How Empowered Docarriers of Hereditary Gene Mutations Participating in an Annual Review

How empowered docarriers of hereditary gene mutations participating in an Annual Review Program feel about managing their cancer risk?

Lucinda Hossack1, Victoria Rasmussen1, Mary-Anne Young1,Mary Shanahan1,Dr Laura Forrest1,2, Lyon Mascarenhas, Chris Michael-Lovatt1, Dr Susan Shanley1, Dr Gillian Mitchell1,2.

1Peter MacCallum Cancer Centre, East Melbourne

2Sir Peter MacCallum Department of Oncology, The University of Melbourne

Background

In 2009, the Familial Cancer Centre (FCC) at Peter MacCallum Cancer Centre began been offering a long term follow up program for mutation carriers known as the Annual Review Program (ARP). Through this program we have identified patients’ unmet information or support needs related to managing their cancer risk and communicating genetic risk information.

The Genetic Counselling Outcome Scale (GCOS) is a validated Patient Reported Outcome Measure specifically designed for assessing patient benefits derived from clinical genetic services. It captures the construct of Empowerment, which underlies individuals’ responses to learning about their genetic cancer risk. This outcome aligns with the aims of the ARP to facilitate patient adjustment and enhance confidence in the self-management of cancer risk.

Using the GCOS we assessedmutation carriers’levels of empowerment during different stages of participation in the ARP.

Method

905 patients have been invited to complete three GCOS questionnaires over a period of five years (June 2013 -June 2018). Eligible patients were identified through the FCC database and mailed the questionnaire alongside their usual ARP clinical questionnaire.

Data analysis

Preliminary quantitativeanalysiswas undertaken on data collected from June 2013 to July 2014.Patient demographic data such as age, gender, time since receipt of genetic testing resultsand survey group (e.g., baseline or review) were included in a multiple linear regression analysis predicting GCOS total scores.

Results

Data from 439 (48%) patients,who completed an initial GCOS questionnaire (at a median interval of 6 years post testing) was analysed. Lower ageand longer duration in the ARP were both significantly associated with higher GCOS scores (i.e., greater Empowerment) (p<0.05).

Conclusion

Thesignificantly lower levels of Empowerment detected in the baseline group, compared with the review group, provides initial support for the positive impact of the ARPon patients’ sense of control over their increased cancer risk.