Patient‐reported outcomes in cirrhosis: A scoping review of the literature

Tapper, Elliot B.; Kanwal, Fasiha; Asrani, Sumeet K.; Ho, Chanda; Ovchinsky, Nadia; Poterucha, John J.; Flores, Avegail; Smith, Judith E.; Ankoma‐Sey, Victor; Luxon, Bruce A.; Volk, Michael L.

doi:10.1002/hep.29756

Cited by 78 publications

(101 citation statements)

References 23 publications

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“…The working group performed a scoping review of literature to identify a comprehensive set of patient‐reported outcomes for inclusion in the candidate measures. The results of this review are published elsewhere . The working group then reviewed the list of candidate outcome measure and identified additional outcomes that captured the clinical status of patients with cirrhosis.…”

Section: Methodsmentioning

confidence: 99%

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Development of Quality Measures in Cirrhosis by the Practice Metrics Committee of the American Association for the Study of Liver Diseases

et al. 2019

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Health care delivery is increasingly evaluated according to quality measures, yet such measures are underdeveloped for cirrhosis. The Practice Metrics Committee of the American Association for the Study of Liver Diseases was charged with developing explicit process‐based and outcome‐based measures for adults with cirrhosis. We identified candidate measures from comprehensive reviews of the literature and input from expert clinicians and patient focus groups. We conducted an 11‐member expert clinician panel and used a modified Delphi method to systematically identify a set of quality measures in cirrhosis. Among 119 candidate measures, 46 were identified as important measures to define the quality of cirrhosis care, including 26 process measures, 7 clinical outcome measures, and 13 patient‐reported outcome measures. The final process measures captured care processes for ascites (n = 5), varices/bleeding (n = 7), hepatic encephalopathy (n = 4), hepatocellular cancer (HCC) screening (n = 1), liver transplantation evaluation (n = 2), and other care (n = 7). Clinical outcome measures included survival, variceal bleeding and rebleeding, early‐stage HCC, liver‐related hospitalization, and rehospitalization within 7 and 30 days. Patient‐reported outcome measures covered physical symptoms, physical function, mental health, general function, cognition, social life, and satisfaction with care. The final list of patient‐reported outcomes was validated in 79 patients with cirrhosis from nine institutions in the United States. Conclusion: We developed an explicit set of evidence‐based quality measures for adult patients with cirrhosis. These measures are a tool for providers and institutions to evaluate their care quality, drive quality improvement, and deliver high‐value cirrhosis care. The quality measures are intended to be applicable in any clinical care setting in which care for patients with cirrhosis is provided.

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Section: Methodsmentioning

confidence: 99%

“…Most complications require hospitalization, and nearly 70% of patients are readmitted within 1 year, costing more than $20,000 per admission . The burden of cirrhosis is amplified by its dramatic impact on quality of life, resulting from multiple physical, psychological, cognitive, and social stressors …”

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confidence: 99%

Development of Quality Measures in Cirrhosis by the Practice Metrics Committee of the American Association for the Study of Liver Diseases

et al. 2019

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“…In addition to clinical decompensations, cirrhosis is also associated with poor patient‐reported outcomes (PROs) such as poor sleep and diminished health‐related quality of life (HRQOL). We recently reviewed the determinants of PROs in cirrhosis . Like others, we found that liver disease severity, particularly HE, is the principal driver of symptoms and poor HRQOL .…”

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confidence: 62%

“…The lived experience of cirrhosis can be very challenging for many patients, marked by debilitating symptoms and poor HRQOL . Poor PROs have been traditionally associated with cirrhosis complications such as ascites and overt HE .…”

Section: Discussionmentioning

confidence: 99%

Frailty, Psychoactive Medications, and Cognitive Dysfunction Are Associated With Poor Patient‐Reported Outcomes in Cirrhosis

et al. 2019

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Cirrhosis is associated with disabling symptoms and diminished health‐related quality of life (HRQOL). However, for patients with compensated disease, data are limited regarding associations with poor patient‐reported outcomes (PROs). We prospectively enrolled 300 patients with cirrhosis and portal hypertension without a history of hepatic encephalopathy (HE) and reviewed medical and pharmacy records. We characterized determinants of PROs using the 8‐item Short‐Form Health Survey (SF‐8) scale (0‐100) and sleep quality using the Pittsburgh Sleep Quality Index (PSQI; poor sleep >5). Disability and frailty measures were assessed using activities of daily living (ADLs), falls, hand‐grip, and chair‐stands. Cognitive function was measured using weighted‐lures from the Inhibitory Control Test (ICT). The median age of our cohort was 60 (interquartile range [IQR], 52‐66) years, 56.3% were male, and 70% Child class A. All patients had portal hypertension, 76% had varices, and 41% had a history of ascites (predominantly well controlled). The median Model for End‐Stage Liver Disease with Sodium (MELD‐Na) score was 9 (IQR, 7‐13). The overall median SF‐8 was 70 (IQR, 54‐86). Multivariate analysis showed that after adjusting for age, sex, education, and MELD‐Na, performance on chair‐stands (9.28 HRQOL points [95% confidence interval {CI}, 4.76‐13.8] per 10‐stands), ADL dependence (–6.06 [–10.8 to –1.36]), opiate use (–5.01 [–7.84 to –2.19]), benzodiazepine use (–3.50 [–6.58 to –0.42]), and ICT performance (–0.10 [–0.20 to 0.001] per weighted‐lure) were significantly associated with HRQOL. Among patients completing the ICT, poor HRQOL (score <50) was significantly associated with chair‐stands (odds ratio [OR] per 10‐stands, 0.24; 95% CI [0.11‐0.56]) and weighted lures (OR per weighted‐lure, 1.01 [1.00‐1.03]). Poor sleep quality was associated with opiate use (OR, 2.85 [1.11‐7.29]) and lures (OR per‐lure, 1.03 [1.00‐1.05]). Conclusion: Disability, chair‐stand performance, cognitive dysfunction, as well as psychoactive medication use are significantly associated with PROs in patients with clinically stable cirrhosis.

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“…These include muscle cramps, pruritus, sleep disturbances, and sexual dysfunction that can improve with symptomatic treatment(12). Patients may not disclose these concerns in a busy clinic visit, so they should be proactively assessed by providers.…”

Section: “Dos and Don’ts” In The Clinic (Table 2)mentioning

confidence: 99%