Management of Informal Caregiver Burden in a Case of Primary Cerebral Ewing's Sarcoma: A Case Report

原发性脑尤文氏肉瘤患者非正式照护者负担管理:病例报告

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Abstract

BACKGROUND: Primary cerebral Ewing's sarcoma is a rare and aggressive brain tumor with poor prognosis and limited treatment guidelines. This case describes the assessment and management of caregiver burden for the patient's sister during the rehabilitation pathway. CASE PRESENTATION: A 57-year-old man with primary cerebral Ewing's sarcoma deteriorated rapidly and required care from his 50-year-old sister. Her burden was assessed using the Zarit Burden Interview (ZBI) and the Caregiver Reaction Assessment Scale (CRAS). Interventions included psychological support, relaxation techniques, respite scheduling, and regular multidisciplinary meetings. These efforts reduced caregiver strain and improved perceived support. Patient-Reported Experience Measures (PREMs) showed high satisfaction with inpatient care but revealed gaps in community care continuity. CONCLUSION: Caregiver-centred models and improved transitional care should be incorporated into the treatment of rare, high-burden neurological conditions.

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