COVID-19 experiences predicting high anxiety and depression among a sample of BRCA1/BRCA2-positive women in the US During the COