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Genet Med. 2016 Dec;18(12):1308-1311. doi: 10.1038/gim.2016.45. Epub 2016 May 5.

Family health history reporting is sensitive to small changes in wording.

Author information

1
Northwestern University, Evanston, Illinois, USA.
2
Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.
3
Department of Medicine, Harvard Medical School, Boston, Massachusetts, USA.
4
Division of Genetics and Genomics, Boston Children's Hospital, Boston, Massachusetts, USA.
5
Division of Developmental Medicine, Boston Children's Hospital, Boston, Massachusetts, USA.
6
Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
7
Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, Boston, Massachusetts, USA.
8
Children's Hospital Informatics Program at the Harvard-MIT Division of Health Sciences and Technology, Boston Children's Hospital, Boston, Massachusetts, USA.
9
Center for Patient Safety and Quality Research, Boston Children's Hospital, Boston, Massachusetts, USA.
10
Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
11
Partners Personalized Medicine, Boston, Massachusetts, USA.
12
Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, Massachusetts, USA.

Abstract

PURPOSE:

Family health history is often collected through single-item queries that ask patients whether their family members are affected by certain conditions. The specific wording of these queries may influence what individuals report.

METHODS:

Parents of Boston Children's Hospital patients were invited to participate in a Web-based survey about the return of individual genomic research results regarding their children. Participants reported whether 11 types of medical conditions affected them or their family. Randomization determined whether participants were specifically instructed to consider their extended family.

RESULTS:

Family health history was reported by 2,901 participants. Those asked to consider their extended family were more likely to report a positive family history for 8 of 11 medical conditions. The largest differences were observed for cancer (65.1 vs. 45.7%; P < 0.001), cardiovascular conditions (72.5 vs. 56.0%; P < 0.001), and endocrine/hormonal conditions (50.9 vs. 36.7%; P < 0.001).

CONCLUSIONS:

Small alterations to the way family health history queries are worded can substantially change patient responses. Clinicians and researchers need to be sensitive about patients' tendencies to omit extended family from health history reporting unless specifically asked to consider them.Genet Med 18 12, 1308-1311.

PMID:
27148937
PMCID:
PMC5097687
DOI:
10.1038/gim.2016.45
[Indexed for MEDLINE]
Free PMC Article

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