Material throughout this report has been reproduced from Papoutsi et al.1 This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See https://creativecommons.org/licenses/by/4.0/. The text throughout includes minor additions and formatting changes to the original text.
Background and context
Diabetes represents one of the most significant global public health challenges of our time.2 The global prevalence of diabetes has nearly doubled since 1980, with an estimated 8.5% of the global adult population living with the condition in 2014.3 In the UK, recent figures place the number of adults living with diabetes at 3.9 million, of whom approximately 90% have type 2 diabetes (T2D) and 8% have type 1 diabetes (T1D).4 It has been found5 that the prevalence of T1D and T2D has increased significantly in children and adolescents, and that these increases (particularly relating to early presentation in T2D) disproportionately affect people in ethnic minority groups. In the UK, the rising prevalence of diabetes has raised the cost of diabetes care to 10% of the annual NHS budget and has highlighted an urgent need to investigate different ways of delivering diabetes prevention and care.6,7
In England and Wales, more than 30,000 children and young people with diabetes receive care in paediatric diabetes units.8 Young people with diabetes constitute an important group, as the early adoption of good self-management practices at a young age can significantly reduce the risk of lifetime complications, prevent early mortality and lower costs for the health service.9,10 An estimated 642 million people will be living with diabetes worldwide in 2040.2 Yet, in 2018/19 only 36% of children and young people with T1D in England and Wales achieved recommended blood glucose control [haemoglobin A1c (HbA1c) levels of < 58 mmol/mol as per the National Diabetes Audit target],11 and a similarly low proportion received all recommended care processes, with high variability between care providers.8 These audit data are reinforced by research12 showing that mortality among young adults with diabetes in the UK is worse than in other European countries and that it rose significantly between 1990 and 2010. Diabetes is also known to have serious consequences in those diagnosed in childhood: diabetes-related complications (such as kidney and eye disease) were seen in one in three of those with T1D, and in three in four with T2D in their early 20s, within 8 years of diagnosis.13,14 People diagnosed with T1D before the age of 10 years (compared with those of older ages) have been shown in one study to have a 30-fold greater risk of future cardiovascular disease.15 In recent years, there has been a considerable increase in young women entering pregnancy with pre-existing diabetes,16 and this is associated with adverse pregnancy outcomes (to mother and child) that are exacerbated by suboptimal glycaemic control and the absence of pregnancy planning.
Barriers to accessing health care for younger people include a lack of equitable access to services, a lack of developmentally appropriate consultations, a fear of being judged and stigmatised, and diabetes-related distress.17 Young adults report the worst NHS experience of any age group, and their health-care needs and priorities are distinct from those of other age groups.18,19 This may be even more important for young people from socioeconomically deprived areas, who achieve worse blood glucose control and present with more complications and unplanned pregnancies than those from more affluent areas,20 and for those in ethnic minority groups who are disproportionately affected by T2D.21
Why is research on group clinics needed?
Current practice of diabetes care and who/what it fails to reach
The research described in this report is important for people who have diabetes and for the NHS for a number of reasons. First, after the transfer (or ‘transition’) of care from paediatric to adult care, young adults (usually defined as people aged 16–25 years) frequently exhibit a deterioration in glycaemic control. Loss to follow-up is common22,23 and attendance rates are low.24 Many young adults with diabetes report poor experiences of, and dissatisfaction with, the care that they receive and challenges navigating health-care systems.25 High diabetes distress and poor self-care have also been widely recognised in young people with diabetes.26 A well-conducted multicentre trial27 found that enhanced transition care, including close support from a transition co-ordinator, had only short-term benefits for young people with T1D, and there is little trial evidence for T2D care during transition and young adulthood. These issues have been recognised internationally in a consensus statement by the American Diabetes Association28 and by the NHS, which has designed service specifications to support transition and young adult care for people with diabetes.29 As described above, diabetes outcomes are disproportionately poorer among children and young adults from ethnic minority backgrounds and living in deprivation than among those who are not.21 These findings highlight a need to look beyond traditional models of diabetes care, currently based on one-to-one clinic appointments with health professionals, to try to improve engagement with care, quality and experiences of care, and diabetes-related outcomes.
The focus on young adults living with diabetes reflects a key point in an individual’s life course at which effective intervention has the potential to lead to major improvements in long-term health outcomes and could potentially have an impact on lifelong health behaviours and engagement with care.
Improving care design and delivery through participatory involvement
Recent quality improvement work within the NHS30 has built on accumulating patient experiences that suggest that current care models do not adequately support individuals to take control of their health or work with their care providers to achieve their desired outcomes and experiences. The concept of person-centred care is central to these quality improvement programmes and has been widely adopted by organisations designing, delivering and evaluating complex care models, such as the NHS, The Health Foundation and The King’s Fund.30 A number of different approaches to developing person-centred care have been proposed, including collaborative care models and experience-based co-design (EBCD).31 Person-centred approaches have been shown to engage diverse and underserved communities32 and young people,33 particularly in mental health-care settings.
Collaboration and co-design in health care are increasingly built into health services research and intervention development, with a relevant example in T1D structured education.34
EBCD offers an approach to examine, test, review and refine the new care model it designs in an iterative evaluation process, valuably applied to health-care implementation research.
Could group clinics enhance the care of people with diabetes?
Group clinic-based care (also known as ‘shared medical appointments’) for people with diabetes has been used and evaluated before in specific contexts.35 Group-based education, in models such as Dose Adjustment For Normal Eating (DAFNE), is already used widely in diabetes treatment, but is typically a single, time-limited intervention based on education to support a limited range of diabetes self-management practices. There is little evidence to support group-based models that incorporate a broader scope of care in health services. A study36 of Italian adults with diabetes who underwent group-based care, which focused on lifestyle interventions, found that those who underwent group-based care maintained better glycaemic control and required less clinician time than those receiving standard one-to-one care. This trial identified that group care requires the ‘reallocation of tasks, roles, and resources and a change in providers’ attitudes from the traditional prescriptive approach to a more empathic role of facilitator’,36 highlighting the need for innovation away from standard models of care in the delivery of such an intervention. Other evidence37 suggests that shared medical appointments can yield measurable improvements in patient trust, patient perception of quality of care and quality of life. Some studies suggest38 that shared medical appointments offer a route to better support and engagement in health care for underserved racial and ethnic minorities. With specific relevance to young adults, recent advances39 in neuroscience and psychology highlight that peer influences are likely to be particularly important for controlling risk behaviour and that this may have a significant impact in adolescence and young adulthood. The development of group clinics has exploited the potential for peer support to improve health-related behaviour, for example in the successful introduction of a group clinic for young adults following renal transplant, which led to a significant reduction in the incidence of graft loss.40
To our knowledge, no studies have incorporated or evaluated group clinics designed with extensive participation of service users, have been designed to meet a wide range of health and social care needs or have been evaluated extensively in young adults with diabetes. Furthermore, recent systematic reviews have found that group clinics often had a positive effect on clinician- and patient-reported outcomes but have not undertaken detailed work on their mechanisms of action and context in which they work,41 and this is vitally important if group clinics are to be implemented within a health system, such as the NHS.
The National Institute for Health and Care Research (NIHR) identified a need to generate an evidence base for the use of group clinics in chronic conditions, and supported a commissioned systematic review in 2015,41 followed by a commissioned funding call for primary studies, of which this is one. The systematic review identified previously published mixed-methods research, including 22 randomised controlled trials, of group-based clinics, the majority of which had been aimed at delivering care to people with diabetes. Their review concluded that, although group clinics seemed to have consistent and promising evidence of benefit on some biomedical outcomes, there remained significant uncertainty as to their potential benefit within the NHS and whether or not they would meet the needs of people from ethnic minority groups. The review41 also identified the need for greater understanding of the context in which group clinics might offer an appropriate alternative to individual consultations, and the conditions in which they would be less appropriate.
Research objectives
Aims
To explore the scope, feasibility, impact and potential scalability of group clinics for young adults with diabetes.
To contribute to NHS service redesign and improve care for people from underserved groups with long-term conditions.
Research questions
How and to what extent might an innovative, co-designed, group clinic-based care model meet the complex health and social needs of young people with diabetes?
Could a group approach help support diabetes self-management? If so, what can the experiences of participants, the functioning of the group and the wider context in which the new model takes place tell us about its mechanisms of action?
What is the feasibility, acceptability, cost and impact on outcomes of introducing group clinics for their users and stakeholders? What is the organisational impact of this model to the NHS and other stakeholders?
What would be the optimal size and study design of a cluster-randomised controlled study to evaluate the clinical benefit and cost-effectiveness of offering group clinics to young adults with diabetes? What other factors should be considered when planning such a randomised controlled trial (e.g. factors relating to patient characteristics, existing models of service delivery, acceptability and mechanisms of action of group clinics on clinical outcomes)?
