THE WEIGHT OF HEPATIC ENCEPHALOPATHY: HEAVY AND SHARED
Although it presents with a spectrum of severity, even the presence of minimal hepatic encephalopathy (HE) impacts every aspect of a patient's life. HE disrupts one's sleep, driving, daily functioning, and earning potential and carries with it the burden of repeated hospitalizations and diminished survival (1–4). Unsurprisingly, these effects on the patient spill over and affect the quality of life (QoL), health, and functioning of one's caregivers (5). Measuring patient- and caregiver-reported outcomes in cirrhosis provides essential insights into the subjective impact of the disease (6). However, our understanding of contributors to the psychological burden of HE remains incomplete. Missing from the literature are the voices of those experiencing the debilitating consequences of HE. Fabrellas et al. extends our knowledge of the scale and scope of the burden of HE on patients and their caregivers with an important study that gives voice directly to those who are affected (7).
Using a mixed-methods study design, the authors enrolled 15 patients with a history of HE and their informal caregivers to complete validated QoL scales (Medical Outcomes Study Short Form 36 and, additionally for caregivers, the Zarit Burden Index). In all areas of the physical and mental components of the Medical Outcomes Study Short Form 36, both patients and their caregivers reported markedly lower health-related QoL scores compared with established norms. Caregiver burden was also exceedingly high (mean Zarit Burden Index 51). Semistructured interviews revealed high expressions of fear, anxiety, sorrow, and anger in nearly half of patients and in one-third of their caregivers. Even more alarming was the disclosure from most participants that the entity of HE was unknown to them before its actual occurrence. In summary, this informative data provide us with 3 major opportunities to improve the care we deliver to patients and their caregivers (Table 1).
IDENTIFYING AT-RISK PERSONS
Improving the burden of HE begins with proper identification of those at risk so that we can prepare patients and mitigate known precipitants. This starts with risk stratification, which includes the use of scores such as the Bilirubin–Albumin–Beta-Blocker–Statin score and screening for covert HE with tools such as the Animal Naming Test or EncephalApp Stroop (8,9). In addition, routine care for persons with cirrhosis should include frequent review of medications and efforts to minimize risky medications, such as benzodiazepines, opiates, and proton pump inhibitors (10,11). Finally, nutritional interventions to achieve protein targets (e.g., 1 g/kg actual bodyweight) are recommended to reduce the risk of sarcopenia and forestall HE episodes (12).
Secondary prophylaxis of HE relies on both pharmacologic and nonpharmacologic strategies. Lactulose, rifaximin, and optimized nutrition all reduce the risk of recurrent HE and improve patient-reported outcomes (13,14). However, as highlighted by Fabrellas et al., treatment must also address the psychological burden experienced by patients and their caregivers. Clinicians should inquire about, validate, and address the worries and fears experienced by their patients. When indicated, clinicians should then refer patients and their caregivers for counseling and consider interventions, such as mindfulness training, that improve mood, sleep, and caregiver burden (15). Additional, scalable interventions are also needed. We, for example, have launched a randomized controlled trial to assess the impact of resilience training and emotional disclosure through keeping a diary on caregiver burden (16).
Fabrellas et al. also found that patients and caregivers felt totally unprepared during the first occurrence of HE because of minimal or no awareness of HE being a complication that they were at risk of experiencing. Although striking, this is consistent with other studies. When assessed, patient’s knowledge regarding the natural progression of cirrhosis is consistently low; however, improvement can be achieved through structured patient education (17,18). Similarly, there is a need for education of frontline providers to improve the recognition of covert encephalopathy in order to promote both timely referral and treatment.
The time is now to recognize the deleterious effects of HE on patient- and caregiver-reported health-related QoL. After identification, we must implement treatment strategies that not only address the disease but also reduce the burden placed on the household.
CONFLICTS OF INTEREST
Guarantor of the article: Elliot B. Tapper, MD.
Specific author contributions: J.L.: concept, analysis, and writing. E.B.T.: concept, analysis, and revision.
Financial support: Jeremy Louissaint T32DK062708. Elliot B. Tapper receives funding from the National Institutes of Health through the NIDDK (1K23DK117055-01A1).
Potential competing interests: E.B.T. has served as a consultant to Norvartis, Kaleido, and Allergan; has served on advisory boards for Mallinckrodt, Rebiotix, and Bausch Health; and has received unrestricted research grants from Gilead.
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