Mainstreaming May Improve Access to Ovarian Cancer Genetic Testing in Malaysia

By Ms. Yoon Sook Yee, Cancer Research Malaysia

Mainstreaming may improve access to ovarian cancer genetic testing inMalaysia and help identify mutation carriers who may benefit from risk management and targeted treatment, suggests preliminary results of the MaGiC Study presented at the ESMO Asia 2018 Congress.

“Screening for BRCA1 and BRCA2 mutations is recommended for all patients with non-mucinous ovarian cancer,” said lead author Ms Sook-Yee Yoon, Genetic Counsellor, Cancer Research Malaysia, Subang Jaya, Malaysia. “Genetic testing identifies mutation carriers and triggers appropriate risk management and treatment. In Malaysia BRCA genetic testing and counselling is only available at specialised centres in Kuala Lumpur but most people live outside the capital.”

The Mainstreaming Genetic Counselling for Genetic Testing of BRCA1 and BRCA2 in Ovarian Cancer Patients in Malaysia (MaGiC Study) was set up to: 1) assess the prevalence of germ line BRCA1 and BRCA2 mutations among ovarian cancer patients; 2) determine the feasibility of mainstreaming of genetic testing and counselling at local hospitals; and 3) examine the psychosocial impact of genetic testing in Malaysia.

The study was designed to recruit 800 ovarian cancer patients over a three-year period. Basic genetic counselling workshops were held for 60 non-genetic clinicians from 25 hospitals across Malaysia. Patients are counselled by a trained non-genetic clinician in their local hospital in a clinical programme led by Professor Yin Ling Woo, MaGiC’s lead clinician, or by a genetic counsellor or clinical geneticist in a programme led by Professor Meow Keong Thong, who is the lead clinical geneticist at specialised centres in Kuala Lumpur.

All blood samples are analysed for BRCA mutations by Cancer Research Malaysia, led by Dr Joanna Lim who is the diagnostic lead. Patients receive pre-test counselling, followed by test results and post-test counselling. After both pre-and post-test counselling they are interviewed by a study researcher over the telephone to assess feasibility and the psychosocial impact of the experience. Interviews are based on scales adapted for use in Malaysia, including the Genetic Counselling Satisfaction Scale, the Decisional Conflict Scale, the Psychosocial Aspects of Hereditary Cancer (PAHC) questionnaire, the Distress Thermometer, and the Cancer Worry Scale. Interview results are being compared between the two counselling processes.

Two years into the study 476 patients have been recruited, of whom 445 received genetic testing and 59 (13%) had BRCA mutations.

“Around 13% of those tested were BRCA mutation carriers which is quite similar to that found in other populations,” said Yoon. “We found carriers throughout the country and are working with local clinicians to establish protocols in local hospitals that have not managed patients with known BRCA mutations before, thus building capacity in multidisciplinary teams for high risk management of breast and ovarian cancer risk.

In terms of feasibility, patients in the local and specialised counselling arms were equally satisfied with the counselling they received. The local counselling arm has been recruiting patients more quickly than the specialised arm. Yoon said: “Patients seem to prefer local appointments, so if they are referred to another centre for genetic counselling, they seem less likely to attend.”

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Preliminary results show that the answers to the psychosocial surveys were similar between the two groups. Mostpatients were satisfied with their counselling experience, felt informed about their choices, and found it easy to decide to go ahead with genetic testing. Yoon said: “These are preliminary results but mainstreaming of genetic counselling in Malaysia may be a feasible model to improve access to genetic testing services or patients with ovarian cancer. If successful, this model could be adopted for other cancers and in other parts of Southeast Asia.”

“Cancer is still a taboo subject in Malaysia and there is a fatalistic attitude to hereditary conditions,” continued Yoon. “Genetic information can cause conflict in families and the data we are collecting on the psychosocial impact of genetic testing will provide insights into the psychosocial challenges. With this knowledge, we can focus on interventions to overcome these challenges.”

In addition, in the past, genetic testing in ovarian cancer was limited to a small number of patients with the aim of identifying relatives at risk. Now that there is a drug that can potentially treat cancer patients with BRCAmutations, genetic counselling and testing may be requested by many more patients with epithelial ovarian cancer. This may increase the number of patients who qualify for testing and specialised centres may become overloaded.