Table 4.
Modifications to communication protocol resulting from stakeholder (patients and genetic counselors) surveys (n=86) and session tape reviews (n=33).a
| Modifications to the communication protocol | Reason for tape review | Reviewer observations | Patient comments | GCbcomments |
| 1. Clarified telephone disclosure (TD) instructions in pre-test counseling |
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-Visual aid: read in advance and have for session | -Visual aid: read in advance and have for session |
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-Schedule sufficient time for session and processing | -Schedule sufficient time for session and processing |
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|
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-Have support person | -Have support person |
| 2. Scheduled TD appointments | -Increase in anxiety or depression or decline in knowledge | Session occurred in non-private environment without visual aids | -Session was disrupted (eg, workplace, childcare) | -Session was disrupted (eg, workplace, childcare) |
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-Session disrupted other activities | -Difficult to reach patient (“phone tag”) |
| 3. Refined visual aids |
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Visual aids confusing | Visual aids confusing |
| 4. Improved disclosure checklist: | -Increase in anxiety | -Some elements of disclosure checklist omitted |
|
Who else is on call/present? |
| -Enhanced formatting |
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| -Included information on GINAc |
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-Patient concerned about genetic discrimination |
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|
| 5a. GC training: | -Increase in anxiety or depression | -High baseline anxiety | -Communication challenging without visual cues | Interpreting patient affective response and providing emotional support challenging without visual cues |
| -Recognizing signs of negative affect in the absence of visual cues | -Patient/GC discordance | -Inaccurate expectations |
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| -Effective use of affective and situational probes |
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| -Need to pace session to meet patient needs |
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|
| -Identifying risk factors for negative affective response | -Positive test result | -Personal history of cancer | -Need to be prepared for all results |
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-Treatment decision pending |
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-Family history (uninformative or extensive cancer) |
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-Need for additional tests (self or family members) |
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| 5b. GC training: | -Decline in knowledge | Low health literacy |
|
Interpreting patient cognitive response and providing remediation challenging without visual cues |
| -Identifying risk factors for confusion |
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| -Recognizing signs of confusion |
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| -Techniques to improve patient comprehension | -VUSdtest result |
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| -Effective use of knowledge and situational probes and “teach back” to assess understanding |
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| 5c. GC training: | -Decline in knowledge |
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-Responding to challenging patients/situations |
| -Effective use of situational probes to control situation |
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-Controlling the session |
| 6. Conduct larger trial to evaluate outcomes for potentially vulnerable subgroups | -Positive test result | -Need for additional testing (self or family members) | TD might be more challenging in some situations (eg, Positive test result, need for additional testing, poor understanding after pre-test counseling, psychological factors) | TD might be more challenging in some situations (eg, Psychosocial comorbidities, English as a second language, pending treatment decisions, personal cancer history) |
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-VUS test result | -Personal history of cancer |
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-Family history of cancer |
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-Increase in anxiety or depression | -Uninformative negative result |
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-Insurance issues |
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aBased on a priori review criteria
bGC: genetic counselor
cGINA: Genetic Information Nondiscrimination Act
dVUS: variant of uncertain significance