ABSTRACT:

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.

Chen, J., J. M. Shaw, H. M. Dhillon, G. K. B. Halkett, E. McDougall, A. K. Nowak, and R. Campbell. 2025. Development of a brief screening measure of unmet supportive care needs (SCNS-P&C-6) in caregivers of people with high-grade glioma. Journal of Patient Reported Outcomes 9 (1)

ABSTRACT:

Background
This study aimed to describe the out-of-pocket costs incurred by patients diagnosed with high-grade glioma (HGG) and their carers in the standard care arm of the Care-IS trial in the 6 to 8 months following their diagnosis.

Methods
Carers completed monthly cost surveys detailing the out-of-pocket costs incurred by patients and carers over a 6-month period. Seventy carers reported out-of-pocket costs at baseline (within 2 months following patient diagnosis), and a maximum of 50% of participants reported costs in any subsequent month. Costs were adjusted to 2023 AUD and reported as medians with an interquartile range. Demographic factors were assessed to determine if any were significantly associated with being in the first or fourth quartile of total out-of-pocket costs at baseline.

Results
Median monthly costs for patient-carer dyads were highest at baseline ($535[IQR:$170–$930]), and 2 months post-recruitment ($314 [IQR:$150–$772]). The largest contributors to patient-carer costs were patient health service use and patient medications. Patient and carer health service use and medication costs varied over time. The median health service use and medication out-of-pocket costs for patients and carers were mostly below $100 per month; however, there was a large variance in the upper 75th percentile for these cost categories. No factors were significantly associated with higher baseline out-of-pocket costs.

Conclusions
A HGG diagnosis has a significant and sustained financial impact on people who are diagnosed and their carers. Patients experience significant additional costs relating to their diagnosis and travel to receive care, and their carers also continue to experience sustained costs whilst managing the additional tasks associated with informal caregiving.

Newton, J. C., G. K. B. Halkett, C. Wright, M. O.'Connor, A. K. Nowak, and R. Moorin. 2025. Out-of-pocket costs for patients diagnosed with high-grade glioma and their carers." Neuro Oncology Practice 12 (2): 231-245.