Abstract
Background
Despite therapy advances for patients with liver disease, readmission rates in patients with decompensated cirrhosis remain high. Studies have evaluated clinical risk factors influencing risk of readmission, but limited data exists on patient related outcome measures. Moreover, scant data exists on the impact of decompensated cirrhosis on caregivers.
Aims
We sought to evaluate and understand the patient experience of hospitalization and post-discharge, including factors perceived to be important by patients and their caregivers.
Methods
We identified patients who were admitted to the Ottawa Hospital for decompensated cirrhosis (October 2018-February 2019). Patients were consented to participate at the time of admission, or at the first clinic appointment with Hepatology post-discharge. Participants were administered a set of validated questionnaires exploring their experiences during their admission, and post-discharge. Questionnaires included the SF-36, Multidimensional Caregiver Strain Index, Social Support Scale, and a sociodemographic sheet. Patients were also asked to identify a caregiver, and if consented, a survey was also administered to their caregiver. Descriptive statistics were performed.
Results
A total of 20 patients and 10 caregivers were captured in the study. Of these, 72% (n=13) self-identified being disabled, retired, or unemployed and not currently looking for work, while 16% (n=3) were working full time. Income wise, 42% (n=8) of patients made between 20–50 thousand dollars, 42% (n=8) made more than fifty thousand, and n=2 had an income less than twenty thousand. With regards to education, 42% (n=8) had some college or technical school training, and 26% (n=5) were college graduates. All patients lived in stable housing, with the majority living alone (n=12, 63%). When assessing health-related quality of life, patients’ general health perception was low (34%), with significant impairment noted in physical role functioning (21%), and vitality (35%). Perceived social support was high, with 78% of patients noting they had a special person they could rely on in need, and someone they could share their feelings with. Our caregiver survey did not reveal any significant burnout trends. Caregivers expressed they were happy to care for their loved one (80%, n=8), and when asked whether they felt resentment or anger towards their spouse or family member, (80%, n=8) said never. Given the exploratory nature and small sample size of the study, we did not run statistical analyses.
Conclusions
Overall, our study revealed that patients with decompensated cirrhosis experience low health-related quality of life, however feel supported by their caregivers. Caregivers did not express significant burnout at first post-discharge visit. Larger studies and longitudinal data would be helpful to better characterize the patient experience in advanced cirrhosis.
Funding Agencies
The Ottawa Hospital Academic Medical Organization (TOHAMO) Quality & Patient Safety Grant
O03 A novel nurse-led early post-discharge clinic is associated with fewer readmissions and lower mortality following an index hospitalisation with decompensated cirrhosis
