INNV-05. SOCIAL MEDIA AND “TWEET CHAT ANALYSES” TO INFORM QOL AND PALLIATIVE CARE NEEDS IN PATIENTS WITH PRIMARY BRAIN TUMORS

Abstract

Abstract BACKGROUND Despite a standard of care protocol for the treatment of brain cancer, patients often suffer motor and cognitive deficits and chronic exposure to stress and anxiety, detrimental to patient quality of life (QOL). Palliative care addresses patient and care partner (caregiver) QOL needs as a complement to curative treatment, using a team-based, multidisciplinary approach. Elements of palliative care that are highest priority for patients with brain cancer are not known. METHODS A multi-stakeholder group including clinicians, researchers, patients, and care partners convened (hereafter: “stakeholders”), led jointly by a brain cancer patient and health services researcher. The stakeholders identified QOL needs for patients with brain cancer and their care partners, and mapped these needs onto a brain cancer-specific palliative care model. In 2018, patients, researchers, and clinicians participated in two moderated “tweet chats” to test and further inform QOL definitions and palliative care needs (n=79). RESULTS Thematic analysis of tweet chat transcripts revealed patients and care partners were most concerned by: challenging behaviors resulting from tumor and resulting treatment; depression and anxiety; changes in sexuality/intimacy loss; grief over the loss of identity and things one previously enjoyed/was able to do; financial toxicity; changes in close relationships; and dependence on a broader social network. The stakeholders used this work to inform a set of QOL needs and corresponding palliative care elements. Each need was mapped onto a corresponding element for development of a palliative care model. Further research questions were identified to inform further research in this area. CONCLUSIONS Patients with brain cancer have complex QOL needs beyond symptom management. A palliative care model for brain cancer should include a multidisciplinary care team including care partner support and education. In addition to the palliative care physician, additional disciplines may include a social worker, chaplain, mental health professional, and rehabilitative services therapists.