Appendix 3: Information leaflets
Information leaflets are important, and sufficient attention should be paid to them. Existing leaflets can be used as examples or templates, but it is best to create information leaflets locally, tailored to the local context as much as possible. In general, leaflets should employ straightforward, understandable language, but this holds especially true for leaflets intended for use in areas where literacy may be limited, such as low audiological asssessment areas. Depending on the local demography, it may also be necessary to have leaflets available in more than one language or use infographics.
An information leaflet should at least include:
- the disorder being screened for, specified in terms of the relevant adverse health outcome (hearing or vision loss). It should also include background information on how common and serious the disorder is
- the health gains from screening in terms of the benefits of early detection of hearing or vision problems
- an explanation of the screening test: what it is, how it is performed, the percentage of cases that are generally detected, and the percentage of unaffected children who test positively (false positives)
- the next step: what happens if the test is positive (a second test, referral)
- possible adverse effects of screening
The leaflet should also mention that a negative result does not explicitly rule out the condition being screened for. The general public are often unaware that passing screening does not guarantee ‘normality’. All screening tests are fallible. A positive test result means the child has a high chance of having the condition, but not a 100% chance. Similarly, a negative test result means the child has a high chance of not having the condition, but also not a 100% chance.
It is important to make clear that passing screening means that a child had adequate hearing or vision at the point in time he or she was screened. The condition may also develop or worsen at a later age.
It is also important to briefly mention data collection: to make clear that data are collected and processed safely and inform parents of their rights (see also chapter 4e). For people who want to know more about this, the leaflet can refer to more detailed online information.
The leaflet should also include a phone number and an email address in case people wish to ask questions about the screening programme.
- Further reading: Information leaflets in medical screening.