Caregiver time burden in newly diagnosed glioblastoma: A prospective analysis.

Abstract

242 Background: Caregiver (CG) burden is particularly high in glioblastoma (GBM) because neurologic deficits lead to cognitive dysfunction and physical dependence. The amount of time that CGs devote to GBM pts is not well described. The extent to which time burden impacts CG quality of life and perceived burden is unknown. Methods: We performed an IRB-approved prospective analysis of 38 CGs of pts with newly diagnosed GBM enrolled over 8 mo. at a single academic institution. CGs were defined as individuals responsible for any aspect of pt support, and multiple CGs were allowed for each pt. CGs completed the Caregiver Quality of Life in Cancer (CQOLC) survey plus questions about CG role and time dedicated to pt care within 2 mo. of initial neuro-oncology visit. We described time burden and correlated this with 3 CQOLC questions addressing CG stress, emotional well-being, and perceived burden. Results: 30/38 CGs completed the surveys. The 30 CGs (21 female) included 16 spouses, 8 children, 3 parents, 2 siblings and 1 friend. 21 were primary CGs (13 female). 21 CG spent > 40 hrs/wk with pt, 10 spent > 40 hrs/wk on direct pt care, and 7 spent > 40 work hrs/wk caring for the pt. Table 1 illustrates CG time burden stratified by primary vs non-primary CG. CG time spent on direct pt care positively correlated with CGs feeling overwhelmed by their responsibilities as assessed by the CQOLC (p < 0.0001, spearman coefficient 0.66). Amount of work hrs spent on pt care also correlated with the CG feeling overwhelmed. (p = 0.0003, spearman coefficient 0.61). Conclusions: CG time burden in GBM is substantial even at the time of diagnosis, and is most notable in primary CGs. CG time burden correlates with signs of emotional distress as measured by the CQOLC. Assessing time burden for individual CGs may help identify early risk for distress and develop interventions to improve CG quality of life. [Table: see text]