Measuring What Matters: A Pan-European KPI Framework for Cancer Literacy Programmes

Background

Despite strong evidence linking low cancer literacy to delayed diagnosis and reduced screening uptake, existing performance frameworks focus on clinical outcomes, leaving patient understanding and engagement unmeasured. The EU-funded CURTAIN project developed the first tiered framework of prioritised cancer literacy indicators to monitor the impact, effectiveness, and equity of cancer literacy programmes across Europe.

Methods

A three-phase approach was applied: (1) evidence synthesis from prior mapping activities; (2) a multi-country expert focus group (n = 25 participants, 8 countries, including academia, public health agencies, civil society, SMEs and healthcare professionals) using a Delphi-informed structured consensus method with Likert-scale polling; (3) SMART-informed qualitative assessment with a 40% importance cut-off to distinguish core from optional indicators.

Results

38 core indicators were prioritised across 6 domains. Comprehension & Knowledge Gain yielded the highest scores: knowledge of early warning signs (85%), understanding of modifiable cancer risks (80%), and reduction of misconceptions (80%). In Behavioural Change, screening uptake (72%) and vaccination initiation (71%) were top-ranked. Health System & Empowerment prioritised awareness of patient rights (75%) and confidence during consultations (65%). In Engagement, sustained re-engagement (65%) far outranked attendance rates (30%). Digital Literacy & Misinformation was the strongest domain overall, with an ability to identify false claims reaching 91% and confidence in challenging misinformation at 80%. Equity-adjusted outreach indicators (69%) were consistently supported across domains.

Conclusions

Cancer literacy programmes must be held accountable for measurable outcomes across cognitive, behavioural, digital, and equity dimensions. The prioritised tiered framework provides a practical tool for EU-level comparability, programme accountability, and policy alignment.

Key messages

• A tiered framework of prioritized cancer literacy indicators is now available: 38 core indicators across 6 domains enable standardized, outcome-oriented measurement across European settings.

• With 91% expert endorsement, the ability to identify health misinformation is the single highest-ranked indicator. Digital resilience must become a core component of cancer literacy programmes.