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Table 1 Consultations with parents and deliberation questions

From: Communication of Pharmacogenomic test results and treatment plans in pediatric oncology: deliberative stakeholder consultations with parents

Consultation Group

Deliberation Questions

Phase I

 Small-group consultations

1) Bereaved parents

2) Parents of children undergoing treatment

1. What information do you think families would need to understand the results of the genomic test and the implications for treatment?

2. What concerns/problems do you think families might have in accepting treatment plans based on the genomic test?

3. What members of the health care team do you think would need to be involved in discussing the test results with children and families? i.e. the oncologist, the palliative care physician, etc.?

4. Are there any other issues you can think of that may be a problem if this test was part of regular clinical care for children with brain tumors?

Phase II

 Mixed consultation

- Bereaved parents and parents of children undergoing treatment

1. What and how do you think test results and treatment options should be communicated to the parents by the health care team in the initial and subsequent follow-up meetings (if different)?

2. Who do you think should be involved in the initial diagnostic consultation and subsequent meetings about potential treatment options, i.e. clinical and psychosocial support?

3. Would your recommendations from Q1) and Q2) change if the test results indicated a de-escalation of care/therapy? What margin of error do you think would make you accept the test-based diagnosis as “fact”? In other words, how certain is certain?