Quality of Life (QoL): Are patients speaking the same language as doctors?

One of the primary reasons there is such a great abundance of weblogs on living with diabetes is how it affects a person’s Quality of Life (QoL). This is also a term used frequently in scientific research and in studies which assess clinical outcomes in chronic disease. Diabetes is at the forefront; many researchers are trying to figure out the relationship between a diabetic’s QoL, their health status, avoiding complications, and helping doctors to manage compliant versus noncompliant patients. My question is: What comes first? The chicken or the egg?

A simple definition for Quality of Life is a person’s ability to enjoy life and pursue happiness. A Health Care Provider (HCP) or scientist may view QoL in a different way. QoL as defined by the CDC goes something like this:

“to measure the effects of chronic illness in their patients to better understand how an illness interferes with a person's day-to-day life…”

which may be important in determining which treatment option is best. "Treatment option" is key here, because after dx, a doctor is skilled mostly in a broad capacity to prescribe. Whether or not the doctor takes QoL variables into consideration is the luck of the draw. I believe most HCP’s define QoL purely as a question of physical status, ie, vital stats. Many HCP's infer that impaired health leads to impaired Quality of Life and excellent health leads to an excellent Quality of Life. See Article. My blood sugar control may be on target, but regardless of my well-being or “high” health status, my QoL is perceived by me to be somewhat low. This is why we all would sacrifice many things in our lives for a cure. Right? I would argue that a person’s access to relevant information, power to choose best treatment plan, and an ability to self-coach, negotiate and resolve issues daily with a chronic illness are all strong indicators of a more positive health status, but not necessarily indicators of an excellent QoL. For individuals, what is the best way to define QoL? And is QoL an indicator of positive medical outcomes? Or is our Quality of Life adversely affected by diabetes regardless of medicine (well..obviously not discounting the fact we are still alive!)? And finally, is QoL an indicator of a diagnoses for diabetes to start with?

What are your thoughts on how to assess Quality of Life and living with diabetes? There are millions of papers out there…some good, some not so. I have listed a few below. More importantly, I am attaching one of the most widely used QoL Assessment Tests for patients with diabetes. It is called the SF-36. Take it for free here and get an immediate score and interpretation. (Fill out the log-in registration -- it will just take a few seconds). My score was: Physical = 56 and Mental = 53 out of 70. What does it mean really? “That I am doing better than most ….”

Articles you may want to check out:
UKPDS 37
Interpreting the SF-36
One group of doctors noted that the SF-36 made modest gains in positively impacting the medical outcomes of patients’ HbA1c and so they made two additions to the the questionaire here.
Another test for young adults with diabetes ADDQol (no online testing available)