DIMPLE – Diabetes Improvement through Mentoring and Peer-led Education Project

Abstract

The nature and extent of the Type 2 Diabetes problem has become increasingly worrying for those involved in healthcare. There is an ever-rising incidence of people diagnosed with the condition in the UK andthe unhealthy lifestyle factors that underlie the condition seem to characterize modern day living.Finding innovativeways to address this growinghealth problemhas never been of more interest and exigency to public health. Proper self-care and self-management isnecessary forthe successful prevention and management of the condition.This report exploresa peer-ledapproach to improving and spreading self-care and self-management in diabetes, andfollowsthe journey of three peer-led education projectscollectively called DIMPLE. DIMPLE was co-created by local residents living with diabetes and the projects have been delivered over the last 18 months in Hammersmith and Fulham and in Harrow and are already expanding into Kensington and Chelsea and Westminster. This research suggests that there aresignificant benefits to be found in using peer-led approaches to tackle the Type 2 diabetes problem andoffers insightsas to how NHS organizations can better reach those at risk and bring about appropriate behaviour change.

Introduction

Background Knowledge

Diabetes is one of the biggest health challenges facing theUKwith a huge increase in the number of people diagnosed with the condition.Since 1996 the numbers of people diagnosed have increased from 1.4 million to 2.9 million[1]and by 2025 it is estimated that five million people will have diabetes; roughly 90% of these cases being Type 2 diabetes.Prevalence of Type 2 diabetes is highest amongst South Asian, Arab, Chinese, African and African Caribbean communities. Obesity is the most potent risk factor and deprivation is also intimately linked with diabetes for it is associated with higher levels of risk factors such as: obesity, physical inactivity, unhealthy diet, smoking, poor blood pressure control and other life stressors. Diabetes can lead to complications such as heart disease, stroke, blindness and kidney failure if left untreated. These can be debilitating for the patient and costly for the provider.Diabetes alsorequires effective self-management for positive health outcomes to be achieved and can place myriad demands on the patient and their families.

A report on diabetes in the UK, by Diabetes UK, recommends that in order to ‘curb this growing health crisis and see a reduction in the number of people dying from diabetes and its complications, we need to increase awareness of the risks, bring about wholesale changes in lifestyle, improve self-management among people with diabetes and improve access to integrated diabetes care services[2]’

In the NHS Diabetes National Service Framework, both the prevention of diabetes in people at risk of diabetes and the identification of people with diabetes comprise two of the twelve standards[3].The findings of the UK Prospective Diabetes Study found that a change in negative lifestyle patterns, such as consuming a low-fat, high fibre diet and exercising could reduce the risk of one developing type 2 diabetes[4]. The longevity of lifestyle changes in preventing onset of diabetes has also been shown in the China Da Qing Diabetes Prevention Study. Both increased exercise and/or improved diet led to a lower incidence of diabetes occurrence in the intervention groups (7%) than the control group (11%), further reiterating the importance of lifestyle intervention in the primary prevention of type 2 diabetes[5] In the Finnish Diabetes Prevention Study, an intensive lifestyle modification programme yielded long-term changes in participants’ physical activity levels and diets, as well as biochemical and clinical measurements[6]. This reinforced the message of previous studies that highlighted that non-pharmacological methods consisting of lifestyle modification are efficacious and also far more cost-effective in reducing diabetes risk.

Of most relevance to this paper is the role of patients in delivering quality improvement in diabetes care and self-management. Such quality improvements include the provision of education to patients, with the most successful programmes being Dose Adjustment for Normal Eating (DAFNE, for type 1 diabetes) and X-PERT (for type 2 diabetes). The promotion of self-management is another example of patient targeted quality improvement. With diabetes being a lifelong condition, patients require the ability to reduce their risk of complications as much as possible. Both education and self-management are vital in order to achieve this.

Local Problem

There are over 20.000 people diagnosed as living with diabetes within the tri-borough area of Hammersmith & Fulham, Kensington & Chelsea and Westminster. There are approximately 6,000 on the GP register at high risk of developing diabetes and approximately another 8-10,000 living with the condition undiagnosed and who are thus at risk of poor health and diabetes complications. There are also large BME populations who experience higher incidence and are at higher risk of developing Type 2 diabetes [7] than the general population.

2009 QOF-recorded prevalence of diabetes in H&F was 3.2% of the GP registered population, or 6000 people. The PBS modelled prevalence was 4.1%, indicating 1,500 people undiagnosed with diabetes. 2009 QOF recorded prevalence in Harrow was 5.46% that is 11,800 people. However, the YPHO modelled prevalence was 6.30% (13,606) – a gap of 1806 undiagnosed with diabetes, similar to H&F. The difference in prevalence is due to different population groups.

