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Abstract Details
Patient-reported outcomes in HCC: A scoping review by the Practice Metrics Committee of the American Association for the Study of Liver Diseases
Hepatology. 2022 Jul;76(1):251-274. doi: 10.1002/hep.32313. Epub 2022 Jan 22.
1Division of Gastroenterology and Hepatology, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA.
2Section of Gastroenterology, Corporal Michael J. Crescenz VA Medical Center, Philadelphia, Pennsylvania, USA.
3Leonard Davis Institute of Health Economics, Philadelphia, Pennsylvania, USA.
4Division of Gastroenterology and Hepatology, University of Michigan, Ann Arbor, Michigan, USA.
5Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Children's Hospital at Montefiore-Albert Einstein College of Medicine, Bronx, New York, USA.
6Hepatology, Baylor All Saints, Fort Worth, Texas, USA.
7Division of Digestive and Liver Diseases, Cedars-Sinai Medical Center, Los Angeles, California, USA.
8Department of Transplantation, California Pacific Medical Center, San Francisco, California, USA.
9Section of Gastroenterology and Hepatology, Department of Medicine, Baylor College of Medicine, Houston, Texas, USA.
10Center for Innovations in Quality, Effectiveness and Safety, Michael E. DeBakey Veterans Affairs Medical Center, Houston, Texas, USA.
11Section of Health Services Research, Department of Medicine, Baylor College of Medicine, Houston, Texas, USA.
12Division of Gastroenterology and Transplantation Institute, Loma Linda University, Loma Linda, California, USA.
13Hepatology, Baylor University Medical Center, Dallas, Texas, USA.
14Indiana University School of Medicine, Indianapolis, Indiana, USA.
15Division of Gastroenterology, Hepatology and Nutrition, University of Minnesota, Minneapolis, Minnesota, USA.
16California Pacific Medical Center, San Francisco, California, USA.
17VA Long Beach Healthcare System, Long Beach, California, USA.
18Gastroenterology Section, VA Ann Arbor Healthcare System, Ann Arbor, Michigan, USA.
Abstract
Background and aims: HCC is a leading cause of mortality in patients with advanced liver disease and is associated with significant morbidity. Despite multiple available curative and palliative treatments, there is a lack of systematic evaluation of patient-reported outcomes (PROs) in HCC.
Approach and results: The American Association for the Study of Liver Diseases Practice Metrics Committee conducted a scoping review of PROs in HCC from 1990 to 2021 to (1) synthesize the evidence on PROs in HCC and (2) provide recommendations on incorporating PROs into clinical practice and quality improvement efforts. A total of 63 studies met inclusion criteria investigating factors associated with PROs, the relationship between PROs and survival, and associations between HCC therapy and PROs. Studies recruited heterogeneous populations, and most were cross-sectional. Poor PROs were associated with worse prognosis after adjusting for clinical factors and with more advanced disease stage, although some studies showed better PROs in patients with HCC compared to those with cirrhosis. Locoregional and systemic therapies were generally associated with a high symptom burden; however, some studies showed lower symptom burden for transarterial radiotherapy and radiation therapy. Qualitative studies identified additional symptoms not routinely assessed with structured questionnaires. Gaps in the literature include lack of integration of PROs into clinical care to guide HCC treatment decisions, unknown impact of HCC on caregivers, and the effect of palliative or supportive care quality of life and health outcomes.
Conclusion: Evidence supports assessment of PROs in HCC; however, clinical implementation and the impact of PRO measurement on quality of care and longitudinal outcomes need future investigation.