A100 END-STAGE CIRRHOSIS: EXPLORING THE PERSPECTIVES OF PATIENTS AND THEIR CAREGIVERS
Bibliographic record
Abstract
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
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.003 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.004 | 0.001 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.000 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".