Article

 

Genetic Information-Seeking Behaviors and Knowledge among Family Members and Patients with Inherited Bone Marrow Failure Syndromes Público Deposited

Contenido Descargable

Descargar PDF
https://ir.library.oregonstate.edu/concern/articles/2227mr418

Descriptions

Attribute NameValues
Creator
Abstract
  • Inherited bone marrow failure syndromes (IBMFS) including Fanconi anemia, dyskeratosis congenita, Diamond-Blackfan anemia, and Shwachman-Diamond syndrome are rare genetic disorders characterized by hematologic complications and increased risk of cancer. Patients and their families likely experience obstacles in obtaining sufficient health information given their disorders’ rarity. To investigate this possibility, we examined information-seeking behaviors and levels of general and disorder-specific genetic knowledge among 315 members of 174 families with an IBMFS, and how information-seeking behaviors and socio-demographic factors may be associated with their genetic knowledge. Cross-sectional survey data indicated that participants were most likely to have ever used the Internet or healthcare providers for genetic information. On average, participants correctly answered 57% of items assessing general genetic knowledge and 49–59% of disorder-specific knowledge items. Greater knowledge was associated with greater education and ever experiencing genetic counseling, attending a scientific meeting, and seeking information from the Internet and scientific literature. Among families with Fanconi anemia (whose family support organization has the longest history of providing information), greater disorder-specific genetic knowledge was also associated with seeking information from support groups and other affected families. Results suggest that families with IBMFS have uncertainty regarding genetic aspects of their disorder, and highlight potential channels for delivering educational resources
  • Keywords: Information seeking, Dyskeratosis congenita, Shwachman-Diamond syndrome, Diamond-Blackfan anemia, Genetic literacy, Genetic counseling, Inherited bone marrow failure syndromes, Fanconi anemia
Resource Type
DOI
Fecha Disponible
Fecha de Emisión
Citation
  • Hamilton, J. G., Hutson, S. P., Frohnmayer, A. E., Han, P. K., Peters, J. A., Carr, A. G., & Alter, B. P. (2015). Genetic Information-Seeking Behaviors and Knowledge among Family Members and Patients with Inherited Bone Marrow Failure Syndromes. Journal of Genetic Counseling, 24(5), 760-770. doi:10.1007/s10897-014-9807-3
Journal Title
Journal Volume
  • 24
Journal Issue/Number
  • 5
Declaración de derechos
Funding Statement (additional comments about funding)
  • This research was supported in part by the Intramural Research Program of the Division of Cancer Epidemiology and Genetics (DCEG) of the National Cancer Institute (JAP, BPA), and by contract HHSN261200655001C with Westat (AGC). JGH was supported in part by the National Cancer Institute Cancer Prevention Fellowship Program. PKJH was supported by the National Human Genome Research Institute through the Intergovernmental Personnel Act.
Publisher
Peer Reviewed
Language
Replaces

Relaciones

Parents:

This work has no parents.

Elementos