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

Zandrè Bruwer, Merle Futter, Raj Ramesar

Research output: Contribution to journalArticle

8 Citations (Scopus)

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. Practice implications: Implementation of these findings into the PT programme will have a positive effect on the genetic counseling process.

Original languageEnglish
Pages (from-to)53-60
Number of pages8
JournalPatient Education and Counseling
Volume92
Issue number1
DOIs
Publication statusPublished - Jul 2013

Fingerprint

Hereditary Nonpolyposis Colorectal Neoplasms
Disclosure
Genetic Testing
Neoplasms
Genetic Phenomena
Mutation
Confidentiality
Genetic Counseling
South Africa
Health Personnel
Developing Countries
Counseling
Siblings
Communication
Interviews

Keywords

  • Communication
  • Developing country
  • Genetic counselling
  • Lynch syndrome
  • Predictive testing
  • Qualitative

ASJC Scopus subject areas

  • Medicine(all)

Cite this

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title = "Communicating cancer risk within an African context: Experiences, disclosure patterns and uptake rates following genetic testing for Lynch syndrome",
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. Practice implications: Implementation of these findings into the PT programme will have a positive effect on the genetic counseling process.",
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