Diabetes distress and health literacy in diabetic foot disease

Background

Anyone working in diabetic foot care knows that good prevention requires more than attention to the foot alone. Of course, circulation, neuropathy, foot deformities, and wound history are important. But in daily practice, something else also becomes visible: one patient quickly takes on advice and self-care, while another struggles to understand information, apply it, or keep it up. Stress and emotional strain related to living with diabetes can also play a major role.

Yet these psychosocial factors still do not always have a clear place in foot care. That is striking, because they can clearly affect self-care, communication, and ultimately the risk of foot ulcers and amputations. This project therefore focuses on two factors that may matter greatly in practice, but have received little attention in diabetic foot care so far: diabetes distress and health literacy. By gaining a better understanding of how these factors are related to diabetic foot problems, the project aims to contribute to care that is not only medically sound, but also better aligned with what a person understands, can manage, and needs.

Approach

The DC2 project investigates how diabetes distress, health literacy, and diabetic foot disease are connected. It first maps what is already known about the psychosocial aspects of diabetic foot disease. It then looks at the levels of diabetes distress and health literacy among people with or at increased risk of foot problems, and examines how these factors are related to outcomes in diabetic foot care.

But the project looks deliberately beyond numbers alone. It also includes the experiences of people with diabetes and of healthcare professionals themselves. What psychosocial needs come up in daily practice? What challenges do people face? And what do healthcare professionals need in order to respond better? It is precisely this combination of quantitative and qualitative insights that should help create a fuller picture of what really matters in everyday care.

The research uses clinical data from Steno Diabetes Center Copenhagen, new self-reported data, and data from around 2,000 participants in The Maastricht Study, a large Dutch cohort study. In addition, qualitative data will be collected in several European countries to further deepen the findings. This mixed-methods approach makes it possible not only to identify patterns, but also to better understand what lies behind them in practice.

From insight to care that fits better

The real strength of this project lies in its translation to practice. Greater insight into diabetes distress and health literacy can help healthcare professionals recognise earlier why prevention may work differently for one patient than for another. It can make clearer why advice does not always land, why self-care may be difficult to sustain, or why communication during a consultation does not automatically connect.

If psychosocial signals become visible earlier, explanations, guidance, and support can be better tailored to the person in front of you. That creates more room for care that is not only well intended, but also truly workable in the daily lives of people with diabetes.

The knowledge gained from this project may ultimately lead to practical tools or recommendations, for example around communication, psychosocial signalling, or support for self-care. In that way, it can contribute to more person-centred diabetic foot care and to better prevention of foot ulcers and amputations.

Research team

The project is being carried out at Steno Diabetes Center Copenhagen, the largest diabetes centre in Scandinavia, where more than 11,000 people with diabetes are treated every year. The doctoral candidate is part of the research group Psychosocial health in Life with Chronic illness within the Department of Prevention, Health Promotion and Community Care, and works together with a multidisciplinary team of clinicians and researchers.

There is also collaboration with another doctoral candidate within DIALECT, who focuses on risk stratification in people at high risk of diabetic foot problems. In addition, the project involves collaborations with Amsterdam UMC and Maastricht University, bringing together clinical, psychosocial, and methodological expertise.

Steno Diabetes Center Copenhagen

Steno Diabetes Center Copenhagen is part of the public healthcare system in the Capital Region of Copenhagen and combines patient care, research, education, and health promotion. The centre has more than 400 employees, including physicians, nurses, dietitians, patient coordinators, podiatrists, and laboratory technicians. More than half of them are involved in research, either full-time or part-time.

The ambition of SDCC is to improve diabetes care in the Copenhagen region and at the same time contribute new knowledge and inspiration nationally and internationally. In 2021, the centre was recognised by the World Economic Forum’s Global Coalition for Value in Healthcare as one of the best hospitals in the world in the field of value-based healthcare for people with diabetes and other chronic conditions.