The most important thing we still do not understand about diabetes mellitus

The other day I received a telephone call from Susan, the tearful mother of a former patient of mine.  She told me that her son, Robert, died the day before.  Robert had been diagnosed with type 1 diabetes at age 6 years, and died a few days before his 43rd birthday.  Through the sobbing, I learned that for the past year Robert had been on dialysis for  diabetic kidney failure, and that his unexpected death was somehow related to either an infection or a high calcium level.  I had cared for Robert’s diabetes from diagnosis until he “graduated” from the pediatric diabetes program, when he graduated high school.  I had been able to keep track of him since then, because his father, Larry had been a study volunteer in the Diabetes Complications Trial (DCCT) from the beginning in 1983, and I had been seeing him for an annual health assessment since the initial phase of the study ended in 1993.  Unfortunately, Larry died from a massive myocardial infarction earlier this year.  So, 2016 has not been a good year for Susan.  What makes this sad story even sadder is that Robert’s untimely death, and probably that of his father, could have been prevented.

What causes diabetes complications?

The chronic complications of both type 1 and type 2 diabetes are generally classified as either microvascular or macrovascular.  The microvascular complications include diabetic eye disease (retinopathy), diabetic nervous system disease (neuropathy), and diabetic kidney disease (nephropathy).  The macrovascular complications include arteriosclerotic heart/blood vessel disease and stroke.  Based on results from many studies, most notably the DCCT, its follow-up study called the Epidemiology of Diabetes Complications and Interventions )EDIC), and the United Kingdom Prospective Diabetes Study (UKPDS), we know that three risk factors account for well over 90% of a patient’s risk of dying from a diabetes complication: high blood pressure, high blood glucose levels, and abnormal blood lipid levels (low levels of the “good cholesterol,” HDL, and/or high levels of the “bad cholesterol” (LDL).  Of course there are many other factors that influence any one patient’s risk for developing this or that complication, but the “big three” listed above are by far the most important.   We also know that these three risk factors can be well controlled using current therapies.  If this is new news to you, I suggest you read some of my earlier entries regarding these issues.

So why did Robert and Larry, despite having easy access to excellent diabetes care, do so poorly with their diabetes (e.g., persistently high HbA1c levels, tobacco use, abnormal lipid levels), and why are people like Robert and Larry still suffering and dying prematurely from diabetes complications?

Current diabetes therapies: imperfect, yet effective

For patients, their families, and for health professionals caring for patients with diabetes, achieving and maintaining well-controlled diabetes is no easy matter.  Let alone the day-to-day challenges that diabetes presents to patients and their families, depending on where a person lives, and their health insurance status, it can be difficult for them to find knowledgeable and caring health professionals.  Most diabetes experts acknowledge that we need more health professionals (physicians, nurses, dietitians, etc) with expertise in managing diabetes.

But, in my opinion, the single biggest challenge a patient with diabetes faces is his or her own attitude.  I have been caring for patients with diabetes for nearly 50 years, and over the years it has become painfully clear to me that there are two different types of patients with diabetes: those who are not afraid to tackle whatever obstacles life presents to them, including diabetes, and those who deal with life’s obstacles and challenges by inaction.  So it is basically the “I can do this” and the “I just can’t do this” personality types.  I haven’t a clue what accounts for these striking personality differences.  It definitely isn’t related to IQ or socioeconomic status.  Clearly, there must be a number of different psychological mechanisms (e.g., denial, depression, fatalism) that can explain the reasons why some people tackle their diabetes, while others more or less, just stand around.  The sad fact is that we health professional colleagues who care for patients with diabetes have come to understand that we rarely ever succeed in persuading people who are doing poorly with their diabetes care, despite access to excellent medical care, and knowledge about the health care risks they are facing, to do what they need to do to stay healthy despite having diabetes.   We health providers just do not have the skills needed to change basic personalities.  It is really as simple as that.  As far as I am concerned, this represents the single greatest challenge in diabetes today; if only we understood how to change attitudes in those who accept their fate with their diabetes, into “take charge” attitudes.  If we could do that, even given the limitations of current diabetes therapies, we could dramatically alter patients’ diabetes outcomes.

Does that mean it is not worth spending extra time with those patients who are not doing well with their diabetes?   Of course not.  We need to do our best to identify patient behaviors and other factors that might be contributing to their poor diabetes self-care, and to offer suggestions on how to modify them.  Occasionally we can make a difference, and that possibility is worth the effort.  But, what would help most (other than a “cure” for diabetes) would be for all you psychologists and psychiatrists out there to find out how to modify what in some patients with diabetes are self-destructive behaviors.

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