e-QuoL presents a multi-dimensional, survivor-centred approach that surpasses current standards. It significantly advances understanding of survivors’ under-recognised psychosocial needs—fatigue, sexual health, mental health, social barriers, even experiences of violence or abuse—helping destigmatise these issues.
Through large-scale cross-country engagement, literature reviews, and participatory methods, the project identified key unmet needs and raised awareness among professionals and policy-makers. Survivors, families, and organisations were central to the co-design process, ensuring relevance, trust, and cultural sensitivity.
e-QuoL also contributed conceptual innovation by applying the notion of akrasia—the gap between knowing and doing—to better understand health behaviour challenges in survivorship. This informed patient-friendly tools designed for realistic, actionable self-management.
The project delivered two key, complementary digital tools:
- Passports (SurPass, LOG-after): offering summaries of cancer history, guideline-based screening, and follow-up recommendations.
- MyCaree-QuoL: a supportive platform enabling survivors to assess personal needs and access culturally adapted, multilingual resources to support well-being.
To respect patient preferences, the tools remain distinct. Survivors clearly asked to avoid over-medicalisation of supportive care.
Impacts include:
- Increased visibility of under-recognised survivorship challenges.
- Raised professional awareness of psychosocial care.
- Introduction of novel concepts (e.g. akrasia) into survivorship discourse.
- Improved access to tailored, multilingual resources.
- Empowered survivors and families managing long-term well-being.
- Foundation for harmonised survivorship care across Europe.
Key enablers for further success:
- Ongoing research to evaluate real-world impact and evolve tools.
- Pilot implementations in diverse health systems.
- Integration into national survivorship guidelines.
- Sustainable funding for multilingual content maintenance.
- Continued partnerships with patient groups for trust and relevance.
Potential impacts:
- Increased visibility and understanding of complex, under-recognised, and sometimes taboo survivorship needs.
- Greater awareness among health professionals of the social and psychological dimensions of survivorship, driving cultural change and stigma reduction.
- Introduction of new conceptual frameworks (e.g. akrasia) to improve understanding of barriers to health behaviour change.
- More equitable access to tailored, multilingual, and culturally adapted resources across Europe.
- Empowered survivors and families able to better manage their health and well-being, improving long-term quality of life.
- Contribution to harmonising survivorship care guidelines and best practices between countries.
Key needs to ensure further uptake and success:
- Continued research to evaluate real-world impact, refine content, and adapt to evolving needs.
- Demonstration projects to test adoption in diverse healthcare settings.
- Integration into national survivorship guidelines and health system workflows.
- Sustainable funding models to maintain and update multilingual content.
- Ongoing partnerships with patient organisations and HCPs to ensure trust, cultural adaptation, and relevance.
