Hepatic encephalopathy (HE) is common in patients with cirrhosis and has significant associated morbidity and mortality. But it’s not the patients alone who bear the brunt of the disease, the disruption of the daily activities of the patient also affects the quality of life (QoL) and health of the caregivers. In this editorial published in May 2020 issue of the journal Clinical and Translational Gastroenterology, Louissaint J and Tapper EB have deliberated on a study by Fabrellas et al, which describes the psychological impact of HE on both patients and their family members as informal caregivers.

Fifteen patients with history of HE and their informal caregivers were selected for this study. Medical Outcomes Study Short Form 36 was used to measure the health-related QoL (HRQoL). Both the patients and their caregivers had significantly diminished health-related QoL as evident by the low scores. The caregivers were additionally asked to undertake the Zarit Burden Index to assess the burden. High scores on this scale were indicative of the extreme caregiver burden. Almost half of the patients and one-third of their caregivers reported heightened feelings of anxiety, anger, fear and sadness. 

The authors have also discussed three ways to reduce the psychological burden of the disease on patients as well as their caregivers. This begins with the identification of at-risk patients by risk stratification scores and screening patients for covert HE along with a periodic review of medications to identify those known to precipitate HE such as benzodiazepines, proton pump inhibitors (PPIs) and nutritional support to attain protein targets. The second is reducing risk through pharmacologic and nonpharmacologic approaches. The treating physician must assess worries and fears of patients and tackle them appropriately, if any. This can be done by counselling and educating patients and caregivers about mindfulness exercises. 

Fabrellas et al also point out that many patients were unaware of HE as a complication of their condition till they had actually experienced it. Therefore, educating patients about the natural history of cirrhosis can improve the emotional burden. Treatment of HE therefore should take into consideration not only the medical aspects of the disease but also its psychological impact on both patients and caregivers.

Louissaint J, Tapper EB. Clin Transl Gastroenterol. 2020 May;11(5):e00181.