Demograpghic and Epidemiological Characteristics of Subacute Sclerosing Panencephalitis Patients in Pediatric Intensive Care Unit and Attitudes of Their Parents About Home Care

Introduction:Subacute sclerosing panencephalitis (SSPE) is a chronic, progressive, and degenerative infection of the central nervous system caused by measles virus. The first aim of this study was to assess the demographic and epidemiological characteristics of SSPE patients admitted to pediatric intensive care unit (PICU). The second aim was to determine the thoughts of their parents about home care.Methods:Patients with SSPE, who were admitted to our PICU between January 1, 2015 and June 30, 2015, were evaluated retrospectively.Results:Fourteen patients were admitted to the PICU for a total of 16 episodes. Ten (71%) patients were male and 4 (29%) were female. Male-to-female ratio was 2.5. The mean age of the patients was 16.25±1.14 years. Thirteen patients had received their first measles vaccine at the age of 9 months. Ten (71.4%) patients had measles infection at a later time after the vaccination and one (7.1%) patient had measles before vaccination. The mean age at the time of measles infection was 23.81±15.67 months. The mean age at the time of first symptoms was 8.64±3.33 years and the mean duration of latent period was 5.72±2.96 years. Thirteen (81.3%) patients were admitted to the PICU with pneumonia and respiratory failure, 1 (6.2%) was admitted with sepsis, and 2 (12.5%) patients were admitted with neurological problems. None of the parents accepted home care in the study period. Frequent power cuts (80%), poor housing and home conditions (70%), poverty (60%), worries of the parents about home care (60%), and household crowding (50%) were their reasons for not accepting home care.Conclusion:Patients with SSPE may require PICU admission and long PICU stays for respiratory failure and neurologic problems. Palliative care units may be an option when home care is not possible for these patients.