Background
Methods
Research design and recruitment
Informing parents: details regarding the genetic test for HGG treatment decision-making
Consultation design and data collection
Consultation Group | Deliberation Questions |
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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? |
Data analysis and deliberative outputs
Results
Overview of themes and deliberants
Timing of Communication | Topic | Themes | Parents Quotes |
---|---|---|---|
At the initial diagnostic encounter (whether catastrophic diagnosis or not) | Information on the LDT | Benefits/risks Accuracy 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?” |
Phase I small-group deliberative consultations
“One nurse asked me, did you breast feed?” (BP8)
“Did [your child] ever hit his head?” (BP3)
“I asked if [my child] was going to die, and [the surgeon] looked at me and said, well everyone is going to die someday.” (BP1)
“It’s that human side of the doctors, and still that professional side of having to deliver the information.” (BP1)
“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?” (PT3)
“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.” (PT4)
“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.” (BP8)
“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].” (PT1)
“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].” (PT4)
“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.” (BP5)
“You need someone who knows what has been happening [ … ] almost like a bereaved parent, who can guide you through it.” (BP8)
“The first time, we were just sitting in the waiting room, and this guy comes in … we’ve never seen him before and says, your son has a brain tumor. That’s how we found out. I didn’t even know if he was a doctor [ … ] but then the second time, we had all these people and I thought … Oh no, it must be bad. Because the first time, it was the janitor who told me and now we have the social workers here so it must be worse.” (PT2)
“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.” (BP1)
“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?” (BP6)
Whether and when the palliative care team should be introduced was a subject of deliberation amongst bereaved parents. Initially, they disagreed about the timing of the introduction; some felt that the palliative care team should be present at the initial diagnostic encounter, while others felt overwhelmed by the ‘mob of physicians’:“I’m sure it’s in the back of [my other son’s] mind … what if this is genetic and I have it?” (BP4)
“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.”(BP8)
“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.” (PT3)
“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.” (BP8)
“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.” (BP1)
“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?” (PT1)
“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?” (PT4)
“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.” (BP3)