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."

The Tremendous Effort To Look Normal

At the MedCity ENGAGE Conference recently Dr. Victor Montori made this statement about chronically ill patients. "They look normal because of their tremendous effort to look normal."

@AfternoonNapper alerted me to the closing speech of this conference given by Dr. Montori, whose name is strongly associated with the concept of the  "burden of care" that is shouldered by chronically ill patients.  I am sure that all of you with one or more complicated conditions said at this point "I know exactly what you mean by that."  @AfternoonNapper also says "Montori has emerged as a general in the Spoonie army"

                                             General of the Spoonie Army            AMcKinnon

Another term that I had never heard until I started to read medical papers and articles was CCC which stands for Complex Chronic Conditions.  There are few organizations that acknowledge this reality and the efforts necessary for patients who are trying to do less and still maintain good health.  I found one example in BridgePoint Health, as an organization that is trying to use a new strategy to deal with these issues by using "nimble and flexible" strategies through collaborations that put the patient at the center of care.

We need to try to advance to minimally disruptive care with patient centered strategies and it is possible to do it.  As an example: I went to a hospital once for pre-op appointments and instead of being sent all over the hospital there was a central core area with patients in little rooms all around the room.  The various blood tests and info gathering that had to occur were done by a team that circulated around the perimeter with great efficiency as the patients waited in one place.  That's a pretty basic example yet it made the afternoon of appointments so much less stressful.

                                         Patient centered care (me in the middle)

The issues of compliance and concordance in my last blog post could be improved by making the care process easier and more coordinated.

I was working on this post for a few days and I went back to twitter to see what Afternoon Napper had been saying, only to see this link at the top of my Tweet stream. Re-imagining Healthcare: The Northwest Territories Transitions to an Integrated Chronic Disease Management Strategy. Since chronic disease accounts for 70% of deaths and 50% of hospital stays in that area, a new strategy for dealing with chronic disease is seen as necessary and this paper details efforts in the Northwest Territories.

Unsurprisingly Afternoon Napper had a lot to say and pointed the way to another blog about Minimally Disruptive Medicine. I liked the Goldilocks synonym best of course. 

                                                         This porridge is too hot

In this interesting blog by Carolyn Thomas of Heart Sisters you can read more about burden of treatment and also on Marianna Paulson's Rheumful of Tips blog.  I did not expect to find so much information on this topic - clearly I am behind the curve.

The whole paper is here: Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice.