Norman Eleanor M L, Weil Jennifer, Philip Jennifer
Palliative Nexus Group, Department of Medicine, University of Melbourne at St Vincent's Hospital, Melbourne, Australia.
Eur J Cancer Care (Engl). 2022 Nov;31(6):e13672. doi: 10.1111/ecc.13672. Epub 2022 Aug 16.
Hepatocellular carcinoma (HCC) carries significant burden of disease, with high mortality rates and poor prognosis. It is therefore important to consider quality of life (QoL) for patients with HCC. Quantitative research assesses HCC and QoL via standardised measurement tools, but these do not capture the full scope of patient experiences. This review examines the body of qualitative research on this topic, to develop a comprehensive understanding of QoL for this population.
Medline, EMBASE and PsycINFO were systematically searched with keywords relating to HCC, QoL and patient experience. After applying inclusion and exclusion criteria, key findings of included studies were extracted and analysed for themes.
Eleven studies were included for thematic analysis, with five themes identified as central to QoL: (1) burden of physical symptoms and treatment side effects; (2) psychological impact and coping strategies; (3) social function and stigma; (4) spiritual wellbeing, sense of self and meaning of illness and (5) pervasive uncertainty.
HCC profoundly impacted patients' lives, spanning physical, psychological, social and spiritual QoL domains. While QoL was reduced overall, some features of patient experiences that enhanced QoL were noted. The findings complement data from quantitative studies, helping to build a richer understanding of QoL.
肝细胞癌(HCC)带来了重大的疾病负担,死亡率高且预后不良。因此,考虑HCC患者的生活质量(QoL)很重要。定量研究通过标准化测量工具评估HCC和QoL,但这些工具无法全面涵盖患者的经历。本综述考察了关于该主题的定性研究,以全面了解这一人群的QoL。
使用与HCC、QoL和患者体验相关的关键词,对Medline、EMBASE和PsycINFO进行系统检索。在应用纳入和排除标准后,提取纳入研究的主要发现并分析主题。
纳入11项研究进行主题分析,确定了五个对QoL至关重要的主题:(1)身体症状和治疗副作用的负担;(2)心理影响和应对策略;(3)社会功能和耻辱感;(4)精神健康、自我认知和疾病意义;(5)普遍存在的不确定性。
HCC对患者的生活产生了深远影响,涵盖身体、心理、社会和精神QoL领域。虽然总体QoL有所下降,但也注意到患者经历中一些提高QoL的特征。这些发现补充了定量研究的数据,有助于更全面地理解QoL。