By Charline Coquerel, R&D lead in Global Patient Relations | 4 min read
The study, “Kidney Connect,” which presents real, day-to-day challenges of people with diabetic kidney disease, was initiated by the Kidney Association and sponsored by Novo Nordisk. It was conducted to meet the increasing demand for information and other support services from the Kidney Association’s 5,000 members. Further external consultants and partners include Steno Diabetes Center, Type1, and the Danish Diabetes Association. The key messages of the study were:
• The concept quality of life is about more than physical health.
• Diabetes complications are a package.
• Claiming ownership of my diabetes care is all-important.
Quality of life
The theme quality of life recurs throughout the survey. Patients and doctors may not have the same understanding of what the patient thinks is important for his healthcare and there may be a recognition from the doctor that quality of life is much more than physical health.
Maintaining patients’ quality of life is the primary goal and has several aspects for patients.
Anecdotes from the survey interviews point out that more important than extending life may be the simple wish to walk again, for example, which can be accomplished through therapy, or the ability to enjoy a holiday abroad or maintain aspects of the patient’s previous lifestyle with family and friends.
Putting it together
Diabetic kidney disease is associated with a number of health problems including hypertension, neuropathy, retinopathy, sexual dysfunction, cardiovascular disease, anaemia/low blood count, skin disorders, and diabetic foot ulcers, among others.
Often, individual symptoms are targeted independently, and the connection to diabetes is missed. And often, although the doctor sees and treats the discrete symptoms, patients see them as a whole.
Although patients would benefit from having their symptoms treated holistically, they still find themselves running from one doctor’s office to another, as well as to dialysis. And often they find themselves receiving contradictory advice. For example, finding a diet that is suitable for both nephrology and diabetes may solve many uncertainties relating to diet.
Claiming ownership of your illness
On a scale of being in compliance to non-compliance with therapy, patients have many reasons and motivations for rebelling against therapeutic regimes or, conversely, for making routines personal and habitual.
Of course, ignoring treatment regimens can have serious consequences.
First, peer to peer motivation cannot be overestimated. It is tremendous. We can use this to move passive people into a more active role by sharing knowledge and experiences with people in the same situation.
Second, apps and social media can be used to chart the progress of your disease and share information with peers.