Shared decision-making in patient-centered care
Despite advances in therapies and healthcare, diabetes has reached epidemic proportions, with the global population of people with diabetes set to rise to 9.0 billion by 2040 , representing a significant public health burden. Prevalence of diabetes in Germany is 6.5 million, in the Netherlands it is 1.0 million, and in the UK 2.9 million.
Diabetes costs US$ 13 billion a year in the UK, $ 35 billion a year in Germany and $ 320 billion a year in the USA; these figures are expected to have almost doubled by 2035, with similar statistics reflected across other countries .
Notably, inpatient costs are considerably higher than outpatient costs in all countries due to the inherent medical care requirements of diabetes-related complications.
The psychosocial sequelae of diabetes have been recognized in a number of international guidelines that have set out the standards of care that people with diabetes should expect [2, 3]; however, despite a strong patient voice demanding psychosocial support, there is still a gap in the provision of psychological care with evidence of poor service despite a clear clinical need.
In my view, there remains a widespread lack of understanding of the impact of the psychosocial burden of diabetes, and more specifically how to address it. Consistently poor outcomes highlight the urgent need for a paradigm shift to a more holistic, truly person-centered approach .
People with diabetes often lack awareness of their rights and responsibility to influence service provision and effect healthcare change in their own locality . At the same time, research from the global Diabetes Attitudes Wishes and Needs 2 (DAWN2™) study shows there has been a failure by healthcare commissioners to create the necessary organizational and structural changes to provide optimal care .
Diabetes consultations remain, for the most part, firmly rooted in the medical model, while medical advice continues to be provided by “expert” healthcare professionals (HCPs) in didactic consultations rather than through collaboration with the people affected by diabetes. Consequently, evaluation of individuals’ personal needs and barriers can be overlooked .
A paradigm shift away from a purely medical model to one with greater emphasis on the psychosocial aspects of diabetes has long been advocated; however, what this looks like in practice has remained opaque until now.
The responsibility of self-management lies firmly with the person with diabetes, albeit with the support of HCPs. However, HCPs are often ill-equipped to offer support for factors that are not specific to glycemic control, but which still do affect diabetes management. Social support, for example, motivation or health beliefs all impact an individual’s ability to self-manage. Each of these can be addressed. Signposting to online support or local groups can be effective; questioning health beliefs and exploring barriers to motivation can all help.
HCPs are responsible for delivery of best-practice healthcare, not for the actions of their patients. Providing an improved interaction between HCPs and their patients by exploring informed, co-decision making opportunities and exploring all possible care pathways would enable:
- an enhanced patient and HCP experience;
- greater patient empowerment;
- improved decision-making;
- personalization of healthcare via appropriate education, therapies, devices and support tailored to the individual; and
- improved biomedical, psychosocial, and quality of life outcomes.
Communication in routine consultations
Routine consultations currently leave people with diabetes and HCPs feeling frustrated, both in primary and specialist care settings. The lack of understanding of the psychosocial burden of diabetes and the evolving consequences results in a negative impact on clinical practice with consequential negative outcomes for patients.
At present, consultations are designed to focus on the biomedical outcomes of diabetes by using a didactic medical model. Complex and detailed algorithms are supplied by various guidelines for the management of blood glucose, lipids, blood pressure, and long-term complications, but these relate only to medical management. Even mutually agreed goals are often not followed up, leaving people with diabetes frustrated and HCPs struggling to provide tailored support.
Typically, physicians interrupt their patients 18 seconds after they start describing their problems; approximately half of patients’ concerns are not discussed, and in 50% of consultations, patients and physicians disagree on the central problem presented . Disagreement about treatment goals, inconsistency among healthcare teams and confusion about treatment priorities are all associated with poorer outcomes.
Decision support tools
Novel decision support tools are designed to aid medical decisions and improve understanding on the part of the person with diabetes and the healthcare team about the wider, holistic challenges faced that impact the achievement of optimal glycemic control. Decision support tools vary in their level of medicalization, with some focusing on medical decision-making such as insulin titration, whilst others focus on lifestyle behaviors and others present a “whole-person” approach.
KALMOD, based on the Kaleidoscope Model of Care, is one example of a whole-person tool. Supporting holistic, person-centered healthcare for adults with diabetes, KALMOD takes a biopsychosocial approach, with the aim of fostering greater collaboration between the person with diabetes and their HCP. It achieves this by identifying holistic barriers to self-management and matching those to appropriate care pathways. Early results show that the tool is highly relevant, personalized, and simple to use . Furthermore, people with diabetes reported that they believed the tool would improve their consultation with their healthcare team and would help the healthcare team better understand their individual needs.
Irrespective of which decision support tool is most suited to specific consultations and individual needs, it is increasingly apparent that a move away from the accepted medical model of healthcare to support people with chronic conditions is crucial.
As wider industry moves into the healthcare solutions space, via companies such as Google, Samsung, Sony, and Amazon, there is a shifting emphasis toward broader health solutions. Whether these players remain, whether their solutions result in improved biomedical and psychosocial outcomes for people with diabetes, and whether those improvements can be sustained in the long term remains to be seen.
What is clear, however, is that the face of healthcare is changing and decision support tools are increasingly seen as having potential to influence behavior of people with diabetes and HCPs.
For more information on KALMOD contact Professor Barnard: Diabetes.MedicineMatters@springer.com.
- IDF 2015 Diabetes Atlas. Available at www.idf.org/e-library/epidemiology-research/diabetes-atlas/13-diabetes-atlas-seventh-edition.html. [Last accessed 12 June 2018].
- American Diabetes Association. Lifestyle Management: Standards of Medical Care in Diabetes–2018. Diabetes Care 2018; 41(Suppl 1): S38–S50.
- International Diabetes Federation Guideline Development Group. Global Guideline for Type 2 Diabetes. Available at www.iapb.org/wp-content/uploads/Global-Guideline-for-Type-2-Diabetes-IDF-2012.pdf. [Last accessed 12 June 2018].
- Barnard KD, Lloyd C, Dyson P et al. Kaleidoscope model of diabetes care: Time for a rethink? Diabetic Med 2014; 31: 522–30.
- Peyrot M, Rubin RR, Lauritzen T et al. Psychosocial problems and barriers to improved diabetes management: Results of the Cross-National Diabetes Attitudes, Wishes and Needs (DAWN) Study. Diabetic Med 2005; 22: 1379–1385.
- Barnard KD, Cradock S, Parkin T, Skinner TC. Effectiveness of a computerised assessment tool to prompt individuals with diabetes to be more active in consultations. Pract Diabetes Int 2006; 23: 36–41.
- Barnard KD, Astle A, Hitchcock J et al. KALMOD: Novel holistic clinical tool to improve consultations and outcomes. Presented at: American Diabetes Association 77th Scientific Sessions. San Diego, California; June 9–13, 2017: 89-LB.