2024-04-05 12:50:36
The Diabète LAB is the human and social sciences laboratory of the French Federation of Diabetics. Created in 2015 based on the model of living labthe laboratory has carried out, thanks to its team of researchers, more than 50 studies on the experiences of people with diabetes.
All Diabète LAB studies aim to inform you and give you keys to understanding to better understand your disease, your treatments and the medical devices available. In addition, they allow us to nourish the Federation’s advocacy, guide our actions and better convey your voice to health stakeholders and political leaders.
For us, the objective of these studies is to always better meet your needs by listening to you. This is the reason why studies very often adopt a mixed methodology based on the quantitative (with questionnaires having to reach a significant number of participants) and the qualitative (thanks to individual interviews to collect your views). The main themes that have emerged during these 8 years of work are: the appropriation of medical devices, the impact of complications on quality of life and diabetes treatments.
Medical devices, for innovation that is truly beneficial to you
Our studies on medical devices focus, for example, on the use of insulin pumps or continuous glucose sensors, devices that often take an increasingly important place in your lives. Understanding the appropriation and the impact for you is therefore essential. Because if technological innovations can be attractive from a medical point of view, innovation must first and foremost be useful to you in your daily life in relation to the illness, to your treatments, but also to your quality of life, your mental health, etc.
Our studies show that medical devices can bring you numerous benefits, such as hybrid closed loops which allow a reduction in the mental load linked to disease management, and better quality of sleep, in particular for children suffering from type 1 diabetes and for their loved ones. Continuous glucose sensors have also provided very positive elements, allowing patients to feel more in control and secure in relation to the risks of hypoglycemia and hyperglycemia. Thanks to Diabète LAB studies, we have highlighted the contributions of these sensors and hybrid closed loops to better guide you in your choices, and we have also campaigned for their reimbursement by social security with public authorities.
Supporting the use of medical devices for a better quality of life
But all these devices are not free from defects, and can also become sources of difficulties in certain cases. They are not suitable for everyone, and do not completely remove the burden of managing the disease, since patients must dedicate time to make them work. Being able to view your blood sugar curves at any time can induce stress or even a form of obsession with always wanting to check that the figures are correct. This can reassure on the one hand but increase the mental load on the other.
Finally, we don’t all have the same relationship with technology and some of you may feel less comfortable using them. Significant social inequalities restrict access to these systems and people in precarious and isolated situations must benefit from appropriate support to access these innovations if they wish.
Complications of diabetes and treatments, studies to better inform you
Diabetes causes many complications, such as neuropathic pain, renal and cardiovascular complications, and even diabetic foot. Our studies show the significant consequences that these complications can have on your quality of life. Neuropathic pain, for example, is particularly difficult to live with due to the intensity and unpredictability of the pain, inducing a feeling of loss of control. Some complications are well known and taken seriously, such as heart complications. Others, however, are poorly known and underestimated by some patients: this is the case of the diabetic foot which nevertheless causes functional disabilities and pain with a strong impact on mental health.
The Federation, as part of its information mission, offers support to help you prevent these complications as best as possible and take care of yourself. It therefore seems essential to be well informed for preventive actions, but without causing stress or guilt because it is not always easy to follow medical recommendations.
The perception of treatments
Another major subject: your perception of treatments. So we have studied your experience with treatments, such as insulin therapy or vaccination, and our studies show that you seem generally satisfied. But this satisfaction must be explored in depth to fully understand all the issues, and to allow us to position ourselves in relation to care which is still poorly reimbursed. The relationship with insulin therapy, for example, is complex and different depending on the type of diabetes. Thus, people with type 1 diabetes are on insulin therapy from the moment they are diagnosed and often for many years. A very strong but also ambivalent relationship to this treatment can be established, since it allows them to live while being restrictive on a daily basis. People with type 2 diabetes have a different relationship to this treatment, which is unfortunately still brandished as a form of “punishment” by some doctors in the event of a negative progression of the disease. Insulin therapy is often poorly perceived and sometimes scary, but adopting it can bring many benefits.
As a patient association, the Federation seeks to understand your feelings, in order to be able to inform you and help you understand all these therapeutic advances with regard to their benefits for your quality of life.
Living with diabetes
Diabetes are complex diseases from the point of view of their medical management, but also from the social and psychological dimensions whose importance is often underestimated. Thanks to the studies of our Diabète LAB, we produce knowledge to better understand your feelings, your expectations and your needs in order to offer you adapted services, to nourish our advocacy and to strengthen our support actions. Your experience, your mental health and your quality of life are the most important elements on which all efforts and resources should be focused.
We need your participation in our studies to continue to learn more regarding the experience of diabetes, and in particular of people in precarious situations who constitute the majority of people affected by this disease in France. Together, let’s continue this adventure to learn more regarding this essential subject!
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