Burden of cirrhosis on older Americans and their families: analysis of the health and retirement study

Abstract

Prevalence of cirrhosis among older adults is expected to increase; therefore, we studied the health status, functional disability, and need for supportive care in a large national sample of individuals with cirrhosis. A prospective cohort of individuals with cirrhosis was identified within the longitudinal, nationally representative Health and Retirement Study. Cirrhosis cases were identified in linked Medicare data via ICD-9-CM (International Classification of Diseases, Ninth Revision, Clinical Modification) codes and compared to an age-matched cohort without cirrhosis. Two primary outcome domains were assessed: (1) patients' health status (perceived health status, comorbidities, health care utilization, and functional disability as determined by activities of daily living and instrumental activities of daily living), and (2) informal caregiving (hours of caregiving provided by a primary informal caregiver and associated cost). Adjusted negative binomial regression was used to assess the association between cirrhosis and functional disability. A total of 317 individuals with cirrhosis and 951 age-matched comparators were identified. Relative to the comparison group, individuals with cirrhosis had worse self-reported health status, more comorbidities, and used significantly more health care services (hospitalizations, nursing home stays, physician visits; P < 0.001 for all bivariable comparisons). They also had greater functional disability (P < 0.001 for activities of daily living and instrumental activities of daily living), despite adjustment for covariates such as comorbidities and health care utilization. Individuals with cirrhosis received more than twice the number of informal caregiving hours per week (P < 0.001), at an annual cost of US $4700 per person.

Conclusion: Older Americans with cirrhosis have high rates of disability, health care utilization, and need for informal caregiving. Improved care coordination and caregiver support is necessary to optimize management of this frail population.

Figure 1

Conceptual framework demonstrating how cirrhosis-related complications, underlying psychosocial/behavioral issues, and aging contribute to increased informal caregiver burden. Abbreviations: GI, gastrointestinal; HRS, hepatorenal syndrome; HPS, hepatopulmonary syndrome; COPD, chronic obstructive pulmonary disease; CHF, congestive heart failure; DM, diabetes mellitus; CVA, cerebrovascular accident; CAD, coronary artery disease; MI, myocardial infarction, ADL, activity of daily living; IADL, instrumental activity of daily living, IDU; intravenous drug use.