Understanding the hidden burden of cancer care: Insights presented at ASCO 2026
At ASCO 2026, Sciensus presented findings from a multi-country survey run in partnership with Rare Patient Voice exploring how patients and caregivers experience cancer treatment access across Europe.
The research examined access to treatment, medication delivery and the day-to-day realities of cancer care, including the distinct challenges faced by people living with rare cancers.
While cancer care innovation often focuses on breakthrough therapies and clinical outcomes, our findings highlight another critical dimension of care: the operational and emotional burden patients face while navigating treatment.
For many individuals, particularly those living with rare cancers, the healthcare journey extends far beyond the hospital or clinic.
The survey gathered perspectives from patients and caregivers across five European countries to better understand how cancer care is experienced in practice, not just how systems are designed to function.
The findings reinforce an important reality: while many patients can access effective therapies, the journey to receive and maintain treatment remains complex and uneven.
What we learned
Across all five countries, patients and caregivers reported consistent challenges related to treatment access, service reliability and the practical burden of collecting medication.
More than half of respondents either lacked access to home delivery services or were unaware such services were available, despite widespread belief that home delivery could improve quality of life.
The logistical burden was also significant. Many respondents reported spending more than an hour collecting medication, while some faced journeys exceeding two hours for a single trip.
These findings demonstrate that barriers to care are not always driven by treatment availability alone. Logistics, awareness and system complexity also play a major role in shaping the patient experience.
The rare cancer experience
While access challenges exist across the broader cancer population, the burden is often distinct and more acute for people living with rare cancers.
Patients described long travel distances to specialist centres, fragmented treatment pathways and difficulty accessing the expertise needed to support their care.
Access to innovation also remains limited. Only a small proportion of respondents living with rare cancers reported participating in Early Access Programmes (EAP) or clinical trials, despite positive experiences among those who had.
Several common themes emerged across responses:
- Travel to specialist centres creates significant time, financial and coordination pressures
- Referral pathways are often unclear or difficult to navigate
- Indirect costs, including travel expenses and time away from work, add further strain
- Awareness of clinical trials and Early Access Programmes remains low
Together, these factors contribute to a disproportionate burden for rare cancer patients and their families.
Why home delivery matters
The research also highlighted strong interest in home-based delivery of cancer care.
The majority of respondents believed that home delivery services would have a meaningful impact on quality of life, with many describing the potential benefit as significant or even life changing.
However, access to home-based services remains inconsistent across countries, and experiences relating to reliability vary considerably.
This presents an opportunity not only to improve access to services, but also to strengthen consistency, trust and confidence in service delivery.
Implications for the future of cancer care
These findings reinforce the need for more coordinated and accessible models of cancer care delivery.
As cancer treatment becomes increasingly personalised and complex, healthcare systems will need to place greater emphasis on reducing practical barriers that affect adherence, continuity of care and overall patient experience.
Services such as home-based care, medication delivery, proactive patient engagement and integrated care coordination may play an increasingly important role in supporting patients throughout treatment.
The research also highlights the importance of designing healthcare systems around real-world patient experiences. Factors such as convenience, accessibility, communication and continuity of care are increasingly recognised as essential components of quality care.
Addressing the hidden burden of treatment will be critical to building more equitable, sustainable and patient-centred models of cancer care in the future.
What’s next
This research represents an important step in understanding the real-world barriers cancer patients face across Europe. We’re grateful to the team at Rare Patient Voice for their collaboration and support in helping bring patient and caregiver perspectives into this research.
The findings highlight an opportunity for healthcare systems and industry partners to reduce treatment burden through more coordinated and accessible models of care, particularly for those living with rare and complex conditions.
At Sciensus, we continue to work with partners across Europe to support approaches that improve access, reduce burden, and better reflect how patients experience treatment in practice.
