Psychosocial aspects of mainstreaming genetic counselling for genetic testing of BRCA1 and BRCA2 in ovarian cancer patients in Malaysia (MaGiC)

Background: Mainstreaming cancer genetics may be an option to improve access to genetic testing in most parts of Asia, including Malaysia. The MaGiC study is conducted to study the feasibility of mainstreaming and the psychosocial impact of BRCA testing in ovarian cancer patients in Malaysia. The study participants are recruited via the traditional genetics pathway where patients are counselled by the clinical geneticists or genetic counsellors or via the mainstreaming pathway where the patients are counselled by non-genetics clinicians.  Methods: This is a prospective observational study of 800 patients with non-mucinous ovarian cancer irrespective of family history. Questionnaires were conducted via telephone interviews after pre-test counselling and after result disclosure. Psychosocial impact was measured using the Genetic Counselling Satisfaction Scales (GCSS), Decisional Conflict Scale (DCS), Psychosocial Aspect of Hereditary Cancer (PAHC) and Cancer Worry Scale (CWS).  Results: Our preliminary analysis suggests that GCSS, DCS, PAHC and CWS were reliable. For GCSS, most of the participants were satisfied with their cancer genetic counselling experience at both pre- and post-test. Majority of participants were not conflicted in making decision and felt informed of their choices and related benefits and risks after pre-test counselling and after result disclosure. PAHC showed that 79% of participants revealed a problem in at least one domain at pre-test and about 69% at post-test mainly in the domain “ ‘ living with cancer ” ’ . Distress thermometer (DT) showed that about 26% of participants may need psychosocial support at pre‑test. However, this has reduced to 17% after the result disclosure. As for CWS, about 41% of participants are frequently worried about the possibility of getting cancer again at both pre- and post-test.  Conclusion: Interim results from this study will demonstrate the psychosocial challenges and the feasibility of introducing mainstreaming cancer genetics in Malaysia. NMRR-16-1322-31114, UMMC 20163-2255 and RSDH 201612.2.