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. 2024 Sep;41(9):3598-3614.
doi: 10.1007/s12325-024-02939-1. Epub 2024 Jul 25.

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

Marcus-Alexander Wörns  1 , Danielle Burns  2 , Michael Paskow  3 , Harriet Makin  2 , Jordan Miller  2 , Lucy M Turner  4 , Janvi Sah  5
Affiliations

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

Marcus-Alexander Wörns et al. Adv Ther. 2024 Sep.

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.

Keywords: Hepatocellular carcinoma; Interviews; Oncology; Patient journey map; Qualitative; Treatment goals.

Plain language summary

Liver cancer is the third leading cause of cancer death worldwide. Very few studies have directly explored how patients experience liver cancer and its treatment. This research was performed to understand the patient experience of liver cancer including treatment decisions and goals, communication dynamics between patients and their treating doctors, the types of treatment offered to patients and symptoms that patients experience while living with liver cancer. Patients and doctors were interviewed to understand their experience of living with and treating liver cancer. Overall, patients and doctors work together to decide on treatment. Patients generally trusted their doctor’s knowledge and expertise when selecting the best treatment(s) for them. Treatment decisions are mostly based on how far along the cancer has progressed. Patients described living longer and maintaining a good quality of life as their most important treatment goals, as well as avoiding liver cancer returning or worsening. Doctors identified that patients living longer, time without worsening of liver cancer and managing side effects as important treatment goals.

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Conflict of interest statement

Danielle Burns, Harriet Makin and Jordan Miller are current/previous employees and stockholders of Clarivate, a health economic and outcomes research consultancy that consults with various pharmaceutical and biotech companies and were paid consultants to AstraZeneca in connection with this study. Janvi Sah, Michael Paskow and Lucy M Turner are employees and shareholders at AstraZeneca. Marcus-Alexander Wörns has no conflict of interest to declare.

Figures

Fig. 1
Fig. 1
Patient journey map. Purple denotes patient factors. Red denotes HCP/clinical factors. Green denotes collaborative elements of journey. *Most commonly reported treatment options per disease stage. †: the most important treatment goals were similar across all disease stages. However, the most frequently reported, most important treatment goal has been included. For some patients, OS and QoL were equally important treatment options per stage. Tx treatment, Dx diagnosis, PAG patient advocacy group, CT computed tomography scan, MRI magnetic resonance imaging, HCC hepatocellular carcinoma, HCPs healthcare professionals
Fig. 2
Fig. 2
Saliency Graph1. 1To explore symptom/treatment experience, patients were asked to report which symptoms or side effects of their treatment were most bothersome to them currently (at the time of interview) on a scale of 0 (does not bother) to 10 (extremely bothersome at the time. The mean of participant bothersome scores was calculated to denote average current disturbance ratings
See this image and copyright information in PMC

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