Giving patients a heads up on genetic disease and testing
Advances in genetic testing, which analyse the blood or body tissues of patients, have bolstered doctors' abilities to diagnose and treat several illnesses. But EuroGentest went one step further and not only conducted a major survey examining the quality of existing patient information in the EU, but it has published a series of 11 patient information leaflets on the main topics in genetic disease and genetic testing. Supported by patient information groups, the leaflets are available in English and are currently being translated into Italian, Polish and Romanian. They will eventually be translated into all the main EU languages.
‘In some cases, a combination of patient letters and pre-written leaflets were provided to patients and families during the genetic consultation, in others one or the other,’ explained Lewis. ‘However, no country had a comprehensive or standardised approach.’
According to Lewis, the researchers determined that there were major differences in the quality of written information in genetic clinics that patients had access to. ‘Whilst the majority of the material we assessed provided information about the condition being tested for, less than a quarter provided information on the psychological and social consequences of genetic testing, and only half provided details concerning where to access additional information and support,’ she remarked.
The researchers asked patient interest groups what their views were on the information available to people. Lewis noted that they all voiced a common concern; despite the fact that the benefits of genetic tests were usually covered, the ‘risks were either not adequately explained’ or not dealt with at all the groups had said.
‘This was also one of the major findings during the assessment. Another major finding was that pre-written materials were far more comprehensive in discussing the key issues than personal letters were, and this was the impetus for developing pre-written information leaflets for use across the EU,’ she commented.
Lewis said that the team used the resources of the EuroGentest network and conferred with all major stakeholders to develop ‘a series of 11 leaflets for patients and families about Genetic Inheritance Patterns, Chromosome Problems, Genetic Testing and Information about Your Genetic Appointment.’
She also referred to a 'Frequently Asked Questions' leaflet and 'Genetic Glossary' that patients and families, who will speak to a specialist about genetic testing, can use. ‘This information is designed to be used alongside the discussions patients and families have with a genetic specialist,’ Lewis said.