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. 2022 Jul;76(1):251-274.
doi: 10.1002/hep.32313. Epub 2022 Jan 22.

Patient-reported outcomes in HCC: A scoping review by the Practice Metrics Committee of the American Association for the Study of Liver Diseases

Marina Serper  1   2   3 , Neehar D Parikh  4 , Grace Thiele  1 , Nadia Ovchinsky  5 , Shivang Mehta  6 , Alexander Kuo  7 , Chanda Ho  8 , Fasiha Kanwal  9   10   11 , Michael Volk  12 , Sumeet K Asrani  13 , Marwan S Ghabril  14 , John R Lake  15 , Raphael B Merriman  16 , Timothy R Morgan  17 , Elliot B Tapper  4   18
Affiliations

Patient-reported outcomes in HCC: A scoping review by the Practice Metrics Committee of the American Association for the Study of Liver Diseases

Marina Serper et al. Hepatology. 2022 Jul.

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.

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Conflict of interest statement

CONFLICTS OF INTEREST

Dr. Serper consults for Gilead. Dr. Parikh advises Genentech, Bayer, and Eisai. Dr. Volk consults and is on the speakers’ bureau for Bausch. Dr. Lake consults for HepQuant and Micromatrix. He received grants from Cymabay. Dr. Morgan received grants from Genfit, AbbVie, and Gilead.

Figures

FIGURE 1
FIGURE 1
Most commonly used validated PRO questionnaires in HCC. FACIT, Functional Assessment of Chronic Illness Therapy; FACT-G, FACT–General; QLQ-HCC18, HCC-specific domain of QLQ
FIGURE 2
FIGURE 2
Dominant themes elicited in qualitative studies
FIGURE 3
FIGURE 3
Changes in HRQOL over time in patients with HCC undergoing various treatment methods compared with baseline as Functional Assessment of Chronic Illness Therapy. FACT-G, FACT–General; HR, hepatic resection; Y90, 90-yttrium
FIGURE 4
FIGURE 4
Changes in HRQOL over time in patients with HCC undergoing various treatment methods compared with baseline with (A) SF-12 or SF-36 and (B) EORTC. Ate, atezolizumab; Bev, bevacizumab; HR, hepatic resection; Len, lenvatinib; LT, liver transplantation
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References

    1. Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin. 2018;68:394–424. - PubMed
    1. Li L, Yeo W. Value of quality of life analysis in liver cancer: a clinician’s perspective. World J Hepatol. 2017;9:867–83. - PMC - PubMed
    1. Mercieca-Bebber R, King MT, Calvert MJ, Stockler MR, Friedlander M. The importance of patient-reported outcomes in clinical trials and strategies for future optimization. Patient Related Outcome Measures. 2018;9:353. - PMC - PubMed
    1. Kanwal F, Tapper EB, Ho C, Asrani SK, Ovchinsky N, Poterucha J, et al. Development of quality measures in cirrhosis by the Practice Metrics Committee of the American Association for the Study of Liver Diseases. Hepatology. 2019;69:1787–97. - PubMed
    1. Tapper EB, Kanwal F, Asrani SK, Ho C, Ovchinsky N, Poterucha J, et al. Patient reported outcomes in cirrhosis: a scoping review of the literature. Hepatology. 2018;67:2375–83. - PubMed

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