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.

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

Picelli, Alessandro;Varalta, Valentina;Santini, Barbara;Filippetti, Mirko;Smania, Nicola;Di Censo, Rita
2026-01-01

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.
2026
caregiver burden
informal caregiving
multidisciplinary care
neuro-oncological rehabilitation
primary cerebral Ewing’s sarcoma
psychological support
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Utilizza questo identificativo per citare o creare un link a questo documento: https://hdl.handle.net/11562/1186130
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