International Core Standards for Information in Screening
Lead: Lena Al-Khudairy
Dates: 01/06/20 - 13/09/21
To explore core standards and additional support that appear in information given to people invited to take part in screening. To focus the research, breast cancer and fetal anomaly screening were used as examples.
Policy and Practice Partners:
Public Health England
Aims and Objectives:
1. Define an internationally agreed set of principles to apply to the development and provision of evidenced based information,
2. Help facilitate informed choice
3. Provide an international benchmark for individuals invited for screening
· Rapid review of published evidence for information content in screening information for breast cancer and fetal anomaly
· Interviews and document analysis for screening information content to determine organisation of information production and development in the UK
· International consensus workshop
1. To review and discuss the findings of WP1 and WP2
2. Review the initial recommendations framework which integrates the data collected
1. Our rapid review identified 24 relevant RCTs (12 for breast cancer and 12 for fetal anomaly screening). The studies were from Australia, Canada, Denmark, Germany, Hong Kong, Italy, Japan, Netherland, Spain, Sweden, UK and USA. The formats of the decision aids (interventions) identified included leaflets, videos and computer-based tools (static and interactive). Evidence for both breast cancer and fetal anomaly showed that informed choice and knowledge improved among those who received the interventions. Most of the studies which accessed decisional conflict reported no significant difference in decisional conflict between the intervention and control and some studies reported lower decisional conflict among those in the intervention group. Overall, decision aids improved informed choice and knowledge without negatively impacting decisional conflict.
2. Twelve interviewed across the eight countries (one pending) have been conducted. Eleven transcripts have been coded and analysis is ongoing. The majority of participants state that informed choice is the focus of their ‘leaflet’, though for some there is a more concerned drive toward increasing uptake of (breast) screening. Context and mode of presentation of ‘leaflets’ vary in terms of page limits, vocabulary and images used. The benefits and harms of screening are the most frequently reported information included in ‘leaflets’ which suggests that they are viewed as the most important factors in the information provided to people.
All participants were concerned for Equality, Diversity, and Inclusivity and almost all make provision of information inclusive to diverse groups. Generally, measures have been taken to increase the ‘understandability’ of ‘leaflets’, such as input in developing the content of the ‘leaflets’ from women, patients or professionals specifically trained in communicating health information to the general public
3. Document analysis of nine leaflet documents indicate that breast cancer screening documents had a clear set of aims. However, this was not clearly detected in fetal anomaly documents. Breast cancer screening documents tend to present probabilities of screening outcomes in a clear manner but this is not as apparent in the fetal anomaly screening documents. Overall, breast cancer screening documents tend to have a clearer structure and layout.
Implications for Implementation: