Burden of Kidney Disease

I just finished reading some paperwork that I found in Joe's dialysis bag and it was quick an eyeopener for me.  Apparently he recently took part in an individual survey regarding his feelings about dialysis and renal failure. 

There was a physical component summary (PCS) score that reports how you feel about your physical health.  In the survey, he was asked if he could do things like climb stairs, move a table, or push a vacuum.  The average PCS score for others on dialysis in the U.S. who are male, about his age and have diabetes is 34.3.  His score was 41.2 which means that he may be as likely to need hospital care as most people on dialysis.  And, he may live about as long as others like himself whose scores are in this range.

Then there was the mental component summary (MCS) which reports how he feels about his mental and emotional health.  He was asked in the survey, whether he felt calm, had enough energy or felt blue.  The average MCS score for others on dialysis in the U.S. who are male, about his age and have diabetes is 50.5.  His score was 46.9 which means that he may be as likely to need hospital care as most people on dialysis.  And, he may live about as long as others like himself whose scores are in this range.

The shocking and stunning question on the survey was the Burden of Kidney Disease which measures his feelings about how much kidney disease affects his life.  He was asked if kidney disease takes up too much time, frustrates him or makes him feel like a burden on his family or others.  The average score for this one is 45.2.  His score was 6.2!  This means that he feels he is less able to deal with the burdens of kidney disease and treatment than many others on dialysis.

Questions I would have about this though would include (keeping in mind that all of his other scores were average), did he really understand and hear the questions that he was answering?  Where these questions asked to him?  I do know that yes he does have problem handling his bieng on dialysis.  We've talked about it at length many, many times.  That's one of the reasons he gets upset with me is that I don't understand it as well as he wishes I could/would.  Joe does need someone to call when he gets frustrated.  He doesn't have anyone.  I do and am fortunate about that.