Purpose: Informal caregivers of people with high grade glioma (HGG) often have high levels of unmet support needs. Routine screening for unmet needs can facilitate appropriate and timely access to supportive care. We aimed to develop a brief screening tool for HGG caregiver unmet needs, based on the Supportive Care Needs Survey-Partners & Caregivers (SCNS-P&C).
Methods: Secondary analysis was performed on responses to the SCNS-P&C from 188 HGG caregivers, who participated in the Care-IS trial. SCNS-P&C items were assessed against four criteria: factor loadings; prevalence; variation in domain score; diagnostic accuracy. Supplementary analysis was conducted at two timepoints (T1 & T2) on the final selected items to identify caregivers indicating no needs on the screening items but reported a need on the original SCNS-P&C, suggesting they would be "missed" by the screening items.
Results: Six items performed best against psychometric criteria, capturing two domains: Cancer impact needs and Information and communication needs. Supplementary analysis showed screening items failed to identify only 7.4% (14/188) of caregivers with other unmet needs at T1 and 11.4% (18/158) at T2. Of those missed at T1, only four were missed again at T2.
Conclusions: We identified six-items for inclusion in a brief screening tool, the SCNS-P&C-6, demonstrating good sensitivity in detecting unmet needs of caregivers of people with HGG. Use of this tool in clinical practice has the potential to improve access to care and the cancer experience for both the caregiver and person with brain tumor.
Keywords: Brain cancer; Caregiver; Screening; Supportive care; Unmet needs.
Family members or friends who look after people with brain tumors often have supportive care needs that are inconsistently identified and not well addressed by health systems. This study sought to create a short screening measure that can be used in clinical practice settings to identify people in these caregiving roles who need additional support. We identified six questions that can be administered as a short screening questionnaire that are likely to identify most people caring for people with brain tumor with unmet supportive care needs. This screening tool has potential to be used in clinical practice to identify caregivers requiring additional support, triggering provision of targeted resources and support services.
© 2024. The Author(s).