BRAIN TUMOR CARE THROUGH THE PATIENT'S EYES — THE VALUE OF A COMPREHENSIVE BRAIN TUMOR CENTER

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Abstract

BACKGROUND: (blind field). METHODS: Surveys of patients, caregivers and health care providers were performed by us and others to help identify the patient experience and the suggested means to provide support and improve quality of life. The people and processes needed to provide a comprehensive and supportive experience are discussed. RESULTS: Patients perceive several crises along the treatment continuum from "shock and the unknown" with the initial diagnosis, "anticipation and anxiety" with every new scan, "defeat and limitations" with disease progression and "terminal expectation" towards the end of life. Their desires include honesty, compassion, hope, communication and support services. Continuous follow-up with them and their caregivers minimizes the fear of abandonment with a nurse-navigator being a key person who provides personalized support. The Neuro-Oncologist and multidisciplinary tumor board drive the standard care, with clinical trials providing additional hope. Process improvements, along with symptom management teams comprised of palliative care professionals, can provide maximal supportive services. CONCLUSIONS: A truly multidisciplinary patient and family centered approach needs to be comprehensive, continuous, structured and responsive. A tumor board, neuro-oncologists and nurse navigators are key elements. Palliative care should be renamed "supportive care” and should be utilized along the care continuum. The authors suggest that patients hope and quality of life is optimized with this approach. SECONDARY CATEGORY: n/a.

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