At risk and unreachable - Implementing the Family Communication Tool into the clinic to improve dissemination of information. — ASN Events
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  2. Lynch Syndrome: improving patient outcomes through a translational research network
  3. At risk and unreachable - Implementing the Family Communication Tool into the clinic to improve dissemination of information.

At risk and unreachable - Implementing the Family Communication Tool into the clinic to improve dissemination of information. (#132)

Erinna Martin 1 2 , Emma Healey 3 , Rachel Williams 1 , Sian Greening 3 , Linda Warwick 4 , Claire Wakefield 5 , Kathy Tucker 1
  1. Hereditary Cancer Clinic, Prince of Wales Hospital, Randwick, New South Wales, Australia
  2. Prince of Wales Clinical School, University of New South Wales, Sydney, New South Wales, Australia
  3. Illawarra Cancer Care Centre, Wollongong Hospital, Wollongong, New South Wales, Australia
  4. ACT Genetic Service, The Canberra Hospital, Woden, Australian Capital Territory , Australia
  5. Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, New South Wales, Australia

Aim: The hereditary nature of Lynch syndrome makes it essential for those diagnosed to provide their relatives with information about their increased risk of carrying the gene. Our previous work demonstrated that emotional, geographical, or family dynamics and miscommunication barriers can prevent BRCA1/BRCA2 mutation carriers from sharing this information with family members, and that these can be addressed by a telephone intervention, using a family communication tool (FCT) to guide discussion. This study aims to: 1) determine the effectiveness of the FCT in the dissemination of information in Lynch syndrome families, 2) assess the effect of FCT on workload, and 3) implement the FCT into standard clinical practice.
Method: MLH1, MSH2, MSH6 PMS2 mutation carriers from four participating hospitals were identified through the genetic data-base. Training of genetic counsellors was conducted in twenty minute to one hour sessions with documents and support provided. Following training, genetic counsellors conducted follow-up with these carriers using the FCT as part of clinical care. Genetic counsellors recorded details including family members informed, resources provided, risk management changes and then recorded the time of the process.
Results: To date, 60 identified mutation carriers have been followed up using the FCT. Data analysis identified 31 Lynch syndrome families with incomplete family dissemination and incomplete testing uptake. The intervention led to provision of resources to assist in family discussion about screening recommendations or availability of testing, and identified cases requiring further clinical review. Clinical time averaged thirty minutes per individual. Time was reduced in family clusters due to the electronic FCT. Feedback regarding the FCT was positive, particularly that the FCT assisted them in streamlining discussion.
Conclusion: This follow-up study is providing evidence that the FCT is valuable in reaching “at risk” relatives in the clinical setting and in different hereditary cancer syndromes.

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