Feasibility of Primary Care Nurse-Delivered Genetic Counselling for Mainstreaming in Ovarian Cancer Patients: A Mixed-Methods Study

The present study was conducted to explore the feasibility of implementing mainstreaming of genetic testing for patients of ovarian cancer, by training a primary care level nurse, in a subspecialty hospital setting.

Genetic testing for Breast Cancer (BRCA) gene 1 and 2 mutations in epithelial ovarian cancers and breast cancer is recommended to guide prognosis, adjuvant treatment, and prevention of second malignancies in the patient and primary malignancy in the carrier family members or relatives. In India, the prevalence of BRCA and other cancer-causing mutations is not well understood and is not sufficiently investigated. The possible benefits of mainstreaming genetic testing include increased patient uptake and identification of at-risk carriers, who may be targeted for primordial or primary prevention of genetic malignancies with favourable results. Along with this, an exploration of factors affecting the uptake of such tests, using a structured objective survey questionnaire followed by key informant interviews to develop a qualitative questionnaire for the future phase of the study was undertaken.

The uptake of genetic testing among patients was good and among healthy relatives was negligible. The affecting factors were a lack of awareness about genetic tests and economics. The qualitative study interview explored reasons for the low uptake of tests by healthy family relatives, satisfaction with the counselling, and the impact of test results on patients. Organisation of services for ovarian cancer patients with genetic and familial pathogenic variants requires essentially establishing referral pathways at all levels including primary care, genetic clinics, and gynaecological oncology multidisciplinary subspecialty clinics. The pretest counselling by trained nurses is effective but post-test counselling necessitates a specialist oncologist. The uptake of genetic testing is affected by the level of awareness among patients and kin and the costs. Thus, information and support along with the establishment of referral pathways with clearly specified criteria for patients, family members, and referring clinicians at all levels of primary care, genetic clinics, and multidisciplinary gynaecological oncology clinics are imperative.