I recently came across a health/medical article that expressed concern about the level of variation in paediatric diabetes treatment between different paediatric endocrinologists. I thought the assumption that there was one best practice approach interesting especially in light of the statement,
“It is fair to say there is no firm direction from the main guidelines in pediatric endocrinology.”(1)
Where there is no firm direction in guidelines (assuming the guidelines have been developed by a creditable institution) it is because there is insufficient evidence to support any firm direction. This can be for a variety of reasons including that there has not been enough research done to support one position or another, there is conflicting evidence or the evidence does not support one option over another. Rather than worrying about treatment variations, I suggest studies should look at outcomes. Perhaps average a1c, admissions to hospital for DKA and severe hypoglycaemia, quality of life scores and mental health indicators.
The indicator that I am interested in as a “patient” or potential patient is the variation in treatment options within particular practices. Does the doctor support MDI and pumps, CGM and standard fingerstick bgm? Are there lots of different MDI regimes to suit the lifestyle decisions of patients? Diabetes is a self-managed disease and there are as many different treatment regimes as there are people with diabetes. What suits me, might be totally inappropriate for others, both in terms of my personal preferences but also my physiology.
I love my pump, I love that it allows me to reduce my basal dose in the early hours of the morning to avoid those 1am mega hypos and the flexibility it gives me to eat or not at whatever time I want. That said however, I think, hypothetically if I had a diabetic child I would most likely think the best thing for them for their first few years of school is no pump and 3 shots a day so they don’t have to take insulin at school. When they were old enough I’d encourage them to use a pump but if they wanted to not pump in the teenage years I’d support their decision making as much as possible to keep them engaged in their own management and to accept ownership of their diabetes. (NB this is my hypothetical thoughts not advice for anyone else). That’s my whole point you have to choose what is going to work for your (or your child’s) diabetes-it’s not the doctors who are going to suffer the 1am hypos or the feelings of isolation/loss of school time/being different because of diabetes in prep school or the inflexibility of a fixed dose regime.
I believe it’s a huge part of an end’s role to help their patients live the life they want whilst having diabetes-NOT to tell you how you have to live. So if you want to climb Mt Everest, go scuba diving or be a dessert taster for a living, there should be a way to do that without sacrificing diabetes management. It’s up to you to find that way and part of that is finding an endo/other healthcare team to can support and assist you.
Do you find your D team helps you do what you want or are they too busy telling you how you should live your life for diabetes?