The teleological background of this study dwells in our leveraging the once-in-a-lifetime combination of our longer-term focus on patient-reported outcomes. On the one hand, we combined it with an unprecedented psychosocial test tube milieu inflicted by the lockdown. Before the spread of the SARS-CoV-2 virus, we have been collecting data on QOL (in cirrhosis registry). It is important to note that 1) the RH7 registry was founded in 2014 as our response to cirrhosis becoming the number-one cause of death in young adults in Slovakia and 2) the QoL became the core variable in RH7 only in subsequent years; also that 3) of the two alternative tools assessing QOL (generic, and disease specific) we opted for the former. EuroQOL has higher sensitivity and specificity between the cirrhosis-specific instruments. It has been developed by Younoussi [26] reportedly having a cumulative advantage of reproducibility, validity, validity in Europeans, validity in liver diseases, comparability with other diseases and brevity (30–32).
After an initial shock from the pandemic, we found ourselves cut from the majority of outpatients including patients with cirrhosis whom we used to see regularly after discharge. Our RH7 registry included hospitalized patients mainly with decompensated cirrhosis and a poor prognosis. We began to conceive a way to actively contact them in order to learn how they were and help them in case of need. At this stage, we decided to elevate our effort to a formal study using the EuroQOL
In general, cirrhosis is associated with a low quality of life [13]. It is chronic and progressive in nature leading to deterioration in mental and physical functioning while significantly impacting on the quality of life. Also, a disease driven decrease in the quality of life can be further multiplied by other individual psychological and psychosocial factors. It is increasingly recognized as an important outcome of cirrhosis. The use of a quality-of-life questionnaire can identify high-risk patients with poor quality of life and worse prognosis. Understanding the importance of quality of life is an important factor in providing high-quality management [12]. Our main finding of an improvement in the overall quality of life during the lockdown was a great surprise. There are several generic explanations for these findings. First, at baseline we meet our patients in a very dismal physical condition with ensuring quality of life at its nadir [30]. Patients with decompensated cirrhosis are usually referred to our tertiary liver unit with a liver transplant program when first and second-line therapeutic options had failed. This may not only unabated physical suffering from decompensating events (encephalopathy, ascites, infections, frailty, bleeding, etc), but also a mental suffering. Several factors affecting QoL in patients with cirrhosis have been identified. In a study by Parkash et al. [31] low quality of life was associated with a level of hemoglobin, serum albumin, and previous decompensation of liver cirrhosis. In a study by Solà et al. [32] hyponatremia and edema were main risk factors associated with a poorer quality of life. A study by Les et al. [33] identified ascites, hypoalbuminemia, minimal liver encephalopathy, and anemia as potential factors of poor quality of life.
In our study, some factors may have led to an improvement in the quality of life during lockdown. Firstly, the impact of treatment and recovery from the baseline complication. In addition, every patient was educated about the need for optimal nutrition and benefits of exercise that could lead to improved QoL. A positive change in the functional capacity of muscles could also have an effect on the daily activities. Second, a temporary increase in anxiety and depression during the first hospitalization [34] was likely followed by a gradual decrease related to the recovery from acute complications. In addition, in some patients the inner reconciliation with the diagnosis could have led to acceptance, regained hope and self-empowerment. Thus, both above-mentioned physical and psychological mechanisms would understandably be improved after discharge (33). In addition, several other unmeasured factors could have contributed to our findings: a higher care and interest from family members during the pandemic, a significant decrease in daily stressors, such as going to work or having the responsibility for administrative tasks.
The impact of social isolation on quality of life is enormous and significant [35, 36]. On the other hand, patients with liver cirrhosis may have had some degree of social isolation before the pandemic. An increased incidence of anxiety and depression during the first hospitalization may be related to anxiety about the disease [34], and a gradual decrease may be related to alleviation of the disease. Stress during the first hospitalization, and fear of an unknown illness can significantly affect the overall quality of life during the first hospitalization and can be an explanation compared to the quality of life during a pandemic. The diagnosis of a serious disease such as liver cirrhosis can cause a negative reaction in patients, which will significantly affect the quality of life of patients; however, reconciliation with diagnosis can lead to greater resistance in some patients. At admission to our liver unit, patients might be at the peak of their psychological suffering as well - such as fear of death, uncertainty if there are any further therapeutic options left, would she or he be a suitable candidate for a third-line therapeutic options such as liver transplantation. Both of the above-mentioned (physical and psychological) causes of decreased quality of life would be understandably improved after discharge from our unit by an improvement in physical state, by psychological counseling, as well as by a regained hope (33). Higher care and interest from family members during the pandemic could also help improve quality of life. The disappearance of some stressors, such as going to work during a pandemic, may have contributed to a paradoxical improvement in the quality of patients.
Finally, there is yet another possible explanation for the improved QOL during lockdown: a shift of the psychological focus from a purely personal domain (my disease, my pain, my uncertainty, my mortal being, etc.), to the higher-order domains such as suffering of others, fate of the whole society or the world, future of the globe, how can I be of help to others [37–39]. These higher-order preoccupations of patients could have overshadowed their personal suffering to the extent, which we have been able to detect as an improvement in QOL. Domains significantly improved during lockdown compared to hospital stay (self-care, usual activities and anxiety / depression) could be similar to concepts previously described in the classical literature in Aldous Huxley’s Psychological causes of war and Paolo Coelho’s Veronika Decides to Die [40]. They have contemplated on the reasons for (real or fictional) reduction in suicide rates during the wartime and cured psychiatric illnesses against the immediate threat of death. At this point, with some degree of overstatement, we can safely hypothesize that the quality of life of our patients improved as a direct psychological consequence of the pandemic.
Another factor associated with a lower quality of life in patients with liver cirrhosis is malnutrition [41]. Malnutrition is associated with an increased risk of mortality, hospitalizations, portal hypertension, and infectious complications [42, 43]. In our study, patients were informed about the need for a healthy lifestyle that could affect their quality of life during a pandemic. Sarcopenia is a significant factor adversely affecting the quality of life in patients with liver cirrhosis [44–46]. During the pandemic, overall physical activity decreased, which may have led to a higher prevalence of sarcopenia. However, compared to the first hospitalization, physical activity was higher, likely contributing to improved quality of life in cirrhosis. Sarcopenia is also closely related to the appearance of frailty. Nishikawa et al. [47] studied the relationship between frailty and quality of life in patients with cirrhosis. All aspects of SF-36 were associated with frailty syndrome (p < 0.0001). A change in the functional capacity of muscles had a negative effect on the daily activities of patients. Da Silva Vieira et al. [48] tested functional capacity in patients with cirrhosis and found a correlation between quality of life and the result of a 6-minute walk test.
How can we test the hypotheses generated by our results? First, we can systematically start repeating measurements of the QOL at discharge and further on to see for trends. Second, we can ask our patients for reasons for their perceived improvements in the QoL during the lockdown while being aware of inherent limitations both of these attitudes have.
Our study was associated with several limitations. Twenty-two patients died during the study and the inability to evaluate the data may have affected the results. The study was monocentric with a focus on the central part of Slovakia. The study was carried out in Slovak patients; to objectively assess the quality of life with liver cirrhosis during a pandemic, it would be necessary to include more patients from different centers and countries.