Development and pilot testing of a training for bilingual community education professionals about hereditary breast and ovarian cancer among Latinas: ÁRBOLES Familiares

Lay Summary Latinas at high risk for hereditary breast and ovarian cancer (HBOC) have low rates of genetic counseling and testing. Latinas may not have ready access to services like genetic counseling and testing, which need special solutions. One solution can involve training community health workers to bridge the gap between Latinas and genetic specialists. We developed an online and in person training program (ÁRBOLES Familiares or Family Trees) for English-Spanish bilingual community health workers that teaches them how to help Latinas get access to genetic services. We tested this program with a small group of community health workers. After the program, their HBOC knowledge, genetic literacy, and confidence to help Latinas get access to genetic services had improved. Trainees also made suggestions to improve the program, which will be used to help future trainees expand their knowledge and skills to work with Latinas at risk of HBOC.

The Implementation, Diagnostic Yield and Clinical Outcome of Genetic Testing on an Inpatient Child and Adolescent Psychiatry Service

ObjectiveDiagnostic genetic testing is recommended for children with neurodevelopmental disorders (NDDs). However, many children with NDDs do not receive genetic testing. One approach to improve access to genetic services for these patients is to offer testing on the inpatient child and adolescent psychiatry (CAP) service.MethodsWe implemented systematic genetic testing on an inpatient CAP service by providing medical genetics education to CAP fellows. We compared the genetic testing rates pre- and post-education. We compared the diagnostic yield to previously published studies and the demographics of our cohort to inpatients who received genetic testing on other clinical services. We assessed rates of outpatient genetics follow-up post-discharge.ResultsThe genetic testing rate on the inpatient CAP service was 1.6% (2/125) before the educational intervention and 10.7% (21/197) afterwards (OR = 0.13, 95% CI = 0.015- 0.58, p = 0.0015). Diagnostic yield for patients on the inpatient service was 4.3% (1/23), lower than previously reported. However, 34.8% (8/23) of patients had variants of unknown significance (VUSs). 39.1% (9/23) of children who received genetic testing while inpatients were underrepresented minorities, compared to 7.7% (1/13) of patients who received genetic testing on other clinical services (OR = 7.35, CI = 0.81-365.00, p = 0.057). 43.5% of patients were lost to outpatient genetics follow-up.ConclusionMedical genetics education for fellows on an inpatient CAP service can improve genetic testing rates. Genetic testing for inpatients may primarily identify VUSs instead of well-known NDD risk variants. Genetic testing on the inpatient CAP service may improve access to genetic services for underrepresented minorities, but assuring outpatient follow-up can be challenging.

Improving access to genetic counseling services in an adolescent and young adult (AYA) clinic.

e13009 Background: Numerous studies have explored genetic testing access and benefits in adult and pediatric cancer patients, however little is known about the use of these services in adolescents and young adult (AYA) cancer patients. Routine genetic counseling may be particularly important for AYAs who are survivors of childhood cancer, as 8.5% of children with cancer have an inherited pathogenic germline variant. Genetic testing also helps reduce cancer morbidity and mortality in adolescents, as well as helps to guide cancer prevention strategies in family members. This study describes an innovative approach to fostering AYA patients’ access to genetic counseling services. Methods: AYA patients (ages 15-29) with a new or prior cancer diagnosis were referred to MD Anderson Cancer Center’s AYA multi-disciplinary clinic. Prior to their clinic visits, a genetic counselor reviewed relevant medical and family history information for patients seen from 7/12/18 through 1/11/19. For those at risk for a hereditary cancer syndrome, a recommendation for a genetic counseling referral was given to the AYA medical provider based on established guidelines, professional consensus, and clinical judgement guided by thorough literature reviews. Results: In total, 254 AYA patients’ charts were reviewed and 70 (27.6%) patients had histories that warranted a genetic counseling referral. Of these 70 patients, 53 (75.7%) were not previously seen by genetics. Of the 53 patients newly recommended to be referred, 29 (54.7%) had referrals placed. Of the 24 patients not referred, 17 did not attend their AYA visit, 5 refused the referral, and 2 were not referred for undetermined reasons. Of those referred, 10 completed genetic counseling, 14 are scheduled for counseling, 3 did not attend their appointment, and 2 had counseling at another institution. This process led to a 41.3% absolute increase in referrals to genetic counseling for those at risk for hereditary cancer syndromes. Conclusions: The described clinic workflow identified gaps in genetic referrals and showed an innovative approach to fostering AYA access to genetic services. This approach may be useful for other institutions interested in increasing access to genetic services for AYAs.