Service Innovation to Help People Live Well with Diabetes and Reduce Sight Loss

Service innovation to help people live well with diabetes and reduce sight loss

Author:Helen Lee;Publisher:RNIB;Year of Publication: 2015

Key findings

• A suit of interventions were piloted in Bradford to increase uptake of diabetic eye care services and improve self management of diabetes.
• Attendance at Diabetic Retinopathy Screening (DRS) increased by 15% amongst the target population.
• Non attendance (DNA) at Diabetic Retinopathy outpatient clinics fell by 4% amongst the target population.
• Exposure to information about eye health and diabetes increased by 9%.
• There was a 15% increase in understanding of the need to attend both eye examinations and DRS and a 23% increase in understanding about the need to check blood sugars and attend appointments to reduce the risk of complications.
• The ‘Living Well with Diabetes’ intervention to improve self management was popular with GP practices. Three local Clinical Commissioning Groups extended funding for the work to reach a further 12,000 patients.

Background

Diabetic eye disease is one of the leading causes of certifiable sightloss amongst the working age population in the UK (1). It results from damage to the small blood vessels in the retina caused by prolonged exposure to high blood glucose levels. Longer duration of living with diabetes and poorer glycaemia and blood pressure control is strongly associated with diabetic retinopathy.

Six percent of the UK adult population is currently diagnosed with diabetes; this is 3.2 million people. It is expected that this will increase to 4.6 million people (9.5% of the adult population) by 2030. There are also hundreds of thousands of people living with undiagnosed diabetes (2).

Some communities are more at risk of diabetes than others. Living in socio-economic deprivation is closely linked to developing diabetes (2). People of South Asian ethnicity are up to six times more likely to develop diabetes compared to the general population (3).

An estimated ten percent of NHS expenditure is spent on tackling diabetes (4).

This research briefing presents the evaluation findings from a collaborative initiative between RNIB, Action for Blind People, NHS Bradford and Airedale, Bradford Royal Infirmary, Bradford and Airedale Diabetic Eye Screening Programme, GP practices in Keighley, The London School of Hygiene and Tropical Medicine and the community of Bradford. The project was jointly funded by RNIB and the Department of Health through the Excellence and Strategic Development Fund (IESD). Work on the project began in 2011 and continued until 2014.

Methods

The aim of the pilot project was to develop and test interventions to increase access to eye care services and improve patient self-management of diabetes to prevent avoidable sight loss. This consisted of increasing the uptake of Diabetic Retinopathy Screening (DRS), eye examinations, attendance at secondary care diabetic eye clinics and the understanding of eye health and its relationship with diabetes. The original target population was people of Pakistani heritage aged 40 to 65 living with diabetes in Keighley, an area of Bradford in Northern England. As the project developed some of the initiatives targeted people of all ethnicities living with diagnosed diabetes.

Several pieces of work informed the development of the interventions piloted in Bradford including an eye health equity profile, (5) and qualitative research with service providers and users about the barriers that affect access to primary and secondary eye care services and DRS (6).

The interventions piloted:

1. All patients in the Bradford and Airedale area, irrespective of age or ethnicity, with a DRS appointment were sent a text reminder.
2. A part-time bilingual administrator telephoned people, irrespective of age or ethnicity, to remind them of their hospital appointment at the diabetic retinopathy clinic.
3. Community engagement activities in Keighley included:

• Just over 400 people of Pakistani heritage diagnosed with diabetes aged 40 to 65 received a ‘Living Well with Diabetes’ self management folder. The folder was designed to help patients keep a record of their appointments to monitor their blood pressure, HbA1c, cholesterol, weight/BMI, medications and to facilitate discussion between health professionals and patients about lifestyle changes to manage diabetes.
• Health professionals including practice nurses, GPs, pharmacists and opticians in Keighley were encouraged to give patients consistent messages about diabetes. There was a leaflet available for professionals to give to patients to reinforce these messages.
• Community and religious leaders were encouraged to also give consistent messages about healthy living to help prevent the development of diabetes and management of the condition. A traditional Sufi story ‘Tether my Camel’ drawing on the Islamic faith of the community, was used as a focus for discussion to challenge a sense of fatalism and encourage people to take responsibility for their health.

