With the advent of poly‐ADP‐ribose polymerase inhibitor (PARPi) therapies, the focus of genetic testing for breast, ovarian, and other cancers has shifted from risk management to treatment decision‐making in high‐resource settings. Due to the shortage of genetic counselors worldwide, alternative ways of delivering genetic counseling have been explored, including training nongenetics healthcare professionals (NGHPs) to provide genetic counseling. However, little is known about the feasibility of adopting such models in healthcare settings with insufficient specialists, where population health literacy is low and where access to new therapies may be limited. In this study, we evaluated the attitudes, considerations, and self‐efficacy of oncologists, breast surgeons, and general surgeons in mainstreaming breast cancer genetic counseling in Malaysia, a middle‐income Asian country with a universal healthcare system. We developed a 32‐item survey via a modified Delphi method, which was then distributed via a purposive and network sampling approach. While 77% of respondents expressed interest in providing breast cancer genetic counseling, 85% preferred to refer patients directly to genetic services for genetic counseling and testing. The main considerations for mainstreaming were the cost of genetic testing and PARPi therapy, as well as the availability of support from genetics professionals. Respondents reported a lack of confidence in communicating genetic risk, particularly to patients with poor health literacy, and in the clinical management of patients with variants of uncertain significance. Our results highlight the urgent need to train more NGHPs in providing genetic counseling and testing in low‐to‐middle income countries, and suggest that the mainstay for genetic counseling in this setting may be for risk management rather than access to PARPi therapy.
BackgroundIdentifying patients with BRCA mutations is clinically important to inform on the potential response to treatment and for risk management of patients and their relatives. However, traditional referral routes may not meet clinical needs, and therefore, mainstreaming cancer genetics has been shown to be effective in some high-income and high health-literacy settings. To date, no study has reported on the feasibility of mainstreaming in low-income and middle-income settings, where the service considerations and health literacy could detrimentally affect the feasibility of mainstreaming.MethodsThe Mainstreaming Genetic Counselling for Ovarian Cancer Patients (MaGiC) study is a prospective, two-arm observational study comparing oncologist-led and genetics-led counselling. This study included 790 multiethnic patients with ovarian cancer from 23 sites in Malaysia. We compared the impact of different method of delivery of genetic counselling on the uptake of genetic testing and assessed the feasibility, knowledge and satisfaction of patients with ovarian cancer.ResultsOncologists were satisfied with the mainstreaming experience, with 95% indicating a desire to incorporate testing into their clinical practice. The uptake of genetic testing was similar in the mainstreaming and genetics arm (80% and 79%, respectively). Patient satisfaction was high, whereas decision conflict and psychological impact were low in both arms of the study. Notably, decisional conflict, although lower than threshold, was higher for the mainstreaming group compared with the genetics arm. Overall, 13.5% of patients had a pathogenic variant in BRCA1 or BRCA2, and there was no difference between psychosocial measures for carriers in both arms.ConclusionThe MaGiC study demonstrates that mainstreaming cancer genetics is feasible in low-resource and middle-resource Asian setting and increased coverage for genetic testing.
Background: Identification of BRCA mutations in ovarian cancer patients is important for their medical management and preventative measures for their relatives. However, due to cost, lack of genetic counsellors, clinical geneticists and awareness among clinicians, there is inadequate genetic testing in most parts of Asia. Mainstreaming genetic counselling may improve access to BRCA genetic testing. The MaGiC study aims to determine the prevalence of BRCA1/BRCA2 mutations, feasibility of mainstreaming and the psychosocial impact of genetic testing in Malaysian ovarian cancer patients. Methods: This is a prospective observational study of 800 patients with non-mucinous ovarian cancer irrespective of family history, recruited via mainstreaming or the traditional genetic pathway. Genetic Counselling Satisfaction Scale, Decisional Conflict Scale, Psychosocial Aspect of Hereditary Cancer (PAHC) and Cancer Worry Scale are used to measure the feasibility and psychosocial outcomes. Mainstreaming clinicians provide feedback on their experience and intention for mainstreaming through a questionnaire. Results: 47 clinicians from 25 sites nationwide recruited 426 patients (46% Malay, 37% Chinese, 8% Indian, 9% Indigenous). 383 patients were tested. 52 (13.6%) pathogenic mutations, 52 (13.6%) VUS and 279 (72.8%) negatives were identified. Most patients were satisfied with their counselling experience. Most felt informed of benefits and risks, and felt less conflicted in making decision after counselling. However, the PAHC showed 72% of patients after pre-counselling and 55%, after result disclosure reported to have issue in at least one domain. 24% of patients reported to feel some distress after the pre-counselling. 77% of mainstreaming clinicians reported that they are confident of their BRCA knowledge to counsel patients and 80% would want to incorporate BRCA testing into their clinic. Conclusions: Interim results showed satisfaction in the genetic counselling services and reduction in the decisional conflict. Majority of the clinicians active in mainstreaming want to continue the service. Mainstreaming cancer genetics may be possible to improve access to genetic counselling and testing in Malaysia.Legal entity responsible for the study: Cancer Research Malaysia. Funding: AstraZeneca.
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