Patient Experience of Hepatocellular Carcinoma and Their Treatment Goals: An International Qualitative Study and Patient Journey Map.

IF 3.4 3区 医学 Q2 MEDICINE, RESEARCH & EXPERIMENTAL
Advances in Therapy Pub Date : 2024-09-01 Epub Date: 2024-07-25 DOI:10.1007/s12325-024-02939-1
Marcus-Alexander Wörns, Danielle Burns, Michael Paskow, Harriet Makin, Jordan Miller, Lucy M Turner, Janvi Sah
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Abstract

Introduction: Understanding the patient journey of hepatocellular carcinoma (HCC) may inform future clinical decision-making and enhance the patient experience. The objectives of this study were to explore the patient experience of HCC in relation to treatment options, treatment decision-making and treatment goals throughout the disease journey. This study also aimed to determine the symptoms and impacts of HCC across early, intermediate and advanced HCC.

Methods: Semi-structured 60-min interviews were conducted with n = 50 patients with HCC and n = 12 healthcare professionals (HCPs) with experience of treating patients with HCC. Interview data were analyzed using directed content analysis techniques with a hybrid inductive and deductive approach. An assessment of conceptual saturation was conducted for patients' symptom experience.

Results: Patients described treatment decisions as mostly HCP-led. In this study, surgery/resection was the most frequently offered treatment option across the HCC journey, and most patients were satisfied with the treatment options presented to them. Overall, patients described extending their overall survival (OS) and preserving quality of life (QoL) as their most important treatment goals, with patients diagnosed with advanced/unresectable HCC prioritizing QoL. HCPs also prioritized OS and progression-free survival (PFS) though reported that QoL became more important as HCC progressed. Patients experienced various symptoms across the HCC journey including fatigue, nausea, appetite loss, diarrhea and pain.

Conclusion: Overall, HCPs and patients collaborate throughout the treatment journey regarding treatment decisions and shared treatment goals. OS is critically important to patients and HCPs, though treatment goals may change depending on various clinical factors.

Abstract Image

肝细胞癌患者的经历及其治疗目标:一项国际定性研究和患者旅程图。
导言:了解肝细胞癌(HCC)患者的病程可为未来的临床决策提供依据,并改善患者的就医体验。本研究的目的是探讨患者在整个疾病过程中与治疗方案、治疗决策和治疗目标相关的 HCC 体验。本研究还旨在确定早期、中期和晚期 HCC 的症状和影响:对 n = 50 名 HCC 患者和 n = 12 名具有治疗 HCC 患者经验的医疗保健专业人员 (HCP) 进行了 60 分钟的半结构式访谈。访谈数据采用归纳和演绎混合法的定向内容分析技术进行分析。对患者的症状体验进行了概念饱和度评估:结果:患者描述的治疗决定大多由医生主导。在本研究中,手术/切除是HCC治疗过程中最常提供的治疗方案,大多数患者对提供给他们的治疗方案感到满意。总体而言,患者认为延长总生存期(OS)和保持生活质量(QoL)是他们最重要的治疗目标,而确诊为晚期/不可切除 HCC 的患者则将 QoL 放在首位。HCPs也将OS和无进展生存期(PFS)放在首位,但报告称随着HCC的进展,QoL变得更加重要。患者在整个 HCC 病程中会出现各种症状,包括疲劳、恶心、食欲不振、腹泻和疼痛:总的来说,在整个治疗过程中,医护人员和患者会就治疗决策和共同的治疗目标进行合作。尽管治疗目标可能会因各种临床因素而改变,但对患者和 HCP 而言,OS 至关重要。
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来源期刊
Advances in Therapy
Advances in Therapy 医学-药学
CiteScore
7.20
自引率
2.60%
发文量
353
审稿时长
6-12 weeks
期刊介绍: Advances in Therapy is an international, peer reviewed, rapid-publication (peer review in 2 weeks, published 3–4 weeks from acceptance) journal dedicated to the publication of high-quality clinical (all phases), observational, real-world, and health outcomes research around the discovery, development, and use of therapeutics and interventions (including devices) across all therapeutic areas. Studies relating to diagnostics and diagnosis, pharmacoeconomics, public health, epidemiology, quality of life, and patient care, management, and education are also encouraged. The journal is of interest to a broad audience of healthcare professionals and publishes original research, reviews, communications and letters. The journal is read by a global audience and receives submissions from all over the world. Advances in Therapy will consider all scientifically sound research be it positive, confirmatory or negative data. Submissions are welcomed whether they relate to an international and/or a country-specific audience, something that is crucially important when researchers are trying to target more specific patient populations. This inclusive approach allows the journal to assist in the dissemination of all scientifically and ethically sound research.
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