What Do You Mean Burden of Care?

Here's an easy to follow definition of disease burden from Wikipedia. It introduces the concept of DALYs in a very easy to understand way. It's too bad that those DALYs aren't banked somewhere so that you can draw on them for help in the future

"Disease burden is the impact of a health problem as measured by financial cost, mortality, morbidity, or other indicators. It is often quantified in terms of quality-adjusted life years (QALYs) or disability-adjusted life years (DALYs), both of which quantify the number of years lost due to disease. One DALY can be thought of as one year of healthy life lost, and the overall disease burden can be thought of as a measure of the gap between current health status and the ideal health status." (from Wikipedia)

Everyone with chronic disease knows almost intuitively about the burden it causes. Time spent in waiting rooms to see innumerable health professionals, and time needed to obtain medications with all of the costs, both direct and indirect involved with them are two of the most intrusive to your life. They are not at all the only issues though.

   My version of Burden of Disease

Just today I read a conversation on the Facebook page of @HurtBlogger about the time wasted by patients trying to access care and medications. This is so wrong. It just makes you wonder if health care professionals realize just how much sheer time and energy is wasted by patients trying very hard to take good care of themselves.

Just today I heard this statement made by @robinff3 (Robin Farmanfarmaian) during her talk at #xMed - The Exponential Medicine 2014 Conference that ended today. "The main cause of people leaving work for disability is all of the appointments and side effects - so much time in the waiting rooms." 

I got started on this topic today because of a twitter exchange I had a few days ago. I was complaining about the fact that my doctor allows one problem per visit. I can understand her time constraints but as a person with a chronic disease that is not in the background like the weather, that does not work for me.

At #Xmed ePatient Dave spoke of making an agenda for his visits and working through it with his doctor, but that is not my reality right now. A helpful doctor on Twitter said that his own approach, which sounds reasonable, is to say that he "wants to address ALL of the patient's concerns, but it will take more visits. It may take 1 a year, it may take 22." (a rough quote)

So that's 22 visits! On top of all the visits we already have. That is no small commitment by the patients. It's 5 1/2  hours to the doctor but to the patients that represents 11 full days easily. Yes patients want to get to the bottom of the problem but 22 visits for one modest list? And this doctor seems friendly and willing to help.

There is a doctor researching this topic. Dr. Victor Montori. He champions Minimally Disruptive Medicine. There's a topic that needs a lot more research from this patient's point of view.

"Patients with multiple chronic conditions are particularly at risk for overwhelming care. For these patients, who represent about 5% of all patients and yet account for about 40% of all health-care costs and service consumption, getting less care, but getting care they need, want and can implement, would offer better value. The opposite, of course, is true for people who get less care than they need."