The problem/issue
In the face of new technologies and improvements in diagnosis of risk of Sudden Cardiac Death (SCD), little is known about how people cope with this increase in information.

Patient centred
Our lack of knowledge about how medical diagnosis (in particular genetic testing) impacts on individuals and families (including adolescents), makes it difficult to ensure that appropriate advice is given to patients. More data is needed on what contributes to people adapting well to news that they are at increased risk (due to family history), or to knowledge that they have or do not have the gene that leads to increased risk (i.e. a positive or negative predictive gene test result). It is also unclear whether the predictive test should be offered universally as we do not know what predicts a poor adaptation reaction.

The project includes both quantitative and qualitative aspects. The quantitative work will use questionnaires completed by people who are currently at risk (due to family history and/or positive gene test) and people who at one stage thought they might be at risk but are no longer (ie those who have a family history but have received a negative gene test result). Data on adaptation levels as well as predictors of well-being will be derived.

Qualitative aspects will involve interviews with people from at risk families to talk about the thoughts and feelings they experienced throughout the history of their knowledge of risk and distress in family due to risk/death. Interviews will also examine the thoughts and feelings of individuals going forward for predictive testing and thoughts about adolescents being offered this test.

Rooted in the real world
The information gathered through this research is largely derived from people who are at-risk themselves.

Ethical analysis
It is hoped that the data will indicate predictors of adaptation to knowledge of risk and to predictive testing. Analyses will draw out patterns and predictors of psychological adaptation. This will lead to ethical analysis of cascade screening (the practice of contacting family members through index patients rather than family members contacting the department directly) and also predictive genetic testing and whether this should be offered to any/some/all patients (including adolescents).

Outputs
To help patients: From an informed perspective, we will be able to provide more information to the patient about their likely experiences (e.g. in the form of a booklet or through patient newsletters). The information we gather will be able to be used to direct issues important for assessment and allow for more individualised, tailored clinical appointments. The ultimate aim is that psychological distress is minimised.
To help clinicians: Clinicians are naturally wary of counselling people who may be at risk of poor adaptation. If we have a clearer understanding of predictors of wellbeing in this population, patient care can be more confidently given.

For more information about this project contact Dr Amy Silver