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    Tuesday, September 05, 2006

    Measuring Quality of Life: Not surprisingly, if it's your life, it has a higher quality for you than for others:

    For many premature, severely underweight babies, life will be filled with challenges.

    As these babies grow up, they are more likely than normal-weight babies to have problems walking, hearing, speaking and seeing.

    They are more likely to need regularly prescribed medication, special diets, physical therapy, and special educational arrangements.

    They are at greater risk for cerebral palsy, asthma and a low IQ.

    But guess what?

    These kids grow up to think they're doing just fine, according to research in this week's edition of the journal Pediatrics.

    In interviews with 130 young adults who were born at normal weight and 143 young adults who were born weighing between 1.1 pounds and 2.2 pounds, Canadian researchers found little difference in how the two groups viewed their health-related quality of life.

    People, (that is, doctors) who aren't living their lives, judge it differently:

    The findings were greeted with ``some skepticism and disbelief,'' the study points out. According to the naysayers, the positive responses had to be due to ``denial and self-deception.''

    Come, come now. You're suffering. You just don't know it. The study actually found the former preemies to have more physical disabilities as adults, but they didn't let their limitations color their lives:

    Extremely low birth weight young adults reported more functional limitations in cognition, sensation, mobility, and self-care, compared with control subjects. There were no differences between groups in the mean self-reported, health-related, quality of life or between impaired (n = 38) and nonimpaired (n = 105) extremely low birth weight subjects.

    That seems like a healthy attitude, and one that we should be encouraging, not discouraging as "denial."

    posted by Sydney on 9/05/2006 07:49:00 AM 2 comments


    Way back when, I did some writing on the ethics of cost-effectiveness analysis in health care. The real sticking point was the quality-adjusted year of life. We realized exactly what these doctors have not- that is- while disability is not desirable, once it is present, it does not devalue life. I remember seeing a table of quality values- heck, they even counted off for wearing glasses. I wear glasses. Right then and there, I had a paradigm shift. Maybe these doctors just need to see how many "disabilities" they have on the list.

    By Anonymous Dani, at 8:33 AM  

    This bias is especially prevalent today when looking at conditions or physical characteristics that are looked down upon by our culture, including many things seen as a disability such as aging, moblity issues, and fatness.

    Sydney beautifully countered the low weight viewpoints, but the very same arguments about denial and self deception are used against fat children and adults all the time.

    By Anonymous Anonymous, at 10:40 AM  

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