Understanding Patient & Caregiver Needs: HCC & BTC Survey
An online survey exploring HCC and BTC patient and caregiver needs to identify opportunities to improve care and support
Challenges
Externally available data sources on Hepatocellular Carcinoma (HCC) and Biliary Tract Cancer (BTC) were scarce, making it difficult to understand patient needs and behaviours.
Patients and caregivers struggled to find disease-specific digital tools and resources, leading them to seek information online independently.
Current approaches rely on passive observation (e.g., social listening), limiting the ability to actively generate data and address key knowledge gaps.
Objectives & Endpoints
Patient & Caregiver Needs
Understand the needs, expectations, and experiences of patients with HCC and BTC and their caregivers.
Patient-Centred Care
Generate insights to support more patient-centred care and treatment decisions aligned with patient and caregiver perspectives.
Educational Preferences
Identify preferred formats and distribution channels for patient and caregiver educational materials.
Our Approach
Conducted Online survey via social media with a detailed questionnaire for HCC/BTC patients and caregivers. Key areas of assessment included:
- Diagnostic and therapeutic journeys, along with disease characteristics
- Quality of life (QoL) via EQ-5D-5L score
- Involvement in therapeutic decision-making
- Psychological burden on patients and caregivers’ burden using BSFC-s score
- Informational and educational needs, and knowledge gaps
Key Findings
High Patient & Caregiver Burden: Fear and depression were among the most burdensome aspects for patients, while a mean BSFC-s score of 16 indicated a high burden among caregivers.
Caregiver Involvement: 63.8% of patients wanted caregiver involvement in treatment decisions, while 44.6% of caregivers wanted greater involvement.
Information & Education Needs: Patients and caregivers expressed a strong need for more information, education, and involvement throughout the care journey.
Business Impact & Outcomes
Support Gaps: Identified gaps in patient and caregiver support, highlighting opportunities to improve communication, education, and holistic care.
Patient & Caregiver Insights: Provided evidence-based insights to inform more patient-centred care and treatment decisions.
Supported Scientific Publication and evidence generation.
*Campaign Days Refers to the number of days between the first and last day of survey completions
**Survey Completers include 80 patients and 260 caregivers