The burden of HCC is substantial. To address gaps in HCC care, the American Association for the Study of Liver Diseases (AASLD) Practice Metrics Committee (PMC) aimed to develop a standard set of process-based measures and patient-reported outcomes (PROs) along the HCC care continuum. We identified candidate process and outcomes measures for HCC care based on structured literature review. A 13-member panel with content expertise across the HCC care continuum evaluated candidate measures on importance and performance gap using a modified Delphi approach (two rounds of rating) to define the final set of measures. Candidate PROs based on a structured scoping review were ranked by 74 patients with HCC across 7 diverse institutions. Out of 135 measures, 29 measures made the final set. These covered surveillance (6 measures), diagnosis (6 measures), staging (2 measures), treatment (10 measures), and outcomes (5 measures). Examples included the use of ultrasound (± alpha-fetoprotein [AFP]) every 6 months, need for surveillance in high-risk populations, diagnostic testing for patients with a new AFP elevation, multidisciplinary liver tumor board (MLTB) review of Liver Imaging-Reporting and Data System 4 lesions, standard evaluation at diagnosis, treatment recommendations based on Barcelona Clinic Liver Cancer staging, MLTB discussion of treatment options, appropriate referral for evaluation of liver transplantation candidacy, and role of palliative therapy. PROs include those related to pain, anxiety, fear of treatment, and uncertainty about the best individual treatment and the future. The AASLD PMC has developed a set of explicit quality measures in HCC care to help bridge the gap between guideline recommendations and measurable processes and outcomes. Measurement and subsequent implementation of these metrics could be a central step in the improvement of patient care and outcomes in this high-risk population.

中文翻译：

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美国肝病研究协会实践指标委员会对 HCC 护理的质量测量

HCC 的负担是巨大的。为了解决 HCC 护理方面的差距，美国肝病研究协会 (AASLD) 实践指标委员会 (PMC) 旨在制定一套标准的基于过程的措施和患者报告的结果 (PRO)，以及 HCC 护理连续体。我们根据结构化的文献回顾确定了 HCC 护理的候选过程和结果测量。一个由 13 名成员组成的小组在整个 HCC 护理连续体中具有内容专业知识，使用改进的 Delphi 方法（两轮评级）评估候选措施的重要性和绩效差距，以确定最终措施集。7 个不同机构的 74 名 HCC 患者根据结构化范围审查对候选 PRO 进行了排名。在 135 个小节中，有 29 个小节进入最终集。这些包括监测（6 项措施）、诊断（6 项措施）、分期（2 项措施）、治疗（10 项措施）和结果（5 项措施）。示例包括每 6 个月使用一次超声（± 甲胎蛋白 [AFP]）、需要对高危人群进行监测、对新出现的 AFP 升高的患者进行诊断测试、多学科肝肿瘤委员会 (MLTB) 审查肝脏影像-报告和数据系统 4 病变、诊断时的标准评估、基于巴塞罗那临床肝癌分期的治疗建议、治疗方案的 MLTB 讨论、评估肝移植候选资格的适当转诊以及姑息治疗的作用。PROs 包括与疼痛、焦虑、对治疗的恐惧以及对最佳个体治疗和未来的不确定性相关的那些。AASLD PMC 制定了一套明确的 HCC 护理质量措施，以帮助弥合指南建议与可衡量过程和结果之间的差距。这些指标的测量和后续实施可能是改善这一高危人群患者护理和结果的核心步骤。