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), oncologists strive to align therapy with goals of care. Ethical challenges can arise around decision making for care. OBJECTIVE Qualitatively evaluate factors impacting longitudinal decision making for patients with HGGs, their families and oncologists. METHODS English-speaking patients ages 0-21 with diffuse intrinsic pontine glioma, glioblastoma multiforme, or secondary HGG were eligible. Key decision making visits (e.g. MRI reviews) and patient/parent semi-structured interviews were serially audio-recorded. Oncologist questionnaires were obtained. Transcribed audio-recordings were coded with inter-rater reliability assessment. Constant comparison analysis continued with MAXQDA until thematic saturation. RESULTS Of 34 eligible patients, 22 were approached; 15 participated; 1 withdrew upon transferring care. Mean age: 9.9 years (SD 5.9); 71% male, 50% Caucasian, 29% African American, 14% Hispanic, and 7% Asian. On average, 4 encounters (2.5 hours)/patient were recorded. Parent/patient interview themes included: 1) hope (for cure, time, quality of life), 2) physician recommendations, 3) support systems (family, community, social media), 4) food (as cancer etiology, intervention) 5) finances (personal, research funding), 6) communication (with 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. CONCLUSIONS Decisions are multifactorial for patients with HGGs as families balance optimism about treatment efficacy with poor prognosis. Acknowledging families’ shifting hopes allows for changes in goals and shared decision making.