O9.02NEEDS OF INFORMAL CAREGIVERS OF PRIMARY MALIGNANT BRAIN TUMOR PATIENTS IN THE UNITED STATES AND THE NETHERLANDS: AN INTERNATIONAL COMPARISON

摘要

OBJECTIVE: Spouses, family members or friends of patients with high-grade gliomas often have to take on the role of primary informal caregiver, providing daily emotional and instrumental support. For these informal caregivers, the patients' additional neurological symptoms can pose great challenges, which may be influenced by sociodemographic and cultural aspects. We investigated the presence and resolution of needs in two longitudinal samples of caregivers of patients with high-grade gliomas, one from the United States and one from the Netherlands. METHODS: US and Dutch caregivers participating in large, longitudinal studies completed questionnaires about their needs after the patient's diagnosis, and at 4, 8 and 12 months follow-up. The patients provided information on their disease-specific symptoms. We evaluated differences between US and Dutch caregivers in terms of demographics, and the proportion of needs present and met within samples. Specific needs were described. RESULTS: US (N = 50) and Dutch (N = 66) caregivers were comparable in terms of the patient's diagnosis and most disease-specific symptoms. US caregivers reported 50.6% of needs present at baseline, of which 88.1% were met sufficiently. In contrast, Dutch caregivers reported 86.7% of needs present at baseline, of which 48.6% were met sufficiently. In the Dutch sample, the prevalence of caregiver (unmet) needs decreased significantly during follow-up (p = 0.032 at 12 months), while this was not the case for the US sample. In addition, specific unmet needs in US caregivers appear to be related to the phase of the patient's disease, e.g. needs regarding changes in the relationship with the patient emerge after diagnosis, while dealing with the patient's distress and obtaining services become more evident at 4- and 8-months follow-up, respectively. In Dutch caregivers, this is less clear. CONCLUSIONS: Both US and Dutch caregivers of patients with high-grade glioma have a large number of needs, and not all needs are sufficiently met. This may provide leads to improve support for caregivers in clinical practice, both in the Netherlands and in the US.