By Dr Shane O’Donnell, Post Doctoral Researcher, ARCH
One of the biggest challenges to living with a chronic condition is the process of keeping track of all the variables that impact on your health and wellbeing. How much medication did you take? How many walks did you go for last week? Did you do all the exercises prescribed to you by your physical therapist?
With type 1 diabetes, the process of self-monitoring is particularly vital, but also particularly difficult. The conventional wisdom surrounding type 1 diabetes management is that it is all about diet – if you eat healthily, avoid sugar and keep taking your insulin then everything will be fine. The reality is that diabetes is a 24-hour all-encompassing illness and there is far more complexity involved in its successful management than conventional wisdom would have us believe. For me, diabetes is as much a psychological condition as it is a physical one and a lack of understanding of the impact of the former on one’s blood sugars can have detrimental consequences for self-management.
Take, for example, the largely antiquated view that those living with type 1 diabetes cannot eat cake or drink alcohol. For me, alcohol consumption is a relatively easy task to manage as far as my self-management goes because the impact it has on my glucose is largely measurable. For me, one pint of Guinness is roughly equivalent to two units of insulin. Taken at the right time, those two units will safely prevent any significant increase in my blood sugar as a result of me drinking a carbohydrate dense pint of the Black Stuff.
In contrast, a bad night sleep for people with diabetes can set off a chain reaction of physiological events such as increased resistance, appetite deregulation and fatigue which make insulin treatment largely guess work.
Thus without an intimate knowledge of the impact of variables such as diet, exercise and physical activity but also stress, sleeplessness and pain, the patient is likely to experience unexpected or unexplained deviations in their blood glucose, often causing further frustration and distress, thereby having an impact on motivation. An incomplete picture also limits the ability of healthcare professionals to assist patients in adjusting their self-care practices to achieve optimal diabetes outcomes.
Furthermore, a delicate balancing act exists in keeping glucose levels within clinically recommended target ranges (usually between 4 and 8 millimoles). A lack of engagement with the disease management process means the patient is likely to experience hyperglycaemia (>8) which increases the risk of longer term complications. However, excessive attempts to keep glucose levels within range can also lead to insulin overdosing and frequent hypoglycaemia (<4), the symptoms of which may include dizziness, inability to concentrate and, in extreme cases, unconsciousness or coma. The psychological impact of this careful balancing act is significant and can often lead to heightened anxiety, burnout and depression.
Part of the psychological distress may be explained by the actual burden associated with traditional approaches to self-monitoring, whereby patients are expected to maintain a meticulous record of their glucose levels through paper-based diaries. These diaries are typically not very user friendly and can be alienating for those with limited levels of literacy or poor handwriting.
Given how many variables impact on the management of diabetes on a daily basis, it is not surprising to find that those with high levels of self-efficacy and disease management knowledge find it difficult to maintain such records over a sustained period.
I have written in this blog previously (Diabetes and the Great Technology Divide) about how connected health has the potential to transform the lives of people with diabetes and people with chronic conditions more generally. However, in my opinion, the impact of digital solutions in alleviating the burden associated with self-monitoring has thus far yet to reach its true potential.
Take, for example, the huge number of really well designed daily diabetes diaries currently available on the app market. Many of these apps are highly sophisticated in allowing you to track diet, insulin physical activity but also mood states.
While there is some evidence that these apps can improve adherence in the short run, there is little evidence that patients are willing to use them on a continuing basis. Much of the problem is that the vast majority of these apps require the user to input information manually which is highly time-consuming and therefore can quickly get dropped as a priority.
What’s required therefore are self-monitoring tools that are largely non-invasive and run in the background of the person’s day-to-day life. There are many connected health innovations currently availble which, if brought together, could help to automate the process of self-monitoring for people with diabetes and thus develop a truly holistic form of care.
Here at ARCH, we are aiming to work with leading diabetes healthcare professionals, the HSE and industry to launch a highly ambitious project that will make automating the process of self-monitoring of diabetes and other chronic conditions a reality. If you would like further information on this project, please contact Dr Shane O’Donnell on firstname.lastname@example.org.
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