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Boele, F. W.

Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: “it’s all the aftermath, and then you’re forgotten about”

Background: Teenage and young adult (TYA) survivors of childhood brain tumours and their family caregivers can experience many late effects of treatment that can hamper the transition to living independent lives. Yet, their long-term supportive care needs are largely unknown. We investigated the supportive care needs of TYA survivors and their caregivers and explored the role and perceived use of support.

Fri, 08/19/2022 - 20:38

Healthcare utilization and productivity loss in glioma patients and family caregivers: the impact of treatable psychological symptoms

Background: Gliomas are associated with significant healthcare burden, yet reports of costs are scarce. While many costs are unavoidable there may be treatable symptoms contributing to higher costs. We describe healthcare and societal costs in glioma patients at high risk for depression and their family caregivers, and explore relationships between costs and treatable symptoms. Methods: Data from a multicenter randomized trial on effects of internet-based therapy for depressive symptoms were used (NTR3223).

Tue, 07/07/2020 - 16:12

Psychometric Evaluation of the Caregiver Needs Screen in Neuro-Oncology Family Caregivers

BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review.

Mon, 09/30/2019 - 13:19