Caregiver burden by treatment and clinical characteristics of patients with glioblastoma

Trang H Au,Alexandre H Watanabe,Adam L Cohen,Cornelia M Ulrich,D Ryan Ormond,Katherine B Peters,Alexander Marshall,Arnab Chakravarti,Maija Reblin,Hillevi Bauer,David D Stenehjem ,Connor Willis,Jennie Taylor ,Phioanh L Nghiemphu ,Howard Colman,Beata Korytowsky,Jyothi U Menon ,Ma José ,Nicole E Willmarth ,Prianka Singh,Diana I Brixner

doi:10.1007/s00520-021-06514-0

Abstract

BackgroundGlioblastoma is an incurable disease with a poor prognosis. For caregivers of people with glioblastoma, the burden of care can be high. Patients often present with different clinical characteristics, which may impact caregiver burden in different ways. This study aimed to evaluate associations between patient clinical characteristics and caregiver burden/quality of life (QoL).MethodsCaregiver–patient dyads were enrolled at 7 academic cancer centers in the United States. Eligible caregiver participants were self-reported as the primary caregiver of an adult living with glioblastoma and completed a caregiver burden survey. Eligible patients were age ≥ 18 years at glioblastoma diagnosis and alive when their respective caregiver entered the study, with the presence of cognitive dysfunction confirmed by the caregiver. Data were analyzed with descriptive statistics and multivariable analyses.ResultsThe final cohort included 167 dyads. Poor patient performance status resulted in patient difficulty with mental tasks, more caregiving tasks, and increased caregiving time. Language problems were reported in patients with left-sided lesions. Patient confusion was negatively associated with all caregiver domains: emotional health, social health, general health, ability to work, confidence in finances, and overall QoL. Better caregiver QoL was observed in patients with frontal lobe lesions versus non-frontal lobe lesions.ConclusionThis study reinforced that patient performance status is a critical clinical factor that significantly affects caregiver burden, caregiving tasks, and caregiver time. Additionally, patient confusion affects multiple facets of caregiver burden/QoL. These results could be used to support guided intervention for caregiver support, customized to the patient experience.

Highlights

Glioblastoma is the most aggressive central nervous system malignancy [36]
Patients were stratified by tumor methylguanine-DNA methyltransferase promoter (MGMT) status as it is a known prognostic factor that is prevalent in approximately 50% of people with glioblastoma
In step 2, a backward elimination process was conducted for all variables that showed an unadjusted association with caregiver burden in step 1

Summary

Introduction

Glioblastoma is the most aggressive central nervous system malignancy [36]. The disease is associated with a median overall survival of 15 months and a 5-year survival rate of < 5% [36]. Cognitive dysfunction may be present at the time of glioblastoma diagnosis and generally worsens over time due to disease sequelae and/or treatment toxicity [17]. This study aimed to evaluate associations between patient clinical characteristics and caregiver burden/ quality of life (QoL). Eligible patients were age ≥ 18 years at glioblastoma diagnosis and alive when their respective caregiver entered the study, with the presence of cognitive dysfunction confirmed by the caregiver. Conclusion This study reinforced that patient performance status is a critical clinical factor that significantly affects caregiver burden, caregiving tasks, and caregiver time. Patient confusion affects multiple facets of caregiver burden/ QoL. These results could be used to support guided intervention for caregiver support, customized to the patient experience

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Discussion

Conclusion