Intended improvement

The National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for North-West London (NWL) worked in partnership with, Hammersmith and Fulham PCT and Harrow PCT, CITASand Diabetes UKin order to deliver a range of diabetes management and peer-led education programmes under the acronym of DIMPLE. The project consisted of three volunteer programmes entitled Peer Educators, Diabetes Mentors and Diabetes Champions.

DIMPLE was a challenge of both engagement and behaviour change. The principal aim of DIMPLE was to improve and spread self-care management for people with,or at risk of Type 2 Diabetes. As well as supporting diabetes patients it also had a strong preventive focus.This intended improvement was seento involve four main factors:community members’ ability to prevent/manage symptoms and risk factors, access to appropriate medical services, patient ability to self-manage the condition and compliance with self-management techniques.In those reached by DIMPLE we intended for improvements to be seen in a range of patient outcomes such as: health-related quality of life, physical condition and psychological condition.

DIMPLE came about from the ideas of Diabetes Service User Groups and LINk’s members in Hammersmith and Fulham and Harrow. They wanted to address the shortage of available services providing support and education in self-management of Type 2 diabetesas well as a lack of awareness in local communities around prevention and earlier detection.They wanted to create a solution that was community driven, and in line with DoH guidance suggesting peer-to-peer support as one of the most effective ways of encouraging behaviour change.There was also evidence that peer support interventions might provide a flexible and low-cost way to supplement existing support for those with diabetes.

Peer support has been defined as support from a person who has experiential knowledge of a specific behaviour or stressor and similar characteristics as the target population.[8]Within a peer support intervention people with a common illness experience share knowledge and experience that others, including many health workers, often cannot understand. Success of peer support in relation to behaviour change is hypothesised to be due in part to the non-hierarchical, reciprocal relationship that is created through the sharing ofsimilar life experiences.

The three DIMPLE interventions, diabetes champions, peer educators and mentors, were all iterations of this idea. Relevant theoretical research on peer-led education, self-management and primary prevention can be found in the appendix of this report.

Study question

The research focus of the project concerned whether DIMPLE could provide a viable model for service providers approaching health improvement in Type 2 Diabetes. This centred onthe effectivenessof the peer-to-peer support interventions in achieving diabetes health improvement in both its preventive and supportive aspects, and looking at the cost/resource implications of the projects in the form of a social return on investment (SROI). We also investigatedthe role of patient and public involvement(PPI) in designing and delivering the projectand issues of sustainability in the current health-care climate.

Methods

Setting

Locally we felt there was a needand an advantage to focusing on BME communities and health inequality areas. Considered high-risk and hard-to-reach, nowhere were the challenges of Type 2 diabetes for both the patient and provider more strikingly represented. When previously working with BME groups in H&F we had seen how traditional top-down approaches to health improvement and health promotion could be ineffective and inefficient; they often failed to properly engage the hard-to-reach, and could encourage a view of patients as passive recipients of care. Given the self-care and self-management requirements for living successfully with diabetes it was seen as essential that DIMPLE support those living with the condition as active-decision makers in their own health.[9]We also wanted to invest in local people to deliver the DIMPLE projects and by doing so tap into the social capital inherent in our local communities. These considerations helped form the points of departure and innovation for DIMPLE,which we hopedwould achieve outcomes that were locally driven, responsiveandsustainable.

Planning the intervention

Diabetes Champions

The mainaim of the diabetes champion’sproject was to train local people as volunteersto raise awareness in their communities about diabetes.[10]The idea being that thevolunteers engage with other community members to share key health messagesto bring about increased knowledge and awareness and appropriate behaviour changes.The champion’s project was a path to prevention through health promotion.

The key messages we wanted champions to convey were: the risk factors associated with diabetes, the importance of healthy lifestyles, how to reduce or delay the possibility of developing diabetes, and how to be tested for diabetes. We wanted the volunteers to:

  • either have diabetes or be affected by diabetes e.g. a carer or family member of someone with diabetes.
  • have links with people and groups in the community,
  • be able to give a talk to local communities both in English and in their own community language - In recruiting multi-lingual champions we hoped we would be able to better target high risk communities - and
  • show strong personal qualities such as trustworthiness, reliability and a caring nature.

We wanted to train volunteers in outreach skills both to enable them to better engage people andalso for their own skills development. Champions would participate in a range oflocal community events and arrange events of their own,e.ggiving a talk at a coffee morning or a running an awareness session at a local faith group.

Of the three projects the champion’s project in particular was aimed at targeting BAME communities.We planned to recruit a majority of champions from BAME communities with the hypothesisthat increased awareness and behaviour change would result.The project was set-up at the beginning of 2011and was influenced by the community champion’s project in Hammersmith & Fulham which provided a blueprint for planning and delivery. Hammersmith & Fulham and Harrow worked in close partnership designing the project which was delivered across both boroughs.

Diabetes Peer Educators

The peer educators’ project developed from feedback from people living with diabeteswho wanted to be involved in educating and supporting other patients. We looked at how we could develop diabetes educators to work in collaboration with clinicians and services that were already delivering structured education coursessuch as X-Pert[11] and Introduction to Diabetes Self Management(IDSM), a taster for X-Pert.Due to the collaborative nature of the project we set up an operations group to agree clinical governance, IT governance and quality procedures, and to ultimately support ongoing discussions with clinicians and managers leading the clinical service about how best to deliver the courses. We hoped that peer educators would be able to motivate and improve self-efficacy in course attendees therebyimproving their ability to self-manage, with the additional benefit of potential for reducing clinician workload.

Diabetes Peer Mentors

The peer mentor project came about from evidence that diabetes patients wanted more support and needed more time than was available in primary care consultations. We developed an idea for a diabetes mentor scheme wherebyreferrals could be made to a mentor - someone already living with diabetes - who would offer emotional supportto help others cope better through active listening skills. This project was created from scratch and initially we needed to find a local education qualification in mentoring in that could be adapted for diabetes mentors and for their subsequent recruitment, training and accrediting. There were also considerations of how diabetes mentors would link in effectively and efficiently with other primary care services such as GP’s.

Ethical concerns

DIMPLE raisedethical concerns mainly regarding the volunteer workforce and the research methods used to evaluate the project. We needed to ensure thatvolunteers were fully CRB checked as they would be working closely with members of the public, that we provided standardised training with the scope and boundaries of the volunteer roles clearly delineated as distinct from those of professional health workers, and that they wereequipped for work in the community. This last requirement necessitated delivering outreach skills training,producing a handbook and providing ongoing supervision to assess performance and training needs. Patient confidentiality and information governance issueshad to be worked through particularly for the peer-educator and peer-mentor projects.With regard to the evaluation, as the DIMPLE programme was run as a service improvement initiative and not as a research project, Hammersmith and Fulham PCT determined that Ethics Approval would be waived. Issues pertaining to data protection, confidentiality and secure storage of information were given full consideration.

Planning the study of the intervention

We used process mapping to understand how the patient process of living with diabetes compared to the clinical care pathway. We used an Action Effect Diagram (AED) to develop and clarify a shared aim for the projects, along with specific primary and secondary outcome measures. This provided a visual map of the planned interventions, processes and their anticipated effect on outcomes.[12]In order to obtain relevant process measures and regularly review the progression of the project CLAHRC also developed a bespoke web based platform for quality improvement.

All three interventions were expected to bring about improvements by virtue of the peer-to-peer support relationship. There was evidence to suggest that peer support provided a dynamic conducive to behaviour change. We hypothesised that this might prove particularly true with respect to a condition like diabetes which requires education and support in order to master and sustain complex self-care behaviours[13]. The need for a broad approach to facilitating successful behaviour change has been increasingly recognised[14]and key ingredients for change have been identified; self-efficacy is the best predictor of engagement in health-protective behaviour and autonomy is also seen as critical; the more we seem to tell people what to do, the more we invite resistance[15]

We hypothesised that the champions would be able to better reach and engage those at-risk of diabetes. As local community members they would make the key health messages and information on diabetes socially and culturally relevant. We hypothesised that peer educators would enhance the successes of clinician led self-management courses.They would serve as positive role models, successfully employing the techniques and strategies taught on the course and thereby improve confidence and self-efficacy in participants. Similarly we hypothesised that peer mentors, through active listening and support, would improve confidence and self-efficacy in patients; again improving patient ability to self-manage.

As the most established intervention,evaluation has predominantly focused on the DIMPLE Champions project. Evaluationhas also been undertaken for the peer educators project and to a lesser extent the peer mentors project. The projects were all collaborative and community delivered so it was essential to develop a culture of ongoing evaluation through stakeholder engagement. We employed a dedicated volunteer coordinator to oversee the DIMPLE projects and we formed a cohesive operations group including service users, third sector organisations, Public health and CLAHRC which steered the projects.