Background: Caregivers of people diagnosed with primary brain tumour experience high unmet needs. A larger number of unmet needs is associated with increased distress, anxiety, and depression, as well as lower confidence and preparedness to care. Multiple measures to capture caregiver unmet needs have been developed, but none are sufficiently brief for clinical use (5-20 items) nor designed specifically for caregivers looking after people with primary brain tumour. As part of the Brain cancer Rehabilitation, Assessment, Interventions for survivorship Need (BRAINs) program, we plan to screen for caregiver unmet needs across the brain cancer trajectory in an electronic screening portal.
Aim: To develop a brief screening tool to identify primary brain tumour caregivers with unmet needs to facilitate assessment.
Methods: Secondary analysis of baseline data from 188 caregivers of people with high-grade glioma from a randomised control trial (Care-IS study) was performed using responses to the Supportive Care Needs Survey – Partners & Caregivers (SCNS-P&C). First, using single items, we conducted exploratory factor analysis, frequency analysis, and simple linear regressions. Second, using two- and three-item combinations we conducted simple linear regressions and ROC analysis. Items performing best in these analyses (demonstrating high factor loadings, frequencies, coefficients of determination, and area under the curve) were selected as final screening items. Supplementary analysis investigating proportion of individuals missed by the screening items was performed.
Results: A two-domain structure was found, and six screening questions identified. Three items fell under domain one: “The impact of caring for the person with cancer has had on your working life, or usual activities”; “Understanding the experience of the person with cancer”; and, “Getting emotional support for yourself”. The other three items fell under domain two: “Accessing information relevant to your needs as a carer/partner”; “Accessing information on what the person with cancer’s physical needs are likely to be”; and, “Having opportunities to discuss your concerns with the doctors”. Supplementary analysis indicated that these six screening items failed to identify 7.4% of the sample with unmet needs when the full scale was used.
Conclusion: The low proportion of individuals missed by the proposed six item scale demonstrate the strong clinical potential for this screening tool. By regularly screening for unmet needs, caregivers can be triaged for timely and suitable supportive care interventions.