Medical advances are important but we believe the key to living successfully with diabetes is something else entirely. Paying attention to the behavioural and psychological aspects of the condition is crucial to managing diabetes and preventing its complications.
Once diagnosed, type 1 and type 2 diabetes are lifelong conditions. Each imposes a complex self-care regimen that can be difficult to sustain. Optimal self-care includes healthy eating, regular physical activity, taking medications as recommended, checking blood glucose levels, and attending medical appointments.
New technologies such as insulin pumps, continuous glucose monitors, and smart-phone apps are enticing but they are not a panacea. Studies typically show that people who do well with these put more time and effort into their self-care, not less. And while technologies can make self-care easier for some, they can make it more challenging for others.
Despite or perhaps because of medical and technological advances, the fundamental issue in diabetes now concerns human behaviour – how to improve self-care and how to provide better support for people living with diabetes.
Enhancing self-care skills and confidence may be the answer. Structured diabetes education requires significant resourcing but it offers people with diabetes the opportunity to learn skills and gain confidence for a lifetime of managing their condition. Studies show that improved medical outcomes are generally not fully sustained in the long term (which may indicate that further support is needed) but that improvements in quality of life are fully maintained.
People with diabetes have a higher risk of developing emotional problems than the general population. Severe depressive symptoms affect around one in ten Australian adults with type 1 diabetes, and almost one in five with type 2 diabetes.
Diabetes-related distress is even more common. This is the stress and distress that results from living with diabetes, its management, and its consequences. Severe diabetes-related distress affects around one in four Australian adults with type 1 diabetes and one in five with type 2 diabetes.
Diabetes-related distress is associated with increased blood glucose levels and reducing it will likely improve biomedical outcomes.
The role of doctors
Research has shown that health-care professionals have difficulty recognising the emotional problems experienced by people with diabetes. A systematic, structured approach to monitoring well-being in health-care settings will help doctors, educators and other health-care professionals identify when it is impaired so that appropriate support and assistance can be offered.
Monitoring diabetes-related distress is relatively easy. Diabetes educators and practice nurses can be trained to identify and address most issues using simple questionnaires. And the Problem Areas In Diabetes (PAID) scale and the Diabetes Distress Scale (DDS) can be used routinely in clinical practice.
Total scores can then be calculated and used to track changes in emotional well-being over time. Alternatively, responses to individual items can be used to inform person-centred consultations. Only severe cases of diabetes-related distress would require referral to a mental health professional.
Health-care professionals are often concerned that discussing the emotional impact of diabetes may open the proverbial can of worms. But most people only want the opportunity to share their frustrations and have them validated. Indeed, these discussions are best viewed as an opportunity to gain the trust of the person with diabetes. They also offer important insights about how self-care is affected by unnecessary concerns, fears, and beliefs.
Another common concerns among health-care professionals is that discussing emotions will take too much time. But it is a myth that good communication takes more time. It’s when health-care professionals miss cues to discuss emotional concerns that consultations take longer.
Making a difference
While substantial resources are invested in programs to detect other diabetes complications (such as damage to the retina in the eye, or retinopathy), monitoring for emotional distress is not routine. Instead, we rely on the sporadic initiatives of enthusiastic health-care professionals.
If we are serious about improving the health of people living with diabetes then a more consistent effort is needed. Experience suggests that such efforts will only become commonplace once they are reimbursed by medical benefit schedules.
Improving self-management skills and reducing diabetes-related distress help people live with diabetes. Health-care professionals and organisations, and policymakers need to prioritise initiatives that address this. We believe such as focus can, and will, make a difference.