Oncologists’ view of informed consent and shared decision making in paediatric radiation oncology☆

Abstract 

Background and purpose

Cure rates of paediatric malignancies have dramatically improved with therapy intensification, at the cost of late treatment side effects. A survey was developed, centred around medulloblastoma scenarios, in order to explore paediatric oncology physicians’ views on discussing late effects and involving parents in treatment decisions.

Materials and methods

Participants were 59 paediatric radiation and medical oncologists or fellows from USA (22), Canada (18), Europe (16), Australia (2), and Asia (1).

Results

Ninety-five percent of respondents indicated late effects discussion prior to multimodality treatment was important. Of those who supported it, 100%, 83%, 64%, and 48% thought discussing cognitive impairment, infertility, stroke, and seizures as potential late effects was important, respectively. Only 71% of respondents believed parents should be involved in treatment decisions, which did not significantly vary by respondent age, country, specialty, gender, or years in practice.

Conclusions

The majority of oncologists who treat children believe discussing late effects with parents is important. However, there is mixed opinion on which late effects should be discussed and whether parents should be involved in deciding which treatments should be pursued. Research into perceived barriers to shared decision making and effective methods of improving the informed consent process in paediatric malignancies is needed.

Keywords: Informed consent, Shared decision making, Paediatric oncology, Radiation oncology, Patient–physician communication