Psychosocial support for people with diabetes: past, present and future

The marked increase in prevalence of diabetes has not been matched by equivalent improvements in diabetes outcomes. Despite the acceptance that near-normal glycaemia is associated with optimal outcomes and the increasing number of medical treatments and therapy options, most people do not achieve target blood glucose levels. Although psychosocial support for people with diabetes has improved over the last 10 years, in many clinical settings the availability and delivery of this support falls short of what it should be and this shortcoming may mitigate against improvements in other health outcomes. Improved psychosocial outcomes will depend on an accurate assessment of the availability and performance of psychosocial support and, where needed, appropriate action to eliminate gaps, including training in psychosocial support for healthcare professions. Diabetes mellitus continues to represent a major public health burden both globally and in the UK. It is estimated that approximately 366 million people worldwide had diabetes in 2011 and by 2030 it is projected that more than 552 million people will be affected as a consequence of changing population demographics and changes in lifestyle [1]. In England, an estimated 3.1 million people had diabetes in 2011 and by 2030 this number is predicted to rise to 4.6 million [1]. This marked increase in prevalence, however, has not been matched by equivalent improvements in diabetes outcomes. Despite the acceptance that near-normal glycaemia is associated with optimal outcomes, most people are still not achieving target blood glucose levels. National Diabetes Audit data in 2009–2010 [2] reported that 66.5% of adults with Type 2 diabetes and only 28.2% of adults with Type 1 diabetes achieved HbA1c results of less than 58 mmol/mol (7.5%). Furthermore, 17.0% of adults with Type 1 diabetes and 6.7% of adults with Type 2 diabetes had markedly elevated glucose levels [HbA1c > 86 mmol/ mol (10%)]. These results have remained consistent over the past 3 years, indicating little improvement in diabetes control. Medical treatments and therapy options for people with diabetes have never been greater. Self-blood glucose monitoring, including new devices such as continuous glucose monitoring systems, improved means of insulin delivery, including a range of insulin pump choices, insulin analogues and a broader range of oral medications have all contributed to improved biomedical diabetes care for millions of people. Alongside these technological improvements, patient self-management education has improved with the development of behaviourally oriented, theory-based programmes. Given these advances, it is perhaps surprising that outcomes have not improved more, but this lack of improved treatment outcomes may reflect a lack of psychosocial care. When discussing the stigma associated with having diabetes, people with the condition often describe the burden as not only affecting health issues but also social functioning and quality of life. Diabetes burnout is reported to be common, with people feeling overwhelmed and defeated by diabetes and frustrated by self-care regimens. Many describe how diabetes is controlling their lives yet feel unable or unmotivated to change. This is compounded by a high prevalence of depressive and anxiety symptoms which occur 2–3 times more frequently in people with diabetes than the general population [3,4]. The psychosocial sequelae of diabetes have been recognized in a number of UK and international guidelines that have set out standards of psychological care, which individuals with diabetes should expect. Despite these guidelines, there remains a gulf in the provision of psychological services, with widespread evidence of poor service despite clinical need. In the UK, the National Service Framework (NSF) 2001 [5] aimed to ensure that people with diabetes are empowered to enhance their personal control over the day-to-day diabetes management in a way that enables them to experience the best possible quality of life. Similarly, the National Institute of Health and Clinical Excellence (NICE) states that ‘diabetes professionals should ensure they have appropriate skills in the detection and basic management of non-severe psychological disorders in people from different cultural backgrounds… while arranging prompt referral to specialists of those in whom psychological difficulties continue to interfere significantly with well-being or diabetes self-management’ [6]. NICE recommends all service developments should be needs-led, and the psychological needs of people with diabetes should be addressed in an organized and planned way. Other national and international guidelines provide similar recommendations; the International Diabetes Federation (IDF) states that healthcare professionals should, in communicating with a person with diabetes, adopt a whole-person approach and respect the person’s central role in their ongoing diabetes education and care [7]. Well-being and psychological status (including cognitive dysfunction) should be assessed periodically, with outcomes and clinical implications discussed with the person with diabetes. The American Diabetes Association (ADA) guidelines state that assessment of psychological and social situations should be included as an ongoing part of the medical management of diabetes. They specifically state that psychosocial screening should examine attitudes about the illness, expectations of medical management and outcomes, affect and mood, general and diabetes-related quality of life, resources (financial, social and emotional) and psychiatric history. Screening should be provided for psychosocial problems such as depression, diabetes-related distress, anxiety, eating disorders and cognitive impairment, particularly when self-management is poor [8]. Despite these consistent recommendations, Minding the Gap, a Diabetes UK report on the provision of psychological support and care for people with diabetes, concluded that access to psychological services is poor and estimated that 41% of people with diabetes suffer from poor psychological well-being [9]. Only 31% of diabetes centres had access to psychological services and as few as 