ABSTRACT
Ongoing advancements in the pre-and postoperative care of
the neonate with a surgical condition have enabled the survival
of an increasing number of infants with congenital malforma-
tions. For decades, surgeons have insisted on a regular self-
examination of outcomes in order to ensure the optimal
treatment of our patients. Outcome analysis traditionally
relates to the rudimentary end result of an operation utilizing variables such as mortality, operative time, specific complica-
tion rates (i.e. incidence of esophageal stricture following
esophageal atresia repair), and hospital length of stay, to
name a few. Recently, outcomes research has become a more
complex endeavor. Measures of long-term outcomes, including
‘functional outcome’ and ‘health-related quality of life’ are
equally important to the morbidity sustained as a result of a
congenital malformation and its attendant surgical correction.
The methods by which subjective assessments are expressed as a
quantitative measure are therefore important for the surgeon to
understand. These data serve as an important adjunct to
prenatal counseling, offer information about future health
expectations for families, assist the surgeon in identifying
potential improvements in perioperative management, and will
likely be utilized by public agencies charged with implementing
health policy, especially in an era of diminishing resources.
Therefore, long-term outcomes are of specific import to the
neonates we care for, the families we answer to, and our
colleagues charged with the continued efforts to improve the
surgical care of our youngest patients. This chapter will begin
by focusing on the specific language and methodology of
modern long-term outcomes research as a prelude to the
current status of long-term outcomes assessment in newborn
surgical conditions commonly treated by the pediatric surgeon.
In 1934, Ernest A Codman, an orthopedic surgeon, espoused
the ‘end result idea’. In his book The shoulder, Dr Codman
introduced this ‘common sense notion that every hospital
