 prevention or early detection may have resulted in¹:

82% fewer new cases of blindness: adults aged 18–49 years 48% fewer new

cases of blindness: adults aged 50–69 years

National diabetic retinal screening programme introduced in 2013¹Tracey ML, McHugh SM, Fitzgerald AP, Buckley CM, Canavan RJ, Kearney PM. Trends in blindness due to diabetic retinopathy among adults aged 18–69years over a decade in Ireland. Diabetes Research and Clinical Practice. 2016 30;121:1-8.Slide3

D

iabetic retinopathy screening programmesESPRITVaried uptake:Ireland: 49%-80

%UK: 56%-90%Non-attendance increases risk of severe visual impairment

Ensuring a high uptake: challengingEssential to understand the

factors that facilitate or deter screening attendanceSlide4

Aims

ESPRITDetermine the registration rate & uptake of national retinal screening programme in two large primary care centresUnderstand the reasons why some people do & don’t attend this service

Explore individual experiences of the retinal screening appointment Slide5

Study design:

Sequential mixed-methods ESPRITSlide6

Documentary analysis

Semi-structured interviews (July 2014-Jan 2015): national diabetes working group members (n=19) Framework approach Intended & unintended outcomesQualitative evidence

ESPRIT

Phase 1 Slide7

ESPRIT

Phase 2

Audit of patients with diabetes (≥18 years) registered with 2 large primary care centres (GP n=20; patient n=44,000; diabetes n=750) Data extracted from medical records

Cross-sectional analysis: patterns & predictors of uptakeIdentify purposive sample of participants for qualitative interviewsSlide8

ESPRIT

Phase 3

Semi-structured interviews with purposive sample of patients:- Not-registered; non-consenters; non-attenders; attendersFramework approach Slide9

Findings

Phase 1: Attitudes & opinions of national stakeholders ESPRITSlide10

Outcomes: intended & unintended

ESPRIT

‘The programme expects a 20 per cent ‘do not attend’ rate....’

‘‘More than 120,000 people with diabetes have been invited to take part in the programme and about 50% have agreed to undergo testing….’

‘……

consent is low....but consent improved - was 30% now 40%...’

‘Trajectory

of

uptake is not as good as we had hoped

for

…..’Slide11

Context: variation in service delivery

ESPRITSlide12

How it was expected to work

Consenting to the programmeESPRIT

Context: variation in service delivery

RetinaScreen invitation letter‘This will benefit me’

Follow HCP advice Slide13

How it is actually working

Consenting to the programmeESPRIT

‘….. a lot of patients did get it and when I said

, ‘Did you get the letter?’ And they said, ‘Oh, yah, I threw it in the bin I didn’t know what that was about’. (#11)

‘..patients are saying to me, oh ya I got a letter [RetinaScreen] about that with a [county] address, sure I’m not going to go to [that county].

People think that because the address is [county] they shouldn’t go, so some of them phone them about it and others with the best of intentions never get to phone and that’s just it, and the letter is dumped.’ (#18) Slide14

How it is actually working

Consenting to the programmeESPRIT

‘In the first round of screening, more than 70,000 people have been screened in over 100 locations

since the programme commenced in 2013…..more and more people are consenting to be involved.’(David Keegan; Irish Times September 2015)Slide15

Phase 1 : Conclusions

ESPRITLack of quantitative data to examine patterns and predictors of uptake or registration (who is programme working for?)Unable to clarify why the programme is working for some but not for others

To be explored further in the subsequent phases of the studySlide16

Interim findings (site A)

Phase 2: Patterns & predictors of uptakeESPRITSlide17

Patterns of uptake

ESPRITMean age= 63.4

Male=62%T2DM=92%Not registered:25%

Uptake of programme:65% Eligible population who participated:50%

July 2015-August 2015Slide18

Predictors of uptake

ESPRITVariables1

Crude OR (

95% CI)(n=323)  pAdjusted

1 OR

(95% CI)(n=323)pDemographicsAge (years)Gender (female)Healthcare cover (medical card)

Married (yes)

0.9 (0.9-1.0)

1.2 (0.8-2.0)

1.5 (0.4-1.0)

1.6 (1.0-2.5)

0.5

0.4

0.1

0.06

0.9 (0.8-0.9)

1.2 (0.7-2.0)

1.7 (0.9-3.1)

1.7(1.1-2.8)

0.08

0.5

0.07

0.04

Medical factors

2

Diabetes type (type 2)

History of poor control (yes)

 2.4 (1.1-5.7)

 0.8 (0.5-1.3)

0.03

0.4

2.6 (1.4-10.3)

0.9 (0.5-1.4)

0.01

0.6

Screening history

Private ophthalmologist (yes)

Previous regional service (yes)

 0.8 (0.5-1.5)

2.1 (1.3-3.4)

0.6

<0.01

0.7 (0.4-1.4)

2.1 (1.3-3.5)

0.3

<0.01 Slide19

Interim findings (site A)

Phase 3: Experience & perspective of the eligible populationESPRITSlide20

Qualitative sample

21 interviews (Sept-Nov 2015)Non-registered: details not listed with screening programme (n=4)Non-consenters: non-responders to invitation letters (n=6)Attenders: responded to invitation letter; attended screening appointment (n=6)

Non-attenders: responded to invitation letter; did not attended screening appointment (n=5)

ESPRITSlide21

V

ariation in service deliveryESPRIT

Local optician

Private ophthalmologistLocal screening initiative

Secondary careSlide22

D

iabetes complicationsESPRIT

‘You need to look after this [diabetes], because if you don't there will be serious side-effects down the line….I suppose circulation, I'd say, and maybe eyesight. That would be the two biggest ones, I'd say.’(Non-consenter; T1DM #212)

‘Well I’m not sure [if screened for diabetic retinopathy], but I think I have because I go to [private ophthalmologist] and he checks for diabetic damage. Now is that the same thing?’ (Non-attender; T2DM #001)Slide23

Lack

of awareness: introduction of national screening programme ESPRIT

‘I actually got a letter out about it [RetinaScreen], about participating in it

. It was voluntary, really, it was up to yourself if you wanted to do it or not. There was no pressure really, and I didn’t actually do it….I didn’t actually know it existed until I actually got the letter out in post’ (Non-consenter; T1DM #324)Slide24

Factors for non-registration

ESPRIT

“I think I was surprised because I’d never heard of it [RetinaScreen] before or seen it before…. I said it must have been new.” (Not registered; diagnosed 2014; T2DM #335)Recent diabetes diagnosis Slide25

Barriers to consenting

ESPRIT

“Yeah, good. But probably not for me. The fact that I had already had the operation [injections for diabetic retinopathy, 12 years ago], and I was going to my own doctor anyway, I didn't see much advantage to me.” (Non-consenter; T1DM #211)

‘Yes, I got a letter [from RetinaScreen] in the post. I think it was last year, maybe before, and I put it in the bin because, as I said, I go to my own fella… I just thought, oh I don’t need to go there, because I go anyway, and I just left it at that..’ (Non-consenter; T1DM #213)Slide26

Non-consenters

ESPRITUncertainty with own decision not to consent

‘Where does this take us? Do you advise that…I'm going to [private ophthalmologist] under care in [county], should I get screened by

this [RetinaScreen]?’(Non-consenter; T1DM #238)Slide27

Barriers to consenting

ESPRITPerceived differences in quality of services

Limited contact with health servicesEase of access & familiarity of existing provider

Difficulty with diabetes diagnosis ‘…

If you are being done privately then the private consultant has to do it, whereas if you are going as a public patient anybody can operate on you or treat you or

whatever….’(Non-consenter; T1DM #213)“Dr [private ophthalmologist] is handy,

[it’s] only 20 minutes away from my house, so it’s just convenient

as well... It’s just

when you’re use to something you’re not going to really change, it’s hard to change

over

…”

(Non-consenter; T1DM #322)Slide28

Factors for non-

attendence ESPRIT

“But I imagine he [local optician] must be part of it because when I showed him the letter, and he said, ‘that’s ok, I do the very same thing’…He obviously must be one of the people on the…they [RetinaScreen] must have a panel

” (Non-attender; T2DM #269)Slide29

Facilitators to attendance

ESPRITJustify change in service provision

Prompt from healthcare professionalFree service

Fear of complications‘….

When I received this letter from [county].... I remember thinking, oh that’s a bit strange, that it’s coming from [county], from the HSE… but

I thought, well okay, if they are taking control of all of the results, fair enough’ (Attender; T1DM #007)‘I thought it was great, because I’m on the pension now. I said at least I’ll have that checked every year.

Because [the private ophthalmologist] is very expensive. It’s 160 Euros a visit. I said, “Maybe that will cover that

.

’

(Attender; T1DM #050)Slide30

Attenders: Experience of screening appointment

ESPRITSlide31

Attenders

ESPRITUncertainty of service provided by RetinaScreen

‘… It’s just are they [RetinaScreen] just testing for one specific thing or do I still have to go to the other specialist to test for other things? I don’t know

.… I’m not a doctor, so I don’t know. Is [private ophthalmologist] testing for other things? I don’t know. So I’m going to ask him.’ (Attender; T1DM #050) Slide32

Participants recommendations

Improve uptakeHealthcare professionals should be pushing patients Contact via text messageMore education for people with diabetesCommunication between specialists & programme

Campaign led at local level

Social media for advertising

ESPRITSlide33

Conclusion

ESPRITConfusion around terms ‘diabetic retinopathy’ or ‘screening for diabetic retinopathy’

Uptake may be improved if layman’s terms used in advertising and recruitment activities

Issues regarding the invitation letter highlightedInvitation letters on primary care headed paper may

address the unfamiliarity highlighted by participants

Uncertainty around change in service provision Healthcare providers could discuss with patients to

clarify purpose of RetinaScreen Slide34

Next step….

ESPRITData collection in second site complete:326 people with diabetes28 interviews completed

Opportunity to verify findings in a different contextSlide35

Acknowledgements

ESPRITProfessor Patricia Kearney Dr Sheena Mc Hugh

All participantsHRB Research Leader Award Slide36

Thank you for your time

ESPRITAny questions?