Abstract
IntroductionBrain metastases are associated with high morbidity and mortality. With the implementation of effective treatments, long-term survival is possible for some patients. However, most patients still die of their disease. The uncertain prognosis and potentially high symptom burden make managing these patients complex. We aimed to identify the unmet needs in the care of patients with brain metastases.MethodConsecutive patients with melanoma or NSCLC brain metastases completed questionnaires assessing distress (distress thermometer), quality-of-life (FACT-general), and information provided on potential symptoms, supportive care, and do-not-resuscitate code (study-specific questionnaire) between Nov’18-Nov’19. Separate focus groups were organized with patients with melanoma brain metastases, primary caregivers of deceased patients, and general practitioners. The results were discussed with hospital-based healthcare professionals to identify additional issues.ResultsQuestionnaires were completed by 59 patients (25 melanoma, 34 NSCLC) at a median time after brain metastases diagnosis of 11.5 months (range: 0.7–88). Thirty-five patients (59%) experienced distress (distress thermometer ≥4), and 20 patients (34%) expressed interest in supportive care. Furthermore, 40 patients (68%) remembered being informed about potential brain metastases symptoms, and 18 patients (31%) would have liked more information on potential symptoms. Psychosocial support was offered to 31 patients (53%) and 17/51 primary caregivers (33%). Patients emphasized that, despite potential information overload, they preferred to be fully informed about potential symptoms, treatments including outcomes, and psychosocial support availability. Caregivers highlighted the caregiver burden and importance of advance care planning. General practitioners were keen for guidelines on brain metastases symptom management in the home setting. Hospital-based professionals advocated a structured approach, with early identification of palliative care needs and an overview of involved healthcare professionals.ConclusionOur results highlight the need for structured, multidisciplinary management of patients with brain metastases with special attention to symptom and caregiver burden, information provision, and advance care planning.
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