Beyond screening: challenges in measuring outcomes

Abstract

There are several important messages for pediatricians concerned with what happens to patients after identification through newborn screening. Particularly important in many of the disorders are the developmental aspects of outcome. There are certain basic assumptions that are essential in improving developmental outcome as a result of newborn screening: 1) newborn screening leads to early case identification; 2) early diagnosis and intervention generally enhance developmental outcome; 3) sustained compliance is crucial for better developmental outcome; 4) increased awareness of other factors improves developmental outcome; 5) periodic developmental monitoring ensures quality follow-up. Even though the Philippine Newborn Screening Program is young, there are already experiences in these areas to draw from. Likewise, there are strategies that can be employed to overcome the challenges in a developing country, which can lead to better follow-up, characterized by desirable critical features of availability, accessibility, affordability, accuracy and adequacy.