The Diabetes Essentials Care Survey
Research type
Research Study
Full title
Using Patient Perspectives to Optimise Standards of Diabetes Provision in Primary Care: the Diabetes Essentials Care Survey
IRAS ID
222127
Contact name
Gillian Hood
Contact email
Sponsor organisation
Queen Mary, University of London
Duration of Study in the UK
1 years, 7 months, 30 days
Research summary
Summary of Research
There are over 3.5 million people in the UK with diabetes and over half a million of those are living in London. National surveys, such as the National Diabetes Audit monitor diabetes care for this epidemic using nine diabetes care indicators. Other organisations such as Diabetes UK suggest there should be more care indicators for diabetes and advocate the use of 15 markers of good diabetes care. \nDespite the annual surveillance of care from such audits there are thousands of people who are not receiving good diabetes care and a number of theories have been suggested for this including both time and costs constraints plus the complexity of collecting data, but clearly multiple approaches to improve diabetes care should be considered. Recommended drivers from the Strategic Clinical Networks in London include: the need for greater leadership and local clinical champions; prioritisation of self-management and collaborative care planning, professional education and management guidelines. All of these suggestions and initiatives can make a difference collectively and this study asserts that involving patients in diabetes research can also drive continuous improvements in clinical care. This study proposes to use a diabetes essentials care survey based on one endorsed by Diabetes UK (and with their permission)so patients themselves can have a say in their diabetes care. We anticipate our survey which will be cascaded widely in NE and NW London, will indicate aspects of care which is improving plus other aspects which need to be further improved. We believe giving people a voice in their care can add value to service provision. Results of the survey could also inform local diabetes groups and CCGs, and may contribute to more patient centred commissioning for diabetes services. Application of the survey will also raise awareness amongst the diabetes population which can, in turn, improve diabetes knowledge.Summary of Results
FINAL REPORT Standards of Diabetes Service Provision in Primary Care:
The Diabetes Essentials Care Survey
IRAS: 222127
REC REF: 17/NW/0203
1) Introduction
There are over 4.8 million people in the UK with diabetes, with the majority of these cases now being managed in primary care. It is therefore important to utilise information to monitor diabetes care and promote improvements wherever possible.
Surveys and audits, such as the National Diabetes Audit (NDA), are important tools which can highlight deficiencies in both primary and secondary care. Findings from such surveys can be powerful drivers to improve service provision for people with diabetes. The current nine diabetes annual review indicators measured in the NDA and recommended by NICE guidelines include:
• Weight
• Blood Pressure
• Smoking status
• HbA1c, urinary albumin serum creatinine, cholesterol • Eye and feet tests Diabetes UK recommend that the following measures should also be included and undertook a survey on their members:
• Education
• Psychological support
• Pregnancy planning
• In-patient care
• Various indicators for paediatric care The Diabetes Research Lay Panel Group for Queen Mary University of London and Barts Health NHS Trust recommends a user perspective in all diabetes research and suggested a similar questionnaire in London and the Home Counties to compare results from the Diabetes UK Survey.
2) Study Aims and Objectives
• To identify areas of diabetes health care that are going well or are sub-optimal • To improve the knowledge of study participants • To give patients a voice • To report back to individual practices and clinical commissioning groups
3)
Methodology
With permission from Diabetes UK and Ethics, the Diabetes Research Team co-designed and validated the Diabetes Essentials Care Survey with the Diabetes Research Lay Panel. Individuals with diabetes were invited through clinics, databases, and GP practices in London and the Home Counties.
4)
Study Population
People with all types of diabetes from the age of 18 onwards were invited to participate, and there was no upper age limit. The survey was anonymous.
5)
The Survey
The Survey had 18 questions which included:
•
Type of diabetes
•
Gender
•
Age
•
Ethnicity
•
Status of the quality of diabetes care
•
HbA1c, blood pressure, cholesterol
•
Retinal Screening
•
Foot check
•
Kidney function
•
Weight
•
Smoking status
•
Diabetes Care Planning
•
Education
•
Referrals
•
Psychological support
•
In-patient diabetes care
•
An open box for respondents to record anything else about their diabetes care in the community Responses were categorised as Yes, No, Not Applicable or Not sure depending on the question. The questionnaire was distributed via our sites and diabetes research databases at Barts NHS Trust, North Central London Research Network (NoCloR), North West London Clinical Research Network and Basildon, and Mid and South Essex University Hospitals Group. The final target for the study was 20,000.
6)
Results
An initial analysis showed the following results:
6.1 – Quantitative Results
Of the total sample recruited, 42% were female and 58% were male. These results were similar to NDA audits with a slightly higher incidence in Type 2 diabetes males recorded.
Type of Diabetes
8.36%
Type 1 diabetes
13.96%
Type 2 on diabetes & insulin
11.85%
Type 2 on diet only
1.74%
Other types of diabetes
4.23%
Don’t know or incorrect response
In keeping with reports from the NDA, the vast majority of people who completed the survey were people with T2D aged 60 and over (71.5%).
Ethnicity
59.6%
White
25.7%
Asian
7.1%
Black
1.2%
Mixed Race
4.0%
Other
2.4%
Not known
6.2 – Qualitative Results
With regards to the overall quality of diabetes care received over the last year 23% said it had improved, 62.2% said it had stayed the same, 5.8% said their diabetes care had worsened and 6.2% did not know.
