What new information pediatric autopsies can provide: a retrospective evaluation of 100 consecutive autopsies using family-centered criteria.
OBJECTIVE
To determine the proportions of pediatric autopsies yielding various types of new information (eg, genetic diagnosis, additional explanation) that might be valued by families.


METHODS
Retrospective case series analysis.


METHODS
Large urban children's hospital.


METHODS
One hundred consecutive autopsies, 2003-2004.


METHODS
Using both traditional criteria and a novel classification scheme developed with expert clinicians and nonmedical parent faculty, 3 reviewers independently assessed each case for new information found at autopsy. Classifications were based on unanimous consensus.


METHODS
Proportions of autopsies yielding new information.


RESULTS
Decedents' ages ranged from 1 to 24 years. Using traditional criteria, major unexpected findings related to death occurred in 28% of the autopsies. Applying our novel criteria to the same 100 autopsies, we found new information that had the potential to further clarify the cause(s) of a child's death (53% of cases); inform the future reproductive choices of either the parents (10%) or siblings (8%); affect siblings' future health care (6%); or contribute to patient care quality control (36%) or publishable knowledge (7%).


CONCLUSIONS
Pediatric autopsies can yield different types of information that may be important to families. While the proportion of autopsies providing specific types of new information will vary between hospitals (depending on case mix, autopsy policies, and clinician/pathologist expertise) and across time (depending on available diagnostic modalities), hospital-specific data classified in this manner may be useful to physicians counseling families about autopsy.
Department of General Pediatrics, 3535 Market, Room 1523, The Children's Hospital of Philadelphia, 34th and Civic Center Boulevard, Philadelphia, PA 19104, USA. feudtner@email.chop.edu
James A
JA
Feinstein
Linda M
LM
Ernst
Jaya
J
Ganesh
Chris
C
Feudtner
D000293:Adolescent; D000328:Adult; D000367:Age Factors; D001344:Autopsy; D002423:Cause of Death / Q000639:trends*; D002648:Child; D046688:Child Mortality / Q000639:trends*; D002669:Child Welfare; D002675:Child, Preschool; D005190:Family; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D008297:Male; D009026:Mortality; D012189:Retrospective Studies; D018570:Risk Assessment; D012307:Risk Factors