Longevity of patients born with myelomeningocele

There are limited data concerning the life expectancy for individuals born with myelomeningocele (MM), with and without hydrocephalus. To ascertain su ch data was our first purpose. We have selected ail patients with MM in our computer database, The Patient Data Management System (PDMS/fx). Data were transferred to Excel for primary and SPSS/PC for final analysis by Kaplan- Meier life survival curves. Of the 1054 patients with MM in the Birth Defec ts Clinic and the University of Washington Medical Center (UWMC) of Seattle , 505 are now over the age of 21 (391) or have died (114), Follow-up inform ation was available since 1994 for 132, 62% of whom we have had contact wit hin the past 2 years. The second purpose was to identify potential health f actors associated with long-term outcome of patients with MM. Patient varia bles chosen as relevant to survival included hydrocephalus, treatment befor e or after 1975, and health maintenance determined by outcome for those rec eiving care within the last 5 years or those last seen before, Age at last appointment and reason for visit were determined in order to identify age-s pecific health care needs of the adult population. Survival and medical nee ds were obtained from the UWMC's computer database, Mindscape, and by telep hone survey for adult patients not seen in the last 2 years. Death is more frequent earlier in life for those MM patients with hydrocephalus. Ordinary degenerative disorders affect MM patients earlier in life than normals. Ou r data extend life expectancy for patients with MM and hydrocephalus to age 40 years with some reliability for those treated from 1957 to 1974, but on ly 24 years for those treated with modern techniques after 1974. More data is needed to determine long-term survival.