The psychological complexity of diabetes

As GPs, our training in diabetes is primarily focused on screening, diagnosis and achieving evidence-based targets to reduce morbidity and mortality of the disease. This is obviously important but what we lose in this approach is how our patient feels, how they understand the disease and where their mindset is in the approach to management.

Many years ago in GP training, we were set a challenge. In a survey, patients listed the top 10 most important things about their GP practice. What did we as GP trainees think they were? 

We worked together and produced ideas such as the GP having a specialist qualification, excellent quality physical examination, safe medication prescribing, proper prompt referral to secondary care as well as available appointments. But what had the patients listed as important? It came as a huge surprise to read that they valued baby changing facilities, good magazines in the waiting room, clean toilets, nearby parking as well as available appointments. Nowhere on the list was a specialist diploma!

What is the experience of people living with type 2 diabetes?

Diabetes Ireland is the national charity dedicated to providing support, education and motivation for people living with diabetes and their families. It recently commissioned research to look at the patient experience of living with type 2 diabetes.* Reading the results of the research carried out by an external researcher, I was reminded of that long ago list suggested by patients. 

For the Diabetes Ireland qualitative research, 18 people with diabetes and elevated glucose levels from all over the country were interviewed in depth. Not one of the patients worried about whether the doctor had a special qualification in diabetes – they worried more about how hard it is to change their lifestyle and live with diabetes and its demands. 

While we doctors think we are doing an excellent job by aggressively targeting HbA1c, lipids and blood pressure, patients may leave the appointment not understanding goals of treatment. Most patients understood diabetes to be a lifestyle condition and many think type 2 diabetes can be reversible. The underlying implication and narrative is that patients who fail in reversing the disease or not controlling it well enough to meet the glycaemic targets are ‘non-compliant’ or ‘irresponsible’. Thus, those whose diabetes management is not optimal experience living in a “negative psychological space.” As doctors, we know that diabetes is a complex metabolic disease which is difficult to reverse and yet this message clearly is not communicated to the patient.

The research highlighted that whether the patient was overweight or had a normal body mass index, all patients in the study perceived a diagnosis of diabetes to be a personal failure. Symptoms of diabetes, in general, were not well understood or recognised by patients. Most patients did not understand their treatment or felt that there was no plan for it. This research underlines the continuing challenge of communication between the healthcare team and the patient.

We forget about the feelings

How do patients feel when diagnosed with diabetes? Shock was the most common response to a diagnosis of diabetes. Patients also reported feelings including embarrassment, shame and disappointment. A positive finding from the study was that patients who were directed into a cycle of care felt that it helped them to quickly learn about their disease and access supports empowering them to make the behavioural changes needed. 

Most patients in the study were satisfied with their healthcare professionals and the frequency of engagement. Frustrations were primarily about lack of information and support about dietary advice, and how to embed sustainable change in lifestyle in the short-, medium- and long-term.

All patients understood the need to improve dietary habits and exercise. The research showed that all patients fall into one of seven different mindsets. At the heart of these mindsets were two key variables: the extent to which people had effective personal systems to make sustainable behavioural change and the extent to which people delayed gratification consuming food and drink for future health benefits. 

Mindsets are dynamic and people move between them depending on external life pressures. There are patients who simply ignore the diagnosis and need for change, there are the ‘starters’; both serial restarters (‘every Monday I start again’), those trying to get back on track, and those who start strong, but it is early days and the motivation deteriorates with time. 

There are the ‘stuck’ patients, who adopt a strict but unsustainable approach and then those who are ‘vigilant’. Patients move between these groups and change their mindsets with time. There is little to no training in the psychology of patient behaviour in the study of medicine. As doctors, we may give the same advice to every patient about medical management in diabetes, but patients fall into seven major groups as to how they deal with the change. Different approaches are needed depending on where the patient is in their individual approach.

The burden of living with diabetes through the lifespan

Living with diabetes was described as ‘a burden’. Patients felt they had lost spontaneity around food and had to forward- plan all meals, which was challenging. They found this difficult and that it affected their lives in a significant way. Although they understood that diet and exercise are important in the management of diabetes, most of them reported having no strong guidance on managing exercise, medication, and diet in their disease. 

Patients were aware of education courses in the community and through Diabetes Ireland, eg. the CODE programme. However, they felt there was no sustainable support to help embed new behaviours long-term in their lives. They describe frustration when they reverted to old eating habits; they describe a sense of deprivation and preoccupation with diet. 

There is a difficulty in supporting motivation in the short-and long-term. An interesting point for doctors is to acknowledge that patients with diabetes find it hard to accept medication as part of their treatment as they see diabetes as primarily a lifestyle disease. This tallies strongly with my own experience of patients often requesting more time to improve their diet instead of accepting an increase in medication dose. 

A deeper dive into the interviews with the patients revealed that the patients wanted more time with their GP to discuss lifestyle changes. Some would prefer to have review appointments with the doctor as opposed to the nurse.

What can we learn from the study?

It is good to hear that overall, patients are satisfied with the number of visits to the doctor for their diabetes, but there are also some new aspects for us to consider. We need to learn to clearly communicate the message that type 2 diabetes is a complex disease and not solely managed through diet and exercise. Although they might like to spend time discussing motivation and dietary approaches, it is important to clarify that GPs are not trained in dietary support and that information is best sourced through structured education or an appointment with a dietitian, who should be accessible to patients in the community. 

We need to be clearer on the goals in the short-, medium- and long-term with diabetes. This highlights the need for psychological support for patients with this chronic disease; in particular, because people with diabetes are at much higher risk of depression and other psychological comorbidities. For the HSE National Working Group in Diabetes and for Diabetes Ireland, there is a need to provide ongoing support to patients months and years into their journey with type 2 diabetes. 

In summary, diabetes is a metabolic disease that over time increases morbidity and mortality. The treatment of diabetes is a combination of medication, dietary and lifestyle change and will need input from many different healthcare practitioners for optimum management. It is not realistic to expect GPs to provide all the support the patient needs, but as GPs we can recognise patients’ needs and signpost appropriate services in a better way. 

*The final report on this Diabetes Ireland qualitative research project ‘Reframing how we talk about type 2 diabetes’, by Lorraine O’Rahilly, was produced in September 2021