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Table 2 Overview of Topics and Themes Discussed in the Phase I Small-Group Deliberative Consultations

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

Timing of Communication Topic Themes Parents Quotes
At the initial diagnostic encounter (whether catastrophic diagnosis or not) Information on the LDT Benefits/risks
Treatment implications
“But then on top of accuracy, I think you would want to know … as a parent, if you’re getting the treatment, what is your child going to choose? What are the chances of curing it? Is it worth it?”
“If the [HGG] can be diagnosed in a blood test, that kind of takes out that whole … You know, is any parent going to agree to a biopsy? We were told it was a pretty high risk; she could have come out of it paralyzed.”
Delivering the diagnosis Honesty, empathy, and compassion
Use of medical jargon and clarity
“I asked if [my child] was going to die, and [the surgeon] looked at me and said, well everyone is going to die someday.”
“It’s that human side of the doctors, and still that professional side of having to deliver the information.”
“But thank goodness, most of them are honest, and that’s what we needed. And I think that’s important for physicians and oncologists to know that.”
“I had no idea what [the diagnosis] was […] I didn’t even know [my child] had cancer until they presented us with this clinical trial and as my mom was reading the drugs, she’s like … well that’s chemotherapy. And then, I’m like … [my child] has cancer?”
“I kept telling people, oh no, my son doesn’t have cancer. It’s just a low grade glioma. He doesn’t have cancer […] and then the Canadian Cancer society sent us a letter saying [my child] is registered as a cancer patient. Oh okay – maybe it’s cancer then […] but I haven’t heard [cancer] from a doctor. [...] The [doctors] try to help us to cope, you know. But sometimes it’s better you give us some straight information.”
Support Personnel Emotional support
Communication support
Genetic Counselling
“You need someone who knows what has been happening […] almost like a bereaved parent, who can guide you through it.”
“Maybe it’s the social worker or someone else who comes in to take notes […] because you’re listening but you’re not really listening. As soon as the diagnosis comes in, it’s like bla bla bla, the teacher from Charlie Brown.”
“If you can test for this, then I want my other children tested … because if it’s in the DNA, they would see that as a whole family thing as I can imagine […] I would just sit there and think … is this going to happen to my other child?”
“I’m sure it’s in the back of [my other son’s] mind … what if this is genetic and I have it?”
Once a catastrophic diagnosis is confirmed (either at initial diagnosis or at a relapse/treatment failure) Communicating bad news and acceptance of diagnosis Validating prognosis with second opinions
Evidence supporting prognosis
Multiple meetings with repetition of information
Maintaining hope
Coordinated message among clinical team members
Continuity of care and trust building
“So I think, if it’s something that they’re saying, “Yes, this is certain,” I think they should be prepared for parents to say, “What is that second opinion? I need to hear this from somebody else, and maybe even from a third person, before I’m going to accept this.” Because we, even though they gave us the worst news, we looked for alternative medicines and all sorts of different things online, just like anybody else I’m sure. But that’s the process that any parent, I think, is going to go through; so they have to prepare those answers […]”
“And have the backup of … “It’s not just this result; we’ve also got the MRI. We’ve also got …
“If you have more pieces [of information] that you can put together later when you’re thinking about the [encounter] then it’s a little bit easier.”
“It took a while to register. It took at least 4 meetings with [our doctor] before it got into our heads that there is nothing [they can do].”
“If your child is in the 1% that doesn’t respond to anything, you’re taking away their hope. And the human spirit and hope is a huge factor. If you believe in something and have faith that something is going to work, sometimes [it works].”
“One doctor came in and said, we’ve got bad news, the drug didn’t work and you guys are going to go into radiation. Then he left and another doctor comes in and says, oh we have wonderful news, we’re going to start the radiation soon. One doctor is telling you one thing, and the other says wonderful news. Which one is it?”
“I mean, that’s one of the biggest problems too, right, is that you’re always seeing a different doctor […] And if one of them brought this new test, to give this … And you didn’t know that doctor, and you hadn’t seen them much before, and you didn’t quite like them […] to trust that this test was useful or that you would want to do it […] But they all seem to work that way now. You don’t see the same doctor. It’s always somebody else.”
Palliative care team Introduction Timing of introduction “It’s almost like they were all there to protect themselves from us freaking out on them. I don’t know. I felt a little up against the wall with so many people being there delivering that news.”
Once the diagnosis is understood and accepted Communicating Treatment Options Honesty
Unbiased and clear information
“We needed someone to say to us that chances are, even if it does work, [your child] will probably not last another year … So how do you want that year to go? A lot depends on what the physicians are telling you.”
“It’s going to be tough for the physicians to give the right “answer” [regarding treatment options]. They gave us both sides of the coin […] Ultimately, it’s a chance of a chance, but you as parents are the ones that have to make that decision. And I think that’s tough for a lot of parents to hear. Even though they are not the professional, they will still have to make that choice at some point. Our care was amazing […] it was always that honest, up front, there isn’t hope but we’ll help you if you want to look at other things … We’ll help you if you want to do these trials, but we’re also here to make [your child’s] life as comfortable as possible for what we think is left of it.”
Meeting following the presentation of treatment options Treatment Decision-Making Quality of life as a primary concern
Involving the child in decision-making
“The worst part was chemotherapy. […] At that time you think you’re doing the right thing, because that’s what they are telling you to do […] They’re sick, then they’re skinny, then they’re fat, then they’re skinny, then they’re fat. Thinking back on it now, I wish I would have just taken him home and enjoyed my time with him.”
“You have your discussion with the doctor and then bring [your child] in after and say,[…] we’ve been discussing different [treatment] options and what we think is best for you is this. And what do you think? Do you have any questions?”