lunes, 11 de marzo de 2013

Communicating cancer risk within an Afric... [Patient Educ Couns. 2013] - PubMed - NCBI

2013 Feb 28. pii: S0738-3991(13)00052-9. doi: 10.1016/j.pec.2013.02.001. [Epub ahead of print]

Communicating cancer risk within an African context: Experiences, disclosure patterns and uptake rates following genetic testing for Lynch syndrome.

Source

MRC/UCT Human Genetics Research Unit, Division of Human Genetics, Institute for Infectious Diseases and Molecular Medicine, University of Cape Town and Groote Schuur Hospital, Cape Town, South Africa. Electronic address: zandrebruwer@gmail.com.

Abstract

OBJECTIVE:

Data pertaining to Lynch syndrome within a developing country are sparse. This study explored the emotional reaction to a mutation-positive test result among a group of individuals from South Africa. As genetic information is not only limited to the individual but extends to the biological family, communication patterns and uptake of testing among at-risk family members was also investigated.

METHODS:

Eighty individuals participated in this qualitative interview study.

RESULTS:

Eight emotional reactions were observed, of which two were of particular concern: (1) secrecy due to disbelief and (2) interpretation of a mutation-positive result as a cancer diagnosis. Disclosure rates of personal genetic test results were high to family members, but low to general healthcare providers. Disclosing the test result was not always followed by a discussion of implications of the genetic information or availability of predictive testing for at-risk family members. The uptake rate of predictive testing among the participants' siblings and children was 97% and 73.6%, respectively.

CONCLUSION:

Awareness of concerning emotional reactions following the delivery of a genetic test result and insight into disclosure patterns, especially the information that is not communicated, will prove beneficial in improving the effectiveness of counselling and management in Lynch syndrome families.