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May 8, 2012

What is Important to Patients? Quantity or Quality of Life?

5 Comments to “What is Important to Patients? Quantity or Quality of Life?”

  1. Vicki Ivancevic said,

    May 9, 2012 @ 12:02 pm

    Hello Dr. Nissenson,

    Thank you for taking the time to write this post. I had originally tweeted this article to Dr. Bob asking what DaVita is doing in this area of quality of life.

    While I appreciate the response, I have a couple of questions:

    1. What is DaVita doing to promote getting patients out of the centers and back home (e.g., home hemo or PD)?
    2. What is DaVita doing in the areas of experimental therapies that would eliminate the need for dialysis altogether (e.g., wearable/implantable devices)?

    I believe that if patient quality of life is to be put at the forefront, then DaVita needs to be a leader in both of these areas.

    Vicki Ivancevic
    DaVita At Home patient (home hemo)

  2. Bob Gutman said,

    May 10, 2012 @ 9:48 am

    Recent encounters with “providers” at Verizon and Apple have lit the way to patient centeredness. After one finally gets through the maze of telephone options, both companies are notable for the evidence that they have clearly been training their employees to evince a caring and knowledgeable voice and attitude, which communicates that they will stick with you until the problem is addressed in a human fashion. On the other hand, my efforts to care for my severely disabled and ill sister have brought me into face to face contact with uncaring offices and docs. They are a disgrace. In order to find someone who would take the time and make the effort, i was forced to make contact with an “opt out” caregiver. What a difference!!! The lessons in this experience are legion and very sad.

  3. Plastic Nephrology said,

    May 10, 2012 @ 7:15 pm

    I think KDQOL is not imperfect , it is far to assess how patients will like us to treat them.
    ICH-CAHPS was designed for Patient Satisfaction in Dialysis population
    I think if one would like to know what makes our patients happy one should assess Patient Satisfaction and not QOL that includes (at least commonly used surveys) mostly Physical performance, Mental status and Social aspect , and very little or not at all of their satisfaction

  4. Ellen Cassidy said,

    February 21, 2013 @ 12:11 pm

    The inability of my dialysis center(I do home peritoneal) to hear my numerous concerns has led me think that I should start a patient support/outreach group to answer the need to be heard. The staff is puzzled by me as I meet the outcomes they consider important, but with a significantly diminished quality of life. The “burden” of treatment is rapidly beginning to outweigh any perceived benefits. I am close to making the decision to withdraw from treatment altogether.

  5. LeVar @ DaVita said,

    February 21, 2013 @ 3:40 pm

    Hi Ellen,

    It isn’t uncommon to want to find others to connect with who understand what you are going through. In fact, we host some online support groups (all ran by patients like you) for this very reason. Take a look at some of the DaVita.com discussion forums here: http://forums.davita.com/forumdisplay.php?32-Share-your-experiences-General-dialysis. Hang in there and don’t forget your in-center team or nephrologist are good resources to chat about other options that might help improve your quality of life.

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