Quality of Life
Share your experience – it takes about 10 minutes
For patients, survivors, carers and family members. Health professionals close to care are also welcome.
Confidential – You can stop at any time – If you wish, we will invite you to a workshop or interview
Why this topic matters
Symptoms
Symptoms such as fatigue, pain and nausea can affect how yo feel and what you can do.
Emotional wellbeing
Living with uncertainty and worry can impact mood and mental health.
Daily life & relationships
Liver cancer can influence routines, roles and the connections that matter.
What we want to learn
Symptoms
Which symptoms matter most and how they affect everyday life.
Energy & functioning
How fatigue and physical limitations affect activity and independence.
Emotional impact
The emotional challenges and how people cope and stay resilient.
Social support
The role of family, friends and community in patient wellbeing.
Priorities for care
What matters most to you and what could improve your care.
Which are the main possible symtoms?
1. Appetite & weight changes
Loss of appetite, feeling full quickly, weight loss.
2. Extremity symptoms
Numbness, tingling or swelling in hands, arms or legs.
3. Fatigue & loss of strength
Feeling very tired or weak, loss of muscle strength.
4. Digestive symptoms
Nausea, vomiting, diarrhea, constipation, bloating.
5. Pain
Pain in the abdomen, shoulder or other areas.
6. Sensory changes
Changes in taste or sense of smell.
7. Skin changes
Itchy skin, yellowing of skin or eyes, changes in skin color.
8. Other symptoms
Dizziness, shortness of breath, dry mouth, trouble sleeping, and more.
How it can affect daily life
1. Emotional well-being
Feelings, stress, body image, worry.
2. Cognitive function
Memory, focus, mental clarity.
3. Physical functioning
Energy, movement, activities and self-care
4. Other daily-life impacts
Relationships, routines, finances, social life.
Source: Patel, N., et al. 2022. Understanding the patient experience in hepatocellular carcinoma: A qualitative patient interview study. Quality of Life Research, 31(2), 473–485. https://doi.org/10.1007/s11136-021-02903-4
What the literature highlights
Quality of life is shaped by physical, emotional, social and practical factors.
Symptoms burden can affect daily activities and independence.
Understanding patient priorities helps improve supportive care.
Source: Grønkjær, L. L., & Lauridsen, M. M. (2021). Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review. JHEP Reports, 3(6), 100370. https://doi.org/10.1016/j.jhepr.2021.100370
Selected reading
Norman, et al., 2022
Hepatocellular carcinoma and its impact on quality of life: A review of the qualitative literature. European Journal of Cancer Care, 31(6):e13672
Serper, et al., 2022
Patient-reported outcomes in HCC: A scoping review by the Practice Metrics Committee of the American Association for the Study of Liver Diseases. Hepatology. 76(1):251-274
Kang, et al., 2020
Systematic Review of Studies Assessing the Health-Related Quality of Life of Hepatocellular Carcinoma Patients from 2009 to 2018. Korean Journal of Radiology, 21(6):633-646
How you can contribute
1. Interviews
One-to-one conversations to understand personal
experiences and priorities.
2. Group conversations
Small group discussions to
share experiences and identify common themes.
3. Co-creation activities
Collaborative activities to generate ideas and explore solutions together.
4. Prioritisation of needs
Helping to prioritise what
matters most to improve
living with liver cancer.
Patients & survivors
Share your experiences and help shape research that reflets what matters to you.
Carers & family members
Your perspective helps us understand the impact on loved ones.
Healthcare professionals
Contribute your insights to improve patient-centred care and support.
All activities follow ethical principles of respect, confidentiality and voluntary participation.
In collaboration with
Your experience can help improve liver cancer care.
Together we can put what matters most to patients at the heart of research and care.