Implementing scalable psychosocial interventions to address patient-identified needs in hereditary cancer syndromes.
Abstract
e22652 Background: Individuals with hereditary cancer syndromes (HCS), including hereditary breast and ovarian cancer and Lynch syndrome, face lifelong surveillance demands and complex psychosocial burdens affecting both cancer survivors and high-risk individuals. In our previous study, 81% of HCS patients expressed interest in support services including emotional and behavioral support, care coordination, family testing, and peer support. This study evaluates implementation and outcomes of targeted psychosocial interventions addressing patient-identified needs. Methods: As part of a quality improvement initiative, patients with HCS receiving care through a genetics and personalized cancer prevention program were offered support from an embedded genetic social worker. Services included: (1) peer support groups, (2) care coordination, (3) counseling addressing distress and family dynamics, (4) family cascade testing assistance, and (5) behavioral health referrals. Patients were contacted 2-4 weeks post-appointment to assess service utility. Follow-up included self-reported stress "before" and "after" using a validated 0-10 Numeric Rating Scale for stress (NRS) and likelihood of independently seeking services. Demographic and cancer history data were abstracted from medical records. Results: Eighty-six patients received social work support (median age 42 years, range 20-81; 92% female; 64% non-Hispanic White; 76% tested within past year; 29% cancer survivors; 46% Ashkenazi Jewish). Pathogenic variants included BRCA1/2 (45), CHEK2 (7), Lynch syndrome genes (13), RAD51D (3), BRIP1 (1), ATM (1). All completed stress assessments; 73% reported high stress (≥5) before intervention, decreasing to 47% after, with mean scores from 5.6 to 3.9 (95% CI, 1.4-2.4; p<0.001; Table 1). Patients utilized peer support groups (51%), care coordination (49%), family testing (39%), psychosocial counseling (29%). Many reported being unlikely to independently access support groups (70%) or psychosocial counseling (36%). Among support group attendees, 85% reported improved well-being. Conclusions: Psychosocial and educational interventions tailored to patients with HCS are feasible, well utilized, and reduce patient-reported stress. Integrated into routine gynecologic oncology care, these services address key challenges in coping, decision-making, and prevention, offering a scalable and replicable model for hereditary cancer care. Future studies are needed to evaluate strategies to optimize and expand scalability. HCS patient-reported stress levels before and after genetic social work intervention (n=86). Measure Before Intervention After Intervention Change p-value Mean stress score (0-10 NRS) 5.6 3.9 -1.7 <0.001 High stress prevalence (≥5), n (%) 63 (73%) 40 (47%) -26% <0.001
Article Details
Journal Info
Journal of Clinical Oncology
Lippincott Williams & Wilkins
Authors (11)
Emily S. Epstein
Weill Cornell Medicine, New York, NY
Pranya Gaddipati
Weill Cornell Medicine, New York, NY
Sulekha Junnarkar
Weill Cornell Medicine, New York, NY
Michelle Primiano
Genetics and Personalized Cancer Prevention Program, Weill Cornell Medicine, New York, NY
Susan Marchal
New York Presbyterian, New York, NY
Ivy Song
Weill Cornell Medicine, New York, NY
Kate Cornelius-Schecter
Weill Cornell Medicine, New York, NY
Lauren Davis Rivera
Weill Cornell Medicine, New York, NY
Steve Lopez
Department of Medical Oncology, Weill Cornell Medicine/New York Presbyterian Hospital, New York, NY
Ravi Sharaf
Department of Medicine, Weill Cornell Medicine, New York, New York, NY
Melissa Kristen Frey
Division of Gynecologic Oncology, Department of Obstetrics and Gynecology, Weill Cornell Medicine, New York, NY