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A preliminary investigation of genetic counselors' information needs when receiving a variant of uncertain significance result: a mixed methods study.

Scherr CL, Lindor NM, Malo TL, Couch FJ, Vadaparampil ST - Genet. Med. (2015)

Bottom Line: Although most did not indicate how additional information would be used, some reported they would provide information directly to patients, and others reported that the information would be used to contextualize the VUS result when counseling patients.This analysis identified information that genetic counselors believe is needed in VUS reports, indicating what they believe are best practices in lieu of guidelines for laboratories currently providing genetic testing services.Future studies should explore how genetic counselors use additional information contained in VUS reports.Genet Med 17 9, 739-746.

View Article: PubMed Central - PubMed

Affiliation: Health Outcomes and Behavior Program, H. Lee Moffitt Cancer Center, Tampa, Florida, USA.

ABSTRACT

Purpose: The aim of this study was to explore genetic counselors' information preferences on reports of variant of uncertain significance (VUS) results from cancer genetic testing.

Methods: This mixed methods report (quantitative and qualitative approaches) utilized a survey of genetic counselors containing closed- and open-ended questions to explore genetic counselors' information needs and perceptions of the industry's current information sharing practices. Descriptive statistics were calculated for responses to the closed-ended questions, and thematic analysis guided the interpretation of the open-ended questions.

Results: Of the 267 participants (28.6% response rate), the majority indicated a perceived lack of information on VUS laboratory reports, were concerned about the perceived practice of withholding information, and stated the information they wanted to see. Although most did not indicate how additional information would be used, some reported they would provide information directly to patients, and others reported that the information would be used to contextualize the VUS result when counseling patients.

Conclusion: This analysis identified information that genetic counselors believe is needed in VUS reports, indicating what they believe are best practices in lieu of guidelines for laboratories currently providing genetic testing services. Future studies should explore how genetic counselors use additional information contained in VUS reports.Genet Med 17 9, 739-746.

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Related in: MedlinePlus

Preferred format for professional education/information (N = 267).
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Figure 1: Preferred format for professional education/information (N = 267).

Mentions: To capture GCs’ perceptions about the amount of information included on BRCA VUS reports, participants selected one of three response options to the following statement: “In your opinion, the amount of information currently provided by Myriad Genetic Laboratories1 about BRCA VUS results is: too much, just right, or too little.” GCs were asked to indicate which resources they used and how often when VUS results were received, and which guidelines they referred to and how often when counseling patients with VUS results (see Table 2 for response options). GCs were asked to indicate the clinical screening they recommend for patients based on receiving a VUS test result. Response options included: counsel as if positive result (full high-risk surveillance), counsel based on family history and other risk factors, or other. Finally, GCs were asked to indicate the preferred source for receiving professional education and information on VUS reclassification (see Table 3 for response options) and preferred channel of communication (see Figure 1 for response options).


A preliminary investigation of genetic counselors' information needs when receiving a variant of uncertain significance result: a mixed methods study.

Scherr CL, Lindor NM, Malo TL, Couch FJ, Vadaparampil ST - Genet. Med. (2015)

Preferred format for professional education/information (N = 267).
© Copyright Policy
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4496326&req=5

Figure 1: Preferred format for professional education/information (N = 267).
Mentions: To capture GCs’ perceptions about the amount of information included on BRCA VUS reports, participants selected one of three response options to the following statement: “In your opinion, the amount of information currently provided by Myriad Genetic Laboratories1 about BRCA VUS results is: too much, just right, or too little.” GCs were asked to indicate which resources they used and how often when VUS results were received, and which guidelines they referred to and how often when counseling patients with VUS results (see Table 2 for response options). GCs were asked to indicate the clinical screening they recommend for patients based on receiving a VUS test result. Response options included: counsel as if positive result (full high-risk surveillance), counsel based on family history and other risk factors, or other. Finally, GCs were asked to indicate the preferred source for receiving professional education and information on VUS reclassification (see Table 3 for response options) and preferred channel of communication (see Figure 1 for response options).

Bottom Line: Although most did not indicate how additional information would be used, some reported they would provide information directly to patients, and others reported that the information would be used to contextualize the VUS result when counseling patients.This analysis identified information that genetic counselors believe is needed in VUS reports, indicating what they believe are best practices in lieu of guidelines for laboratories currently providing genetic testing services.Future studies should explore how genetic counselors use additional information contained in VUS reports.Genet Med 17 9, 739-746.

View Article: PubMed Central - PubMed

Affiliation: Health Outcomes and Behavior Program, H. Lee Moffitt Cancer Center, Tampa, Florida, USA.

ABSTRACT

Purpose: The aim of this study was to explore genetic counselors' information preferences on reports of variant of uncertain significance (VUS) results from cancer genetic testing.

Methods: This mixed methods report (quantitative and qualitative approaches) utilized a survey of genetic counselors containing closed- and open-ended questions to explore genetic counselors' information needs and perceptions of the industry's current information sharing practices. Descriptive statistics were calculated for responses to the closed-ended questions, and thematic analysis guided the interpretation of the open-ended questions.

Results: Of the 267 participants (28.6% response rate), the majority indicated a perceived lack of information on VUS laboratory reports, were concerned about the perceived practice of withholding information, and stated the information they wanted to see. Although most did not indicate how additional information would be used, some reported they would provide information directly to patients, and others reported that the information would be used to contextualize the VUS result when counseling patients.

Conclusion: This analysis identified information that genetic counselors believe is needed in VUS reports, indicating what they believe are best practices in lieu of guidelines for laboratories currently providing genetic testing services. Future studies should explore how genetic counselors use additional information contained in VUS reports.Genet Med 17 9, 739-746.

Show MeSH
Related in: MedlinePlus