Primary Care Satisfaction
56.7%
Male
43.2%
Female
Ethnicity
69.6%
White
17.7%
Asian
7.1%
Black
0.7%
Mixed Race
3.4%
Other
1.5%
Not known
Satisfaction of care
3,741 people
Satisfied with the care from their GP Surgery, many reported an excellent service
375
Pleased with the care from their GP
273
Happy with their Practice Nurse
177*
Please refer to comments below
*This was a mix of those seen only in a hospital setting and those receiving medication attention in both primary and secondary care. There was general satisfaction with the Hospital Doctors, Diabetes Specialist Nurses, and Dieticians. In addition, there was positive feedback with the communication between the hospital and surgery. Other comments, of which there were 365, included delight at being given a FreeStyle Libre; receiving useful dietary advice; being able to contact their healthcare professional if the need arose; and the opportunity to attend an education course, many of whom found this valuable resulting in confidence in managing their diabetes.
19.7% were dissatisfied or frustrated with their primary care team, of which 54.6% were male and 45.3% were female. 61 participants reported that they were not contacted about their annual review appointments resulting in them having to approach the surgery. 104 were unhappy by the fact there was often a long wait for consultations with a Doctor or Nurse. 274 expressed concerns that there was a duplication of tests, at times being done by both the hospital and the GP Practice. 106 people considered they should be seen more than once a year, particularly, as in some cases, previously they had been given an annual review plus follow-up at three-to-six-month intervals. 46 reported that they were unable to see a Diabetes Specialist/Diabetes Trained Nurse in the Practice. 30 considered that the practice should be notifying them of test results, whereas they were expected to contact the surgery. They also felt that the health care professional should be explaining the purpose of the texts. 64 had been unable to access Podiatry or Chiropody Services. Other concerns included inaccessibility to test strips and continuous glucose monitoring; lack of continuity of care when seeing different health care professionals; no dedicated diabetes clinics; some people, although happy with the care from the Practice Nurse, expressed a wish to have a consultation with a General Practitioner on occasions; some responders had not been offered an education course and felt that this would have benefitted them; there were a few concerns about the diabetes knowledge of staff when admitted to hospital.
Ethnicity
69.6%
White
17.7%
Asian
7.1%
Black
0.7%
Mixed Race
3.4%
Other
1,5%
Not known
7.0) Safety
The survey was completely anonymous There were no risks in taking part and no safety events.
8.0) Compliance to the UK Policy Framework for Health and Social care research, GCP and the protocol The CI, research team, and sponsor were experienced and competent to conduct the research activities of the study. All staff were up to date with GCP, and research was conducted according to the approved research protocol, Ethics Committee and local regulatory approval and standards. The CI created an SOP to guide research staff working on the study in obtaining informed ICF and processing questionnaires. This was in accordance with the principles of GCP and the principles of the Declaration of Helsinki.
9) Conclusion
This study has confirmed that the majority of people surveyed are now familiar with specified diabetes health care provision in primary care. This is an encouraging finding with regards to patient self-care and management. A high majority of people with diabetes completing the survey were aware of what an HbA1c is, what their blood pressure and cholesterol targets should be, and the high percentages were similar to those shown in both the NDA and Diabetes UK audit. The survey did reveal some areas where diabetes care provision can improve or make even further advancements. Kidney function for example – what the measurement (creatinine and eGFR) actually is and how people can become involved in looking after their kidneys, was less obvious to most people with diabetes. This is an area for education in the same way as cholesterol and HbA1c have been explained in the past. This could mean that explaining renal function in diabetes and how to keep the kidneys healthy might become a feature of local education courses or that local practices may wish to display information about renal function on noticeboards whilst people wait for their appointments. It further seems that nearly half of the people surveyed have not been on an official diabetes education course. Again, this seems to concur with findings from the NDA.
Comments were scrutinised using a thematic analysis and a coding strategy approach. Initial qualitative analysis of the free text comments has shown that many people reported satisfaction with the service from their primary care team. There were also positive comments about hospital care from Consultants, Diabetes Specialist Nurses, and Dieticians. In contrast, there were elements of frustration such as waiting times for appointments, and receiving test results, lack of Podiatry and Chiropody services. Some people had benefitted from education courses and dietary advice while others have not had the opportunity to receive this. Some patients have been able to obtain Continuous Glucose Monitoring on the NHS while this is not available to others. Some practices offer diabetes consultations two to three times a year, while in some areas care is limited to the annual review only. This report has given a general overview of the personal views of the people who have very kindly taken the time to complete the questionnaire and return it to the Research Team. The initial results of this study were published in an abstract and a subsequent poster presentation for the Diabetes UK Professional Conference in 2020.
Unfortunately, COVID severely impacted on the completion of the study (reaching the 20,000 target) due to staff redeployment and study suspension. 19,439 questionnaires were completed. The initial data was analysed but publication was not completed due to the after-effects of COVID on workload and subsequent staff sickness. There is still a desired outcome to publish the findings from this research.
Chief Investigator – Dr Gillian Hood
Principal Investigator – Dr Gillian HoodREC name
North West - Preston Research Ethics Committee
REC reference
17/NW/0203
Date of REC Opinion
17 Mar 2017
REC opinion
Favourable Opinion