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A Retrospective Evaluation of 100 Consecutive Autopsies Using Family-Centered Criteria

James A. Feinstein, MD; Linda M. Ernst, MD; Jaya Ganesh, MD; Chris Feudtner, MD, PhD, MPH

Arch Pediatr Adolesc Med. 2007;161(12):1190-1196.

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.

Design  Retrospective case series analysis.

Setting  Large urban children's hospital.

Participants  One hundred consecutive autopsies, 2003-2004.

Intervention  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.

Main Outcome Measure  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.

Author Affiliations: Departments of Pathology and Laboratory Medicine (Dr Ernst), Metabolism and Genetics (Dr Ganesh), and General Pediatrics (Dr Feudtner), University of Pennsylvania School of Medicine (Drs Feinstein, Ernst, Ganesh, and Feudtner), Children's Hospital of Philadelphia.

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