NuGenA (Nurse Led Genetic Counselling and Awareness): A proof-of-concept to implementation of genetic counseling for HBOC in LMICs.

Abstract

10583 Background: Poor access to genetic testing and counselling represents a major gap in cancer care in resource-restricted-settings. Our pilot work in Eastern India (2017-2019) demonstrated improved uptake of BRCA genetic testing (89% vs.55%) in ovarian cancer (OC) after training one nurse specialist in genetic counselling. We introduced NuGenA program in 2020 to scale-up this effort as proof-of-concept. Methods: Ethical approvals were obtained (KolGo/CTRI/2021/06/034308/HMSC). A nurse-led structured training program combining lectures/modules/live-demonstration-workshops/role-playing using offline and virtual learning methods were administered to sensitize/train all tiers of nurses including train-the-trainers in genetic counselling. A comprehensive NuGenA questionnaire including demographic, family history, CAM, pre/post-test counselling satisfaction-regret scale, QOL and willingness-to-pay (WTP) for genetic testing was administered by trained nurses. Physician and nursing interviews were conducted at 1 year to assess barriers/challenges/success of program. KolGoTrg EASE (Ethical/Acceptable/Affordable/Sustainable/Scalable/Effective/Early-diagnosis-and-treatment of barriers) matrix was used to measure key performance indicators and impact of implementation. Results: Through 40 sessions/workshops, 126 nurses were trained across India (8 centres, 34 nurses), Nepal (10 centres,30 nurses), Bangladesh (2 centres,60 nurses) and Africa (2 centres,2 nurses) with significant improvement in post training KAP scores. 7 genetic clinic/set-ups were created. 270 OC patients and 458 family members were counselled by nurses. 159 OC patients had BRCA testing, 48 (30%) being positive. Until now, out of 235 at-risk family members identified, 90 were counselled and 12 tested for BRCA (6 positive);2 opted for risk-reducing surgery. Unique barriers/challenges were identified including cost of BRCA test, provider hesitancy, social stigma, requiring customised solutions. WTP for genetic testing using CoPay model was accepted by 99/158 (62%). Another 100 community-nurses were sensitized through NuGenA camps/sessions approved by government/health authorities resulting in conduct of >150 COBRA (cervix/oral/ovary/breast-cancer awareness) sessions and patient-public-engagement initiatives. NuGenA modules are being included in national/international nursing curriculums. A World Ovarian Cancer Coalition charter-champion award and adoption by IGCS training sites exemplify global recognition/outreach. Conclusions: Nurse-led model proved scalable and impactful in resource-restricted settings, facilitating transformative changes in provider/patient-public engagement, attitude and practice towards genetic testing.