Abstract
The prognosis for childhood nephrotic syndrome is generally quite positive. However, patients and their families always worry about relapses and the side effects of drugs. Three years ago, we established “Soramame no Kai”, a society for nephrotic syndrome patients and families, to help relieve the stress associated with the condition. Here we report the results of a survey of patients and families, affected by the disease.
Results of the survey, show that the actual health condition of patients was not bad, and yet 27% of patients and 8.1% of families were suffering stress as a result of the disease. Stress scores were high in the following groups: younger age (<6 years old) patients, recently diagnosed patients (<2 years), recently relapsed patients (<6 months), and frequently relapsed (>5 times) patients. Their families were particularly stressed about the future for the family member suffering from the disease. This survey showed that families needed more detailed information about daily life management and treatment. Communication and the exchange of information among patients and families in “Soramame no Kai” would help with these problems.
