Approaches to Assessing Burden in Caregivers of Patients with Cirrhosis

Abstract

Background and Aims: Being a caregiver for a patient with chronic liver disease (CLD) can be burdensome mentally, emotionally financially, and physically. The aim of this study was to systemically review the available tools and propose tools that can comprehensively evaluate caregiver burden for individuals caring for patients with CLD. Methods: We searched the PubMed database for all studies on the impact of patients with CLD on caregiver burden without timeframe restriction. Eligible studies included cohort studies, review studies, or cross-sectional studies. The number of patients and caregivers was isolated from each paper. Studies in the same categories were isolated and statistically compared. Results: A total of 13 studies meeting our inclusion criteria as stated in the methods sections were included. In total, 2528 caregivers were taking care of 2003 patients with CLD. Women made up the majority of caregivers at 78.2%, 95.7% of whom identified as the patient's spouse. Caregiver strain index is one of the most comprehensive tools; however, the questions are very general and do not fully elucidate financial strain. Beck depression and anxiety were correlated (p=0.0001), and both depression and anxiety were correlated with perceived caregiver burden (PCB) and Zarit Burden Interview (ZBI) (p=0.002). Depression scale correlated with Interpersonal Support Evaluation-Short Form, and Model for End-Stage Liver Disease score correlated with ZBI and PCB (total and in most domains; p=0.001). Patient's poorer cognitive performance correlated with higher ZBI and PCB (employed patients had higher cognitive performance and lower ZBI and PCB). Conclusions: Caregiver burden remains poorly understood due to the lack of uniformity in the assessment tools used to evaluate caregiver burden. None of the tools used to evaluate caregiver burden are comprehensive; however, most tools correlate statistically in the ability to identify caregiver burden. A comprehensive tool is lacking for identifying caregiver burden in patients with CLD.

Frailty Does Not Impact Caregiver Burden in Patients with Cirrhosis

“…We did not find an association between frailty and caregiver burden, which is divergent from previous work in a community-dwelling geriatric population, which showed that frailty, defined by FFI ≥ 3, was associated with caregiver burden, measured by ZBI-12 [35]. One might expect that frailty is associated with higher caregiver burden, given the likely increased demands on the informal caregiver, but the ZBI-12 may not provide a complete assessment of caregiver burden as it does not assess other domains, such as the impact of financial stress on caregiver burden [36].…”

“…Perceived social support scores, based on ISEL-12, were fairly high; the median overall social support score was [31][32][33][34][35][36]. No association was found between patient gender, age, race/ethnicity, BMI, etiology of liver disease, decompensated disease, or MELD-Na and ISEL-12.…”

AASLD Practice Guidance: Palliative care and symptom‐based management in decompensated cirrhosis

“…[25][26][27][28][29] Caregivers of patients with DC report feeling unprepared to provide physical care, medication management, and transportation to their loved ones and often experience significant financial burdens . [23][24][25]27,[30][31][32] Importantly, the financial, social, and psychological burdens of cirrhosis experienced by caregivers can continue to impact caregivers after patients die.…”

“…[14] This figure also includes patients, families, and the multidisciplinary team as central to palliative care Aspe cts of Care under-recognized psychological, physical, and financial burdens. [22][23][24][25][26][27] Their symptoms include stress, anxiety, depression, insomnia, decreased health-related quality of life (HRQoL), and worse physical health. [23,[25][26][27] Psychological symptom burden among caregivers is associated with patients' alcohol use, encephalopathy, ascites, liver disease (LD) severity, repeated hospitalizations, prognostic uncertainty, and lack of information.…”

Caregiver Burden in Adult Solid Organ Transplantation

“…68,69 The 22-item version is the most widely used version, but shorter versions of the ZBI have also been developed, including a 6-item version that has good diagnostic utility. 69,70 The ZBI has been validated in caregivers of patients with heart failure, 71 cirrhosis, 72 and used in studies of caregivers of renal transplant recipients 73 and patients with interstitial lung disease. 74 Given the unique pressures faced by caregivers of transplant patients, development and validation of caregiver burden screening tools tailored to solid organ transplant populations are needed.…”