EOLP-04. When Is It the Right Time? A Qualitative Study of Specialty Palliative Care Timing in Brain Tumor Patients

BACKGROUND Central nervous system (CNS) tumors have high morbidity and mortality. However, the optimal timing for specialty palliative care (SPC) in patients with CNS tumors is unknown. We sought to understand how and when SPC should be involved. METHODS We recruited and interviewed 22 participants: 5 patients and care-partners and 17 clinicians working at the intersection of neuro-oncology and palliative care (PC). Guides were developed from expert input and literature review and domains consisted of perceptions around SPC referral and optimal timing of referrals. We recruited through a single hospital clinic for patients and care-partners and purposeful snowball sampling for clinicians based upon expertise PC (research or clinical). Two investigators independently coded all transcripts. Using a phenomenological approach, we conducted thematic analysis to identify emerging themes. RESULTS The mean age of participants was 45 years old; 50% were female. Clinician participants practiced for a mean of 12 years. From the interviews, we identified five main themes: 1) Timing of SPC for high-grade tumors should be done earlier and time-based (initial radiation and adjuvant chemotherapy cycles), while timing of SPC for low-grade tumors are variable and could be trigger-based; 2) the evolving treatment landscape of secondary CNS tumors and CNS lymphoma makes timing of SPC more variable; 3) neuro-oncology patients have unique supportive care needs, with cognition and physical debility being the most common; 4) SPC knowledge of neuro-oncology is important to referring neuro-oncologists to provide individualized anticipatory guidance for patients and care partners; and 5) Availability of SPC resources makes referral at diagnosis difficult and is a major barrier to referring. CONCLUSIONS This is the first study exploring optimal timing of SPC in patients with brain tumors. Patients with high-grade tumors may benefit from time-based SPC; patients with low-grade tumors would benefit from trigger-based SPC. Additional patients and care-partners will be interviewed in an ongoing basis.