Method

The London School of Hygiene and Tropical Medicine conducted independent evaluation using a range of different tools including:

• Routine DRS uptake and non-attendance (DNA) data
• Routine hospital outpatients data about attendance and non-attendance
• Logs collecting mobile phone number coverage and recall of text reminders
• Logs monitoring the allocation of project staff time, activities and contact with stakeholders
• Logs monitoring attendance at optometric practices. Optometry practices in Keighley and in the comparison site Manningham agreed to keep a record of patients of Pakistani heritage aged 40 to 65 attending for an eye examination during two periods pre and post the intervention. However post intervention optometric practices in Keighley did not provide the data.
• Before and after a postal questionnaire survey was sent via GP Practices to people diagnosed with diabetes aged 40 to 65 of Pakistani heritage in Keighley, the intervention site, and a control site Manningham in central Bradford. The survey sought to assess patients’ knowledge, awareness and behaviours
• Eleven qualitative interviews with key professional stakeholders
• Eight qualitative interviews with patients.

Findings

3.1 Outcome evaluation

3.1.1 Attendance at DRS

The proportion of eligible patients being screened increased steadily, with 82% screened in the last quarter of 2013/14 in Keighley, from a baseline of 67%. The absolute number of diabetics registered for screening also rose steadily.

At the start of the project fewer than 1 in 5 Keighley registered patients, attending DRS at the Bradford Royal Infirmary (BRI), had a correct mobile number recorded on the system. By the end of data collection, this had risen to nearly half.

Amongst patients who had a correct mobile number on the DRS system, the vast majority recalled receiving a text and the text messages were almost unanimously well received with respondents finding them helpful.

Correct mobile numbers were recorded for on average 3 out of 10 patients of Pakistani heritage aged 40 to 65 living in Keighley. It was not known why a number was not recorded for more patients: it may have been that DRS staff did not have time to collect the mobile number or patients did not own a mobile.

Attendance at DRS increased in both the intervention and comparison sites. Routine data from 7,313 patients (ethnicity is not recorded on this data) indicated that at baseline 67.7% of patients from Keighley had attended screening in the previous twelve months. Post intervention this had risen to 82.2%. So the increase post intervention amongst patients at participating GP Practices in Keighley was 15% higher compared to 10% higher in non-participating practices.

Survey and routine data provided slightly different findings. 46/453 patients responded to the pre-survey and 61/446 to the post-survey in the intervention area. At baseline 91% reported attending DRS. Post intervention 98% of patients reported attending.

3.1.2 Attendance at hospital diabetic retinopathy appointments

The bilingual worker telephoned people of all ages and all ethnicities. There was a 45% increase in the number of people invited to attend the Diabetic Retinopathy (DR) outpatients clinic over the lifetime of the project. The average non attendance (DNA) for all patients fell over the three years (24% to 23%) but by a greater amount amongst Pakistani patients (27% to 23%).

DNAs among the White British population increased over the time period from 16% to 19%, amongst ‘other whites’ from 20% to 34% and in ‘other Asian’ from 30% to 35%.

The total number of patients aged 40-65 years on the DR outpatient clinic list at the BRI was 1,644 in 2011-12, rising to 2,383 in 2013-14. Those of Pakistani heritage constituted the largest group (39% of the total), followed by White British (28%). Half of the total cohort was classified as South Asian when combining all Asian ethnicities.

The project worker made an average of 472 calls and successfully contacted 271 people per month (the ratio of calls made to contact was 1.74).

The telephone reminder call was well received by patients. However the administrator was not able to rearrange appointments:he was only able to provide patients with a number for them to phone to rebook. A more seamless system which avoided the patient having to make an additional telephone call to reschedule an appointment might be more efficient.

Some patients felt the time lag between the original appointment letter and the appointment date was too long. Many patients complained that their appointment had been changed by the hospital, sometimes several times. Patients said they got late cancellations and this was problematic as they had booked time off work or arranged for relatives to accompany them.

Key to the successful implementation of this intervention was having institutional support to overcome logistical challenges.

3.1.3 Attendance for eye examinations

It was problematic to measure the impact of the interventions on uptake of eye examinations because the optometric practices in Keighley did not return post intervention data.

The only data available was from the postal questionnaire survey. At baseline 72% of respondents had attended an eye examination in the previous twelve months, post intervention 71% had.

3.1.4 Understanding of eye health and its relationship to diabetes

There were some positive changes in knowledge and understanding amongst Pakistani people with diabetes in Keighley aged 40 to 65 but it was not consistent across all topics.

At baseline 38% of the 61 people who completed the survey had read, seen or heard information about eye health in the previous twelve months. Post intervention this had increased to 47% of respondents.

People with diabetes should attend an annual eye examination at an optician. At baseline 84% of respondents knew this, post intervention this fell to 71% of respondents. However understanding about the need to attend for both an eye examination and DRS increased from 78% to 93%.

A slightly higher proportion of survey respondents recognised that blindness was a potential complication from diabetes post intervention (71% at baseline to 79% post intervention). There was an increase in understanding of how to reduce complications from diabetes. At baseline 57% of respondents knew they needed to check their blood sugars and attend appointments, post intervention this increased to 80%.

3.2 Process evaluation

3.2.1 The development of the community engagement strategy in Keighley

The community engagement strategy for Keighley was developed using a co-production methodology involving service users, providers and commissioners. The methods used for the design workshops were Appreciative Inquiry and Design Thinking

Appreciative inquiry was used to allow people to identify what they perceive currently works best in their workplace or service, what they identified as the strengths of current situation, and what actions they might take to make a positive difference. This process was used to create a vision of the ideal which helped to inform the design of the interventions and facilitated the planning phase to move towards implementation of that vision (Cooperrider and McQuaid 2012).

Alongside this Design Thinking provided a guided process that enabled people of all abilities to translate the ideas elicited through the appreciative inquiry into workable products and services (Brown 2009).

Working with the ‘whole-system’ of stakeholders was used in response to the conclusions of the insight research. It is increasingly used in healthcare prioritisation and planning. The project included a wide range of people involved in the care of people with diabetes and eye care, and encompassed patients, their relatives, optometrists, practice nurses, GPs, GP practice managers, ophthalmology staff, social care staff, public health and health research staff and voluntary sector organisations.

The co-production methodology secured buy-in and generated a sense of ownership amongst key stakeholders:

‘It was just brilliant how the innovation process starts from an idea and come up with a solution and a product at the end of it and how she (facilitator) got people engaged.’

Involving stakeholders from across the ‘whole-system’ was central to the success of the approach:

‘really useful ‘cos you kind of have tunnel vision, don’t you, of what I need to do for my diabetic patients, but…there were opticians there…health trainers…and it’s all these different people who are all involved in diabetic care.’

The interventions were designed utilising a behaviour change model created by Stanford University: trigger, ability and motivation. This ensured the interventions provided a trigger to make change, focused on things that could be changed and thirdly involved maintaining motivation to change.

Through the process evaluation and the implementation phase it became apparent that staff needed training to make best use of the self care ‘Living Well with Diabetes’ folder with their patients.

‘…the folder is just a folder…But it’s what you do with it that makes the difference. So what I’ve learnt is that the staff need some coaching. A bit like the leaflet was meant to be a focus for conversation. Well so too is the folder.’

3.2.2 Some of the challenges of implementing the activities in Keighley:

• Targeting a specific age group and ethnicity because it is more time consuming to administer
• Engaging some staff who are busy with usual care, when patients do not bring the folder to sessions
• Competing with many priorities in primary care. There are so many processes of care to consider the folder is not always remembered.
• Working with pharmacies was difficult as some pharmacists had little time to engage health promotion activities.

3.2.3 Key themes emerging from the process evaluation

• Having a supportive advisory group was important for success and providing influencing ‘opening doors’; such as delivering advice and asking questions.
• Having the right team members in post who have good local links, track record of established networks and relationships of trust.
• Significant lead-in time is required to access relevant data and develop a Project Implementation Document with clearly defined aims, objectives, roles, responsibilities and deliverables.
• The flexibility of RNIB in allowing the projects to take shape as a result of the insight process was praised and appreciated, as was the structured and systematic approach to the development and implementation of the projects. This developed a programme of work with a clear vision.
• It is essential to recognise the environment in which the intervention is being implemented.

Anecdotal evidence and positive perception of GP Practice staff about the value of the self care folders ‘Living Well with Diabetes’ was very powerful. It led to three Clinical Commissioning Groups funding RNIB to work with 30 GP Practices to extend the use of the self-care folders with up to 12,000 patients. We have been able to implement learning from the pilot project to improve the efficacy of the intervention. Training staff in motivational interviewing has been key; ongoing support and coaching for staff and practice staff distributing the folders to patients as part of ongoing care to ensure the folder is integrated into existing diabetes management. The evaluation results from this larger implementation of the ‘Living Well with Diabetes’ folders will be available in summer 2015.

Conclusions

The co-production approach to developing the project ensured there was local ownership and commitment beyond the lifetime of the original project. The interventions were designed starting with people’s experience of living with diabetes which is a complex condition to manage. A patient-centred whole systems approach was adopted and has been central to success.

The project found that a telephone reminder call is a feasible intervention to improve attendance for some groups at secondary care outpatient clinics. It should be integrated into existing systems and the effect on patients of different ethnicities monitored.

The interventions: text appointment reminder; the Living Well with Diabetes folders and community education and awareness raising programme appear to be beneficial in raising knowledge and awareness of diabetes management and to have contributed to increased attendance at DRS. The self care folder intervention was popular with patients, GP Practices and Commissioners. The local Clinical Commissioning Groups have rolled out the folder to over 30 Practices covering 12,000 patients in Bradford and Airedale.