Less Joint Decision Making Reported for Pediatric Tumors

NEW ORLEANS — For the treatment of pediatric brain cancer, more than 25% of radiation oncologists said they would not expect parents to partake in decision making for scenarios with a high risk for neurocognitive impairment, according to a study by Dr. Robert Olson, a resident in radiation oncology at the University of British Columbia in Vancouver.

“Cure rates for pediatric cancers have risen, but at the cost of increased late effects. Historically, physicians have decided on the trade-off between cure and late effects. More recently, patients' right to choose their own risk/benefit ratio has been accepted in adult oncology, but it is less accepted in pediatric oncology, and oncologists' views about joint decision making have not been well evaluated,” Dr. Olson said at the meeting.

The survey, developed by the British Columbia Cancer Agency, collected demographic information, practice patterns, and views on informed consent and joint decision making from 56 oncologists, 84% of whom were radiation oncologists. They primarily practiced in the United States (39%), Canada (30%), and Europe (25%), for a mean of 19 years.

Shared decision making was defined as a process in which the patient and the clinician share information with each other, take steps to participate in the process, and agree on a course of action. Patients can delegate the decision to the physician, but would share in the discussion first, Dr. Olson noted.

Several hypothetical cases were presented to illustrate the difficulty in quantifying the risk/benefit ratio and the complexity of discussions.

The first case involved a 5-year-old boy with metastatic medulloblastoma to the craniospinal axis for which radiation treatment would likely cause severe cognitive impairment. In this scenario, 100% of respondents said they would discuss cognitive side effects with the parents, and 84% said they would find these discussions stressful. The more complicated scenario was case number two, involving a 4-year-old boy with a completely excised medulloblastoma that was confined to the posterior fossa. The treatment choices were radiotherapy with minimally intense chemotherapy, which offered an 80%-90% chance of cure but a high risk of neurocognitive impairment, and high-dose chemotherapy with stem cell rescue, which offered a 40%-70% chance of cure but a low risk for neurocognitive impairment. For treatment, 84% of respondents chose radiotherapy, which could be partly explained by the fact that most responders were radiation oncologists.

For this scenario, 72% of respondents indicated that there was a role for joint decision making with parents, whereas 23% felt there was not. Their answers did not differ significantly according to age, sex, country, years in practice, time spent with patients, and number of new patients per year.

The oncologists' comments for this scenario included: “Parents must have a say and a choice of treatment”; “Clinicians should guide but not burden the parents to decide”; and “It is important not to make the parents the final deciders, as they may well carry significant guilt if there are adverse outcomes.”

“It is worrisome that only [three-quarters or less] of oncologists feel that parents should have a say in these treatment decisions,” Dr. Olson remarked, “but, still, there has been a shift toward shared decision making compared to a time when parents were not often given a say at all.”

NEW ORLEANS — For the treatment of pediatric brain cancer, more than 25% of radiation oncologists said they would not expect parents to partake in decision making for scenarios with a high risk for neurocognitive impairment, according to a study by Dr. Robert Olson, a resident in radiation oncology at the University of British Columbia in Vancouver.

“Cure rates for pediatric cancers have risen, but at the cost of increased late effects. Historically, physicians have decided on the trade-off between cure and late effects. More recently, patients' right to choose their own risk/benefit ratio has been accepted in adult oncology, but it is less accepted in pediatric oncology, and oncologists' views about joint decision making have not been well evaluated,” Dr. Olson said at the meeting.

The survey, developed by the British Columbia Cancer Agency, collected demographic information, practice patterns, and views on informed consent and joint decision making from 56 oncologists, 84% of whom were radiation oncologists. They primarily practiced in the United States (39%), Canada (30%), and Europe (25%), for a mean of 19 years.

Shared decision making was defined as a process in which the patient and the clinician share information with each other, take steps to participate in the process, and agree on a course of action. Patients can delegate the decision to the physician, but would share in the discussion first, Dr. Olson noted.

Several hypothetical cases were presented to illustrate the difficulty in quantifying the risk/benefit ratio and the complexity of discussions.

The first case involved a 5-year-old boy with metastatic medulloblastoma to the craniospinal axis for which radiation treatment would likely cause severe cognitive impairment. In this scenario, 100% of respondents said they would discuss cognitive side effects with the parents, and 84% said they would find these discussions stressful. The more complicated scenario was case number two, involving a 4-year-old boy with a completely excised medulloblastoma that was confined to the posterior fossa. The treatment choices were radiotherapy with minimally intense chemotherapy, which offered an 80%-90% chance of cure but a high risk of neurocognitive impairment, and high-dose chemotherapy with stem cell rescue, which offered a 40%-70% chance of cure but a low risk for neurocognitive impairment. For treatment, 84% of respondents chose radiotherapy, which could be partly explained by the fact that most responders were radiation oncologists.

For this scenario, 72% of respondents indicated that there was a role for joint decision making with parents, whereas 23% felt there was not. Their answers did not differ significantly according to age, sex, country, years in practice, time spent with patients, and number of new patients per year.

The oncologists' comments for this scenario included: “Parents must have a say and a choice of treatment”; “Clinicians should guide but not burden the parents to decide”; and “It is important not to make the parents the final deciders, as they may well carry significant guilt if there are adverse outcomes.”

“It is worrisome that only [three-quarters or less] of oncologists feel that parents should have a say in these treatment decisions,” Dr. Olson remarked, “but, still, there has been a shift toward shared decision making compared to a time when parents were not often given a say at all.”

NEW ORLEANS — For the treatment of pediatric brain cancer, more than 25% of radiation oncologists said they would not expect parents to partake in decision making for scenarios with a high risk for neurocognitive impairment, according to a study by Dr. Robert Olson, a resident in radiation oncology at the University of British Columbia in Vancouver.

“Cure rates for pediatric cancers have risen, but at the cost of increased late effects. Historically, physicians have decided on the trade-off between cure and late effects. More recently, patients' right to choose their own risk/benefit ratio has been accepted in adult oncology, but it is less accepted in pediatric oncology, and oncologists' views about joint decision making have not been well evaluated,” Dr. Olson said at the meeting.

The survey, developed by the British Columbia Cancer Agency, collected demographic information, practice patterns, and views on informed consent and joint decision making from 56 oncologists, 84% of whom were radiation oncologists. They primarily practiced in the United States (39%), Canada (30%), and Europe (25%), for a mean of 19 years.

Shared decision making was defined as a process in which the patient and the clinician share information with each other, take steps to participate in the process, and agree on a course of action. Patients can delegate the decision to the physician, but would share in the discussion first, Dr. Olson noted.

Several hypothetical cases were presented to illustrate the difficulty in quantifying the risk/benefit ratio and the complexity of discussions.

The first case involved a 5-year-old boy with metastatic medulloblastoma to the craniospinal axis for which radiation treatment would likely cause severe cognitive impairment. In this scenario, 100% of respondents said they would discuss cognitive side effects with the parents, and 84% said they would find these discussions stressful. The more complicated scenario was case number two, involving a 4-year-old boy with a completely excised medulloblastoma that was confined to the posterior fossa. The treatment choices were radiotherapy with minimally intense chemotherapy, which offered an 80%-90% chance of cure but a high risk of neurocognitive impairment, and high-dose chemotherapy with stem cell rescue, which offered a 40%-70% chance of cure but a low risk for neurocognitive impairment. For treatment, 84% of respondents chose radiotherapy, which could be partly explained by the fact that most responders were radiation oncologists.

For this scenario, 72% of respondents indicated that there was a role for joint decision making with parents, whereas 23% felt there was not. Their answers did not differ significantly according to age, sex, country, years in practice, time spent with patients, and number of new patients per year.

The oncologists' comments for this scenario included: “Parents must have a say and a choice of treatment”; “Clinicians should guide but not burden the parents to decide”; and “It is important not to make the parents the final deciders, as they may well carry significant guilt if there are adverse outcomes.”

“It is worrisome that only [three-quarters or less] of oncologists feel that parents should have a say in these treatment decisions,” Dr. Olson remarked, “but, still, there has been a shift toward shared decision making compared to a time when parents were not often given a say at all.”