[Several approaches for quality of life in intractable disease].
[Several approaches for quality of life in intractable disease].
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Original abstract
Life quality is various among patients. In this article, it is shown that several progresses of both physical and psychological care for those patients during resent 15 years which we have had Japanese National Project for the quality of life in intractable diseases. Of course total cure of the disease is the best for the patients, but the second best is continuous better patient care. Total respiratory care of amyotrophic lateral sclerosis including non-invasive positive pressure ventilation and systematic approach of respiratory rehabilitation are good examples of better physical care. The approach with SEIQoL-DW is another good trial to evaluate and maintain their psychological condition. These should be also useful to another intractable diseases such as multi-system atrophy, spino-cerebellar atrophy or Parkinson disease. Long term contribution of multi-disciplinary care team of individual patient has to be needed to make the better effort for the patient support now. We should have more options of treatment, rehabilitation or social life support those with which the patients could decide to have their favorable life with intractable disease.