Patient-centered communication during the diagnostic trajectory in pediatric acute leukemia

Abstract

Receiving a pediatric acute leukemia diagnosis is highly stressful for children and their parents. Studies in adult oncology have demonstrated the relevance of patient-centered communication in supporting patient adaptation to the diagnosis. Research on patient-centered communication and its impact on psychosocial outcomes during the diagnostic trajectory in pediatric acute leukemia remains limited. This study aimed to (1) describe the extent of patient-centered communication through audio recordings, (2) explore its associations with parental psychosocial outcomes, (3) evaluate the acceptability of audio-recording diagnostic conversations and (4) examine parents’ and oncologists’ experiences during the diagnostic trajectory in pediatric leukemia. Parents and oncologists were recruited for this mixed-methods study in which (1) diagnostic conversations were audio-recorded and analyzed using the patient-centered behavior coding instrument, (2) parents completed the PROMIS® anxiety and depression questionnaires after the diagnostic conversation, and their relation with patient-centered communication was explored with multilevel analyses, (3) parents, children and oncologist completed questionnaires about the acceptability of audio-recording the conversation, and (4) semi-structured interviews on parents’ and oncologists’ experiences with diagnostic conversations were thematically analyzed. In total, diagnostic conversations of 46 families were audio-recorded, 63 parents (49% fathers) completed psychosocial questionnaires, 70 family members and 15 oncologists completed questionnaires about the acceptability of audio-recording the conversation, and 30 parents (47% fathers) and 16 oncologists were interviewed. (1) Diagnostic conversations were on average 38 minutes long and oncologists mostly facilitated families to express their perspective during this conversation (M=24.5±13.4) and were limited in their inhibitory communicative behaviors (M=7.1±5.8). (2) Facilitating behavior was associated with lower parent-reported anxiety (B=-0.19, p=0.02). (3) The majority of family members (n=63, 90%) claimed not to feel bothered by the request to record the conversation, while some pediatric oncologists (n=5, 36%) felt bothered to ask the question, mostly assuming the question would overwhelm families. (4) Interviews showed that oncologists tried to balance providing information with monitoring families’ (emotional) capacity to process information, often relying on intuition. Parents tried to regain control by not admitting their emotions during the conversations to process information and to be there for their child. They valued space to express emotions and ask questions freely, rather than being explicitly asked about emotions. Oncologists directed families towards information they deemed helpful, while parents felt uncertain when questions were avoided without clear explanations. They valued transparency behind decision-making. Results show that patient-centered communication is generally well-established during diagnostic conversations in the setting of pediatric acute leukemia. Nevertheless, based on the results, we described several recommendations to support oncologist in recognizing and respecting the needs and preferences of families: (1) ask questions, do not make assumptions, (2) be transparent, (3) balance reassuring information, (4) prioritize empathic responses to emotions over eliciting emotions, (5) be aware of double protection in families. These recommendations could support families’ psychosocial adaptation to receiving this life-changing diagnosis.