2.6% complied with all psychologically relevant NSF standards and NICE guidance recommendations; 25.8% of centres failed to comply with any of the recommendations. Expert psychological support is unavailable in the majority of UK diabetes centres and significant geographical variations exist both in terms of service provision and skill sets within the diabetes team, with consequent inequity of service provision [10]. Most of the burden of diabetes care lies with the individual and their families. While many people with diabetes cope well with their illness, it is no wonder that the rates of psychological problems and poor quality of life are high in those with diabetes. These psychological issues are important because they negatively impact the person’s ability to care for their diabetes. The ability to take medication as prescribed may be reduced and in the long term these individuals have poorer outcomes [11]. In 2001, a global survey of Diabetes Attitudes Wishes and Needs (DAWN) provided useful insights into the psychosocial challenges facing people with diabetes globally and needs expressed by them. It ‘confirmed that diabetes causes multiple psychosocial problems, that these issues are barriers to achieving adequate glycaemic control… and health care systems are poorly equipped to support chronic illness care’ [12]. Following the study, a number of goals were established by the DAWN programme board (an international collaborative group established in 2001 by Novo Nordisk in partnership with the IDF and an international expert advisory panel) to promote active self-management, enhanced psychological care and better communication and coordination between people with diabetes and healthcare providers to reduce barriers to effective therapy. The lessons learned from the DAWN studies have contributed to position statements from the American Association of Diabetes Educators on psychological issues of diabetes management, the chronic care model, to the expanded role of pharmacists in Type 2 diabetes management [14], and the US national standards for Diabetes Self-Management Education [13–15]. This work has been carried out since DAWN and has coincided with an increasing international interest in non-communicable diseases, including the 2006 adoption of a resolution on diabetes by the United Nations [16] and a non-communicable diseases summit organized by the World Health Organization in 2011 to address chronic care [17]. The World Diabetes Foundation and the IDF are directing funds to translational research programmes studying healthcare delivery models. Despite the progress made over the last decade, there is still a long way to go. There remains a lack of recognition of the impact of the psychosocial burden of diabetes. Too few healthcare professionals truly understand what the ‘diabetes epidemic’ means in terms of psychosocial outcomes. There has been a failure by healthcare commissioners to create the necessary organizational and structural changes to provide optimal care. Patients do not understand their rights and responsibility to influence service provision and affect healthcare change in their own region. Furthermore, medical advice continues to be commonly provided by ‘expert’ doctors in didactic consultations to patients rather than through collaboration with patients and evaluation of patients’ personal needs and barriers [18,19]. So what will the future bring to improve psychosocial outcomes for people living with diabetes? A deeper understanding of psychosocial needs of people living with diabetes is still needed. Ten years after the original DAWN Study, a new multinational DAWN study is underway, again with the UK as one of the participating nations. The DAWN-2 study will include more countries and will draw on lessons learnt from the original DAWN Study. In addition to obtaining the views of people with diabetes and healthcare professionals, as in the original DAWN Study, the views of patients’ family members also will be obtained. This is an important addition, not least because previous research has indicated that family members play an important role in the psychosocial adjustment and self-management of adults with diabetes [20]. This multi-constituency will help identify differences between the laypersons and healthcare providers in their perceptions and attitudes [21,22], which can lead in turn to confusion, conflict and poor outcomes. This new global survey should address many unanswered questions in diabetes care and identify gaps in healthcare delivery and differences in perspectives across participant groups. DAWN-2 will establish a benchmark of service provision that will enable identification of countries providing best practice and comparisons to be drawn on future developments. Despite the improvements in psychosocial support for people with diabetes over the last 10 years, the reality is that the delivery and availability of this support falls a long way short of what should be expected in many clinical settings. With the broader focus of DAWN-2, an opportunity exists to inform current understanding and improve the way that psychosocial care is delivered. This will require a national discussion to face up to these challenges and answer difficult questions about the way high-quality patient-centred diabetes healthcare is achieved. Recommendations to facilitate such improved care include the conduct of audits of psychosocial provision and appropriate action taken to eliminate gaps; assessment of availability of psychosocial support services in catchment areas and the establishment of referral relationships with those providers; a standard level of training in psychosocial support for healthcare professions; and an updated national study of psychosocial support in diabetes centres. Only by visiting and re-visiting this issue will we succeed in reducing the psychosocial burden for those with diabetes and their families. None. RIGH and MP are members of the DAWN-2 International Publication Planning Committee (IPPC) and have received funding to attend DAWN-2 planning meetings. KDB leads the UK advisory group for DAWN-2 and has received funding to attend DAWN-2 planning meetings. KB leads the UK advisory group of DAWNZ and has received funding to attend DAWNZ planning meetings.