Oncologist approaches to communicating uncertain disease status in pediatric cancer: a qualitative study

Abstract

Background Most patients with cancer and their caregivers desire honest, clear prognostic communication, yet oncologists often disclose prognosis inconsistently. Prognostic communication becomes even more challenging when disease progression is unclear or equivocal. Presently, oncologist approaches for discussing uncertain disease findings are poorly understood. Methods In this prospective, longitudinal study, we audio-recorded serial disease reevaluation conversations between children with high-risk cancer, their families, and their primary oncologists over 24 months and conducted content analysis at recorded timepoints when oncologists categorized disease progression as equivocal. Results Of the 265 medical discussions recorded across the illness course for 33 patient-parent dyads, a total of 40 recorded discussions took place at equivocal timepoints, comprising > 500 min of medical dialogue. Prognosis talk encompassed < 3% of dialogue and was absent in nearly half of equivocal discussions (17/40, 42.5%). Curability statements were identified in only two conversations. Inductive content analysis of dialogue revealed four distinct patterns for communicating equivocal disease status: (1) up-front reassurance, (2) softening the message, (3) describing possible disease progression without interpretation, (4) expressing uncertainty without discussing the bigger picture. Conclusion Oncologists rarely discuss prognosis with children with high-risk cancer and their families at timepoints when disease progression is not definitive. Formal guidance is needed to better support oncologists in navigating uncertainty while sharing honest, person- and family-centered information about prognosis.

Mixed‐methods analysis of decisional regret in parents following a child's death from cancer

“…As a dimension of preparation, clinical teams may help dismantle this false dichotomy by critically employing nuanced communication techniques and avoiding ambiguous statements in order to build shared understanding with families, even in the context of uncertainty. 42,43 Most parents rated communication and trust highly, but neither were quantitatively associated with decisional regret. Our qualitative data expand on previous findings that positive relationships and quality communication with the oncology team were associated with less decisional regret following treatment decision-making and bereavement.…”

“…In our in‐depth qualitative analysis of parental responses, 9 quotes from parents in our sample who felt unprepared often alluded to a false binary: giving up on their child versus trying every available intervention. As a dimension of preparation, clinical teams may help dismantle this false dichotomy by critically employing nuanced communication techniques and avoiding ambiguous statements in order to build shared understanding with families, even in the context of uncertainty 42,43 …”

Factors influencing parents’ choice of palliative treatment goals for children with relapsed or refractory neuroblastoma: A multi‐site longitudinal survey study

“…Although most pediatric cancer patients and their parents express a desire for honest prognostic information, 18,19 deficits in both quality and quantity of prognostic communication persist 15,19,20 . Previous work revealed how oncologists infrequently discussed prognosis during disease reevaluation time points with children with advanced cancer and their families 15,21,22 . In the absence of clear prognostic communication, parents often overestimate their child’s likelihood of cure 11,15,23 and risk pursuing unrealistic primary treatment goals that increase symptoms and distress, 4 impact location of death, 10,24 and complicate grief and bereavement 25 .…”

“…15,19,20 Previous work revealed how oncologists infrequently discussed prognosis during disease reevaluation time points with children with advanced cancer and their families. 15,21,22 In the absence of clear prognostic communication, parents often overestimate their child's likelihood of cure 11,15,23 and risk pursuing unrealistic primary treatment goals that increase symptoms and distress, 4 impact location of death, 10,24 and complicate grief and bereavement. 25 This study has several limitations.…”

Managing Prognosis in Precision Medicine: Utility, Imagination, and Communication

“…Prognostic communication remains particularly challenging when patients have cancers with poor prognoses or especially when the prognosis is less certain. In these cases, studies have shown that pediatric oncologists temper their assessment of poor prognosis when speaking with families or avoid the discussion altogether, especially during periods of disease stability or when disease progression is unclear or equivocal [ 55 , 56 , 57 ]. Whether there are similar or different types of gaps in communication about the implications of genomic testing and results in children and neonates still needs to be explored, particularly in cases of clinical uncertainty or genetic results with uncertain significance.…”