Periodic Reporting for period 1 - e-QuoL (e-health tools to promote Equality in Quality of Life for childhood to young adulthood cancer patients, survivors and their families - a PanEuropean project supported by PanCare and Harmonic consortia)
Reporting period: 2024-01-01 to 2025-04-30
Cancer affects 35,000 children, adolescents, and young adults across Europe annually. Though 5-year survival now exceeds 80%, survivors (CAYACSs) face long-term treatment-related risks—late effects, excess morbidity and mortality, and reduced quality of life (QoL).
Holistic follow-up care is essential. It includes monitoring predictable risks like organ dysfunction or secondary cancers, and addressing unpredictable challenges such as psychological distress, fatigue, social reintegration difficulties, or sexual health concerns. These require individualised, non-medicalised support.
Effective survivorship care must combine medical data guiding prevention with a nuanced understanding of each survivor’s lived experience. Survivors also need clear, culturally adapted information in their own languages to manage long-term risks and improve well-being.
Yet, survivorship care quality and availability vary widely across Europe. Some systems offer tailored support; others provide limited services. e-QuoL aims to address these disparities by using e-health tools to improve Equity in Quality of Life for CAYACSs and their families. The project adapts digital solutions enabling survivors to access personalised information on long-term follow-up (LTFU), recommended screenings, and supportive resources in their local language.
With input from a wide, multidisciplinary consortium—including social sciences and humanities—e-QuoL ensures comprehensive attention to medical, psychological, and social dimensions, empowering survivors to navigate life after cancer.
Holistic follow-up care is essential. It includes monitoring predictable risks like organ dysfunction or secondary cancers, and addressing unpredictable challenges such as psychological distress, fatigue, social reintegration difficulties, or sexual health concerns. These require individualised, non-medicalised support.
Effective survivorship care must combine medical data guiding prevention with a nuanced understanding of each survivor’s lived experience. Survivors also need clear, culturally adapted information in their own languages to manage long-term risks and improve well-being.
Yet, survivorship care quality and availability vary widely across Europe. Some systems offer tailored support; others provide limited services. e-QuoL aims to address these disparities by using e-health tools to improve Equity in Quality of Life for CAYACSs and their families. The project adapts digital solutions enabling survivors to access personalised information on long-term follow-up (LTFU), recommended screenings, and supportive resources in their local language.
With input from a wide, multidisciplinary consortium—including social sciences and humanities—e-QuoL ensures comprehensive attention to medical, psychological, and social dimensions, empowering survivors to navigate life after cancer.
Under WP2, surveys and reviews provided a baseline of existing digital QoL solutions and defined necessary adaptations. Psychosocial needs assessments informed content organisation and priorities to better address survivor needs.
WP3 focused on supporting the development and validation of MyCaree-QuoL, through participatory workshops with patient organisations. Survivors helped co-create articles and videos, while pre-existing MOOCs were assessed, translated, and integrated into the PanCare website.
WP4 advanced the implementation of LOG-After, SurPass, and MyCaree-QuoL, preparing them for deployment and assessing integration possibilities. Interoperability between tools was explored to ensure a seamless user journey, though full integration was avoided to reduce complexity and over-medicalisation.
WP5 developed a strategic framework to evaluate satisfaction, usage, and clinical impact. Led by IGG, the clinical study protocol will be finalised by summer 2025 for submission to ethics committees.
WP6 facilitated reflection groups on ethical and social challenges, feeding into ongoing scientific publications.
WP8 addressed unanticipated ethics issues, particularly legal safeguards for disclosure and data protection.
WP3 focused on supporting the development and validation of MyCaree-QuoL, through participatory workshops with patient organisations. Survivors helped co-create articles and videos, while pre-existing MOOCs were assessed, translated, and integrated into the PanCare website.
WP4 advanced the implementation of LOG-After, SurPass, and MyCaree-QuoL, preparing them for deployment and assessing integration possibilities. Interoperability between tools was explored to ensure a seamless user journey, though full integration was avoided to reduce complexity and over-medicalisation.
WP5 developed a strategic framework to evaluate satisfaction, usage, and clinical impact. Led by IGG, the clinical study protocol will be finalised by summer 2025 for submission to ethics committees.
WP6 facilitated reflection groups on ethical and social challenges, feeding into ongoing scientific publications.
WP8 addressed unanticipated ethics issues, particularly legal safeguards for disclosure and data protection.
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.
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.