Longitudinal inherited cancer care and its impact in a rural setting.

Abstract

e22665 Background: Hereditary breast and ovarian cancer (HBOC) and Lynch syndromes (LS) are associated with elevated cancer risk. Many effective cancer prevention and surveillance strategies are recommended but uptake is suboptimal. The impact of rurality on adherence to cancer prevention and surveillance strategies and on the psychological impact and perception of care coordination in this patient population is not well understood. Methods: Patients seen > 1 year ago by our institution’s Cancer Genetics Program with a known diagnosis of LS or HBOC were recruited for participation. Enrolled patients completed a baseline Care Coordination Instrument (CCI) and Multidimensional Impact of Cancer Risk Assessment (MICRA) survey. Patients completed a clinic visit with a cancer genetics provider, and recommended changes in cancer prevention or surveillance strategies were collected. We evaluated the association between residential rurality and participation rate. Rurality was based on Rural-Urban Commuting Area (RUCA) codes, mapped to residential ZIP code. RUCA > 7 was classified as rural to capture the most rural participants. We fit multivariable log-binomial and linear regression models to estimate associations between rurality and participation, CCI, and MICRA, adjusting for age and genetic syndrome. Results: 223 people with LS and HBOC living in VT or NY were screened and eligible. Seventy-seven participants (35%) enrolled. Of the 146 patients who did not enroll, 32 (22%) are still pending enrollment, 21 (14%) declined, and 93 (64%) have not responded to outreach. Rurality was not a predictor of enrollment (RR adj = 0.93, 95% CI:0.63, 1.40). HBOC patients were more likely to enroll compared with LS patients (RR adj = 1.9, 95% CI:1.2, 2.8). Males were somewhat less likely to enroll (RR adj = 0.79, 95% CI: 0.40,1.6). Of enrolled participants, 69 (90%) were natal females and median age was 47 years (range 28-78). The majority of enrolled patients (n = 47, 65%) had not seen a genetics provider in >5 years. Mean MICRA scores were 29.1, higher than previously published scores after genetic testing. Mean CCI scores were 49.6, indicating lower care coordination. MICRA and CCI scores were similar among rural and non-rural patients. HBOC patients had higher CCI scores compared with LS patients. A change in clinical care was recommended for 59 participants (81%), including increased interval or new screening modality for 38 (53%), decrease in screening frequency for 16 (22%), referral to specialist for 26 (36%), and initiation of chemoprevention for 18 (25%). Conclusions: A substantial proportion of eligible patients enrolled in this opportunity for cancer genetics follow-up. Rurality was not associated with choice to enroll. The psychological impact after genetic testing and perception of care coordination were similar between rural and non-rural patients. Analyses demonstrate the high impact of cancer genetics clinic visits for patients with LS and HBOC. Clinical trial information: STUDY00002507/UVMCC2204.