Sharing decisions during diagnostic consultations; an observational study in pediatric oncology

Abstract

Objective: Children and parents need to make important decisions in the period of being informed about the diagnosis of childhood cancer. Although parents' and children's involvement is legally required, it is unclear whether oncologists involve them. This study explored which decisions families face, how oncologists involve them in shared decision-making (SDM) and which factors are associated with this process.

Methods: Forty-three families with children, starting treatment for childhood cancer, were recruited from three Dutch academic pediatric oncology clinics. Diagnostic consultations were audio-taped and coded with the OPTION.

Results: On average, 3.5 decisions were discussed per consultation. Most frequently discussed decisions concerned registration in a patient database (42%) and how to deal with hair loss (33%). Oncologists' assistance in SDM focused on giving information and ensuring the parents' and the child's understanding. The hospital in which children were treated (F(2,2)=5.39, p=.01) and discussing trial participation (F(1,1)=8.11, p=.01) were associated with oncologists' assistance.

Conclusion: Decision-making during diagnostic consultations appears to focus on non-treatment related decisions. Oncologists' assistance mostly concerned sharing information, instead of SDM.

Practice implications: Additional research is needed to provide insight in how to increase oncologists' assistance, while taking into account children's and parents' preferences concerning SDM.

Keywords: Audio recordings; Decision-making; Involvement; Pediatric oncology; Preferences.