gms | German Medical Science

Background: Diabetic kidney disease (DKD) is a major health problem worldwide. Current diabetes treatment strategies aim to reduce the risk of major adverse cardiovascular events and loss of kidney function. A patient-centered approach along the different stages of diabetes including kidney disease should have a positive impact on the overall outcomes.

Aim: The objective of this study was to better understand the attitude, expectations and unmet needs of patients suffering from DKD. The focus was on information and need for guidance to better cope with the disease.

Methods: We undertook a qualitative research in 3 big cities in Germany end of September 2017. Patients with Diabetes mellitus type 2 (T2DM) and DKD (n=19) were interviewed in group discussions à 120 minutes. All patients (n=19) participated in a follow-up call of 10-15 minutes 2 months after the group interviews. In addition diabetes nurses (n=5) were invited to single interviews à 60 minutes.

Results: Once diagnosed, most patients with T2DM are well informed about diabetes and many are eager to control their disease to stop any further complications arising in the future. Kidney disease as a potential complication is not emphasized at the time of diagnosis of diabetes for different reasons – no specific therapy available/fear to demotivate or ask too much of the patients. When patients finally become aware of their kidney disease, it remains a lower priority relative to diabetes and other major health conditions. Some patients feel guilty and wish they would have been better informed so they could have been more adherent to recommendations given by doctors and diabetes nurses on therapy and lifestyle changes. The group discussions were positively perceived, had motivational impact and some patients reconsidered their attitude and approach to deal with the disease. The primary source of information most trusted is the one given by doctors and medical personal. Information exchange with peers is considered of high value. Only limited information material on diabetic kidney disease is available.

Discussion/conclusion: Patients wish that dialogue around the risk of developing other comorbidities, such as kidney disease, started around the time of diabetes diagnosis, was more emphasized to allow a sense of ‘warning’ and motivation to make lifestyle and dietary changes early on, rather than feeling shock and regret when they realize comorbidities have become more serious.

Diabetes nurses would like to have more information material on diabetic kidney disease to better support patients.

Doctors and diabetes nurses are the primary source of information. Exchange with peers can lead to reconsideration of own disease management approach.

This qualitative approach should be followed by a quantitative research.

Practical implications:

• Doctors and diabetes nurses to include diabetic kidney disease in the overall patient information/education in a patient-tailored manner and actively addressing comorbidities including diabetic kidney disease over the course of the disease.
• Availability of appropriate information/educational material for patients to improve understanding and adherence to therapy.
• Involvement of patients and diabetes nurses in the development of such materials to ensure focus on most relevant aspects written in easily understandable language.
• Raise public awareness for link between diabetes and potential kidney failure.