How empowered do carriers of hereditary cancer gene mutations participating in an annual review program feel about managing their cancer risk? — ASN Events
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How empowered do carriers of hereditary cancer gene mutations participating in an annual review program feel about managing their cancer risk? (#72)

Lucinda Hossack 1 , Victoria Rasmussen 1 , Mary-Anne Young 1 , Laura Forrest 1 2 , Mary Shanahan 1 , Clare Hunt 3 , Marion Harris 3 , Lyon Mascarenhas , Chris Michael_Lovatt 1 , Susan Shanley 1 , Gillian Mitchell 1
  1. Peter Mac Callum Cancer Centre, East Melbourne, VIC, Australia
  2. The University of Melbourne, Melbourne
  3. Monash Health, Melbourne

Background
The Familial Cancer Centre (FCC) at Peter Mac Callum Cancer Centre (PMCC) and Monash Health (MH) offers a long term annual review program (ARP) for carriers of hereditary gene mutations. This program can identity patients with unmet information or support needs related to managing their cancer risk and in communicating genetic risk information to at risk relatives.
The Genetic Counselling Outcome Scale (GCOS) is a validated Patient Reported Outcome Measure. It captures the construct of Empowerment, which aligns with the ARP aims to facilitate patient adjustment and enhance confidence in the self-management of cancer risk.
Using the GCOS we assessed mutation carriers’ levels of Empowerment during different stages of participation in the ARP.

Method
1304 patients from PMCC and MH FCC’s have been invited to complete three GCOS questionnaires in addition to their clinical ARP questionnaire over a period of five years (June 2013-June 2018).

Data analysis
Preliminary quantitative analysis was undertaken on data collected from June 2013 to July 2014 using a multiple linear regression analysis predicting GCOS total scores.

Results
Data from the first 439 (33%) patients, who completed an initial GCOS (at a median interval of 6 years post testing) has been analysed to date. Lower age (p<0.001) and longer duration in the ARP (p<0.05) were both significantly associated with higher GCOS scores (i.e., greater empowerment) (p<0.05). We will present data from the updated set of responders by November 2015.

Conclusion
The initial results provide preliminary evidence for the positive impact of the ARP in assisting patients gain a greater sense of control over their increased cancer risk. The final data will determine whether ARPs can impact on patient’s level of empowerment. We also plan to analyse patients Empowerment scores associated with their pariticpation in an ARP and with additional data regarding use of cancer risk management strategies, to determine if an ARP has impact on uptake of effective cancer risk management strategies.

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