HGG-09. DECISION MAKING IN THE FACE OF INCURABLE HIGH GRADE GLIOMAS: A QUALITATIVE ANALYSIS

Abstract

Background: For children/young adults with incurable high grade gliomas (HGGs), like diffuse intrinsic pontine glioma (DIPG) or glioblastoma multiforme (GBM), oncologists endeavor to align therapy with patient/family goals of care, but may be influenced by providers' preferences or limited resources. Ethical challenges can arise around the perceived purpose, risks and benefits of therapy options, provider conflicts of interest, access to care, deciding decisional priority between patients and families, and conflicts around end-oflife care. Objectives: Evaluate factors that play into longitudinal decision making for children and young adults with HGGs, their families and oncologists using a qualitative approach with ethnographic elements. Design/Method: Eligible patients were aged 0-21 with DIPG, GBM, or secondary HGG. Patient exclusions included: non-English speaking, in state custody, death prior to diagnosis, seen by oncology once, or an oncologist declined participation. Key decision making visits (e.g. MRI reviews) were serially audio-recorded, along with subsequent 1:1 semistructured interviews with patients and/or parents about the decision making process. Field notes from clinician meetings, chart notes, and oncologist questionnaires were obtained. Discussions and interviews were transcribed and independently coded by three investigators. Inter-rater reliability was assessed during code book development. Discrepancies were discussed until consensus met. Constant comparison analysis with MAXQDA software continued until thematic saturation. Results: Twenty-two of 34 eligible patients were approached; 15 agreed to participate. One withdrew upon transferring care. Mean age was 9.9 years (SD 5.9); 71% male, 50% Caucasian, 29% African American, 14% Hispanic, and 7% Asian. Four encounters, (2.5 hours), were recorded on average per patient. Parent/patient interview themes included: 1) hope (for a cure, prolonged life, and quality of life), 2) importance of physician recommendations, 3) importance of support systems (family, community, social media), 4) food (as cancer etiology, intervention) 5) finances (personal, research funding), 6) communication (with medical providers, family, community), 7) death, and 8) God (beliefs, prayer, existential questions). Oncologists desired prolonged quality of life, while patients/families transitioned to that hope from hope for a cure. Conclusion: Decisions made in the setting of HGGs are multi-factorial, ultimately reflecting the competing values of decision makers. Optimism about treatment efficacy is held in tension with poor prognosis, allowing for functional hope. Acknowledging patients' and families' shifting hopes allows for changes in goals of care and shared decision making. Future work is needed to 1) develop preference tools for pediatric patients and families to inform medical providers and 2) provide training in communication and shared decision making with oncologists.