Patients with fragile X syndrome attending a specialized centre in Chile: parent satisfaction, costs and adherence

Abstract

The study aim was to evaluate the administration and achievements of a Fragile X syndrome (FXS) centre in Chile. Families with children with FXS who sought care at our centre (CDTSXF) answered a survey to evaluate parent satisfaction. We analyzed adherence to management and the costs of CDTSXF operation. The percentage of parents satisfied with CDTSXF management ranged from 38% for speech development, to 100% for general management. The financial costs covered 70% of economic costs of centre operation. Patient adherence was associated with the age at admission to CDTSXF. Low satisfaction with language development could be attributed to low treatment adherence. The CDTSXF should study different mechanisms of financing its operation, estimate the cost of FXS for families, and improve treatment adherence among older patients.