The Black and African American Connections to Parkinson's Disease (BLAAC PD) study protocol.

Determining the genetic contributions to Parkinson's disease (PD) across diverse ancestries is a high priority as this work can guide therapeutic development in a global setting. The genetics of PD spans the etiological risk spectrum, from rare, highly deleterious variants linked to monogenic forms with Mendelian patterns of inheritance, to common variation involved in sporadic disease. A major limitation in PD genomics research is lack of racial and ethnic diversity. Enrollment disparities have detrimental consequences on the generalizability of results and exacerbate existing inequities in care. The Black and African American Connections to Parkinson's Disease (BLAAC PD) study is part of the Global Parkinson's Genetics Program, supported by the Aligning Science Across Parkinson's initiative. The goal of the study is to investigate the genetic architecture underlying PD risk and progression in the Black and/or African American populations. This cross-sectional multicenter study in the United States has a recruitment target of up to 2,000 individuals with PD and up to 2,000 controls, all of Black and/or African American ancestry. The study design incorporates several strategies to reduce barriers to research participation. The multifaceted recruitment strategy aims to involve individuals with and without PD in various settings, emphasizing community outreach and engagement. The BLAAC PD study is an important first step toward informing understanding of the genetics of PD in a more diverse population.

Patient Demographics and the Utilization of a Novel 3-Anatomic-Site Testing Panel Including Rectal Self-Collection as Compared With Usual Care Testing.

BACKGROUND: At Kaiser Permanente Mid-Atlantic States, we designed a 3-anatomic-site panel (urine, oropharynx, and rectum) with a self-collect feature for rectal sites. We compared the proportion tested at each anatomic site, demographic factors, and HIV status between those who received the 3-site panel versus usual care. METHODS: Patients entered our laboratories without a prior appointment and underwent urine (usual care [patient collected]), oropharynx (laboratory technician collected), and rectal site (patient collected) testing. Providers recommended the panel to their patients. Patients then had the choice to accept or to reject the panel. Multivariate and logistic regressions were conducted to explore the relationship of age, sex, race, and HIV status with Neisseria gonorrhoeae (GC) and Chlamydia trachomatis (CT) test results as well as the type of testing (3-site panel vs. usual care testing) received. RESULTS: A total of 145,854 patients received usual care testing as compared with 9227 who received the panel. For those who underwent usual care testing, 4.0% tested positive for CT and 0.85% for GC. For those who received the panel, 9.1% tested positive for CT and 6.4% for GC. Those who received the 3-site panel were more likely to test positive for CT (odds ratio [OR], 2.70; confidence interval [CI], 2.46-2.97) and GC (OR, 4.00; CI, 3.59-4.64). White patients were the most likely to receive the panel compared with Black patients (OR, 3.14; CI, 2.96-3.33). Patients with HIV had greater odds of undergoing the panel (OR, 15.62; CI, 14.67-16.64) and of testing positive for CT (OR, 1.27; CI, 1.07-1.51) and GC (OR, 1.39; CI, 1.14-1.68). CONCLUSIONS: Patients who received the panel had higher odds of testing positive for CT and GC compared with patients with usual testing. Physician training may address the racial and sex differences observed in the panel enrollment and increase utilization. Self-collection for rectal sites should lead to higher detection of CT and GC.

Demographic differences in the utilization of clinical and direct-to-consumer genetic testing.

Genetic testing has increased over the last decade due to growth in the number of clinical and direct-to-consumer (DTC) tests. However, there is uncertainty about how increased DTC genetic testing affects disparities. Between November 2017 and February 2018, a nationwide electronic survey on experiences with genetic testing was conducted among adult Kaiser Permanente members. Logistic regression was used to calculate adjusted odds ratios and 95% confidence intervals comparing receipt of clinical and DTC genetic testing between groups by race and ethnicity. Invitations were sent to 57,331 members, and 10,369 surveys were completed. 22% of respondents had received genetic testing (17% DTC and 5% provider-ordered). Non-Hispanic Whites were more likely than other groups to have clinical genetic testing but were similar to Hispanics and non-Hispanic Blacks in rates of DTC genetic testing. Among those who received any health-related genetic test, 10% reported abnormal results. Of these, non-Hispanic Whites were more likely than other racial/ethnic groups to speak to a medical professional about abnormal results. Results suggest that racial/ethnic disparities in the use of clinical genetic services persist. Additional research is needed to identify lessons learned from DTC genetic testing that may increase equity in the use of clinical genetic services.

COVID-19 and Adolescent Outpatient Mental Health Service Utilization.

OBJECTIVE: The COVID-19 pandemic created challenges in accessing mental health (MH) services when adolescent well-being declined. Still, little is known about how the COVID-19 pandemic affected outpatient MH service utilization for adolescents. METHODS: Retrospective data were collected from electronic medical records of adolescents aged 12-17 years at Kaiser Permanente Mid-Atlantic States, an integrated health care system from January 2019 to December 2021. MH diagnoses included anxiety, mood disorder/depression, anxiety and mood disorder/depression, attention-deficit/hyperactivity disorder, or psychosis. We used interrupted time series analysis to compare MH visits and psychopharmaceutical prescribing before and after the COVID-19 onset. Analyses were stratified by demographics and visit modality. RESULTS: The study population of 8121 adolescents with MH visits resulted in a total of 61,971 (28.1%) of the 220,271 outpatient visits associated with an MH diagnosis. During 15,771 (7.2%) adolescent outpatient visits psychotropic medications were prescribed. The increasing rate of MH visits prior to COVID-19 was unaffected by COVID-19 onset; however, in-person visits declined by 230.5 visits per week (P < .001) from 274.5 visits per week coupled with a rise in virtual modalities. Rates of MH visits during the COVID-19 pandemic differed by sex, mental health diagnosis, and racial and ethnic identity. Psychopharmaceutical prescribing during MH visits declined beyond expected values by a mean of 32.8 visits per week (P < .001) at the start of the COVID-19 pandemic. CONCLUSIONS: A sustained switch to virtual visits highlights a new paradigm in care modalities for adolescents. Psychopharmaceutical prescribing declined requiring further qualitative assessments to improve the quality of access for adolescent MH.

Family Structure and Adolescent Mental Health Service Utilization During the COVID-19 Pandemic.

PURPOSE: This study evaluated the relationship between sociodemographic factors including family structure and mental health service (MHS) utilization before and during the COVID-19 pandemic. We also investigated the moderation effects of the COVID-19 pandemic on MHS utilization. METHODS: Our retrospective cohort study analyzed adolescents aged 12-17 years with a mental health diagnosis as identified in the electronic medical record enrolled in Kaiser Permanente Mid-Atlantic States in Maryland and Virginia, a comprehensive integrated health system. We used logistic regression models with an interaction term for the COVID-19 pandemic year to determine the relationship between family structure and adolescent MHS utilization ≥ one outpatient behavioral health visit within the measurement year, while adjusting for age, chronic medical condition (= physical illness lasting > 12 months), mental health condition, race, sex, and state of residence. RESULTS: Among 5,420 adolescents, only those in two-parent households significantly increased MHS utilization during COVID-19 compared to the prepandemic year (McNemar's χ2 = 9.24, p < .01); however, family structure was not a significant predictor. Overall, the odds of adolescents using MHS were associated with a 12% increase during COVID-19 (odds ratio 1.12, 95% confidence interval [CI]: 1.02-1.22, p < .01). Higher odds of using MHS was associated with chronic medical condition (adjusted odds ratio = 1.15; 95% CI: 1.05-1.26, p < .01) and with White adolescents compared to all racial/ethnic minorities. The odds ratio of females using MHS compared to their male counterparts increased by 63% (ratio of adjusted odds ratio = 1.63; 95% CI: 1.39-1.91, p < .01) during the COVID-19 pandemic. DISCUSSION: Individual-level demographic factors served as predictors of MHS utilization with effects moderated by COVID-19.

Return of Research-Related Genetic Test Results and Genetic Discrimination Concerns: Facilitators and Barriers of Genetic Research Participation in Diverse Groups.

BACKGROUND: Most genetics studies lack the diversity necessary to ensure that all groups benefit from genetic research. OBJECTIVES: To explore facilitators and barriers to genetic research participation. METHODS: We conducted a survey on genetics in research and healthcare from November 15, 2017 to February 28, 2018 among adult Kaiser Permanente (KP) members who had been invited to participate in the KP biobank (KP Research Bank). We used logistic regression to calculate adjusted odds ratios (ORs) and 95% confidence intervals (CIs) comparing the willingness to participate in genetic research under different return of results scenarios and genetic discrimination concerns between groups, according to their demographic characteristics. RESULTS: A total of 57,331 KP members were invited to participate, and 10,369 completed the survey (18% response rate). Respondents were 65% female, 44% non-Hispanic White (NH White), 22% Asian/Native Hawaiian or other Pacific Islander (Asian/PI), 19% non-Hispanic Black (NH Black), and 16% Hispanic. Respondents willing to participate in genetic research ranged from 22% with no results returned to 87% if health-related genetic results were returned. We also found variation by race/ethnicity; when no results were to be returned, Asian/PIs, Hispanics, and NH Blacks were less likely to want to participate than NH Whites (p < 0.05). However, when results were returned, disparities in the willingness to participate disappeared for NH Blacks and Hispanics. Genetic discrimination concerns were more prevalent in Asian/PIs, Hispanics, and NH Blacks than in NH Whites (p < 0.05). CONCLUSIONS: Policies that prohibit the return of results and do not address genetic discrimination concerns may contribute to a greater underrepresentation of diverse groups in genetic research.