The Patient’s Perspective in Cirrhosis: Unmet Supportive Care Needs Differ by Disease Severity, Etiology, and Age

摘要

Patients with cirrhosis have significant physical, psychological, and practical needs. We documented patients’ perceived need for support with these issues and the differences with increasing liver disease severity, etiology, and age. Using the supportive needs assessment tool for cirrhosis (SNAC), we examined the rate of moderate‐to‐high unmet needs (Poisson regression; incidence rate ratio?[IRR]) and the correlation between needs and sociodemographic/clinical characteristics (multivariable linear regression) in 458 Australians adults with cirrhosis. Primary liver disease etiology was alcohol in 37.6% of patients, chronic viral hepatitis C in 25.5%, and nonalcoholic fatty liver disease (NAFLD)/nonalcoholic steatohepatitis (NASH) in 23.8%. A total of 64.6% of patients had Child‐Pugh class A cirrhosis. Most patients (81.2%) had at least one moderate‐to‐high unmet need item; more than 25% reported a moderate‐to‐high need for help with “lack of energy,” “sleep poorly,” “feel unwell,” “worry about … illness getting worse (liver cancer),” “have anxiety/stress,” and “difficulty with daily tasks.” Adjusting for key sociodemographic/clinical factors, patients with Child‐Pugh C had a greater rate of “practical and physical needs” (vs. Child‐Pugh A; IRR?=?2.94, 95% confidence interval [CI] 2.57‐3.37), patients with NAFLD/NASH had a greater rate of needs with “lifestyle changes” (vs. alcohol; IRR?=?1.81, 95% CI 1.18‐2.77) and “practical and physical needs” (IRR?=?1.43, 95% CI 1.23‐1.65), and patients aged ≥65?years had fewer needs overall (vs. 18‐64?years; IRR?=?0.70, 95% CI 0.64‐0.76). Higher overall SNAC scores were associated with Child‐Pugh B and C (both P ?0.001), NAFLD/NASH ( P =?0.028), patients with “no partner, do not live alone” ( P =?0.004), unemployment ( P =?0.039), ascites ( P =?0.022), and dyslipidemia ( P =?0.024) compared with their counterparts. Conclusion: Very high levels of needs were reported by patients with cirrhosis. This information is important to tailor patient‐centered care and facilitate timely interventions or referral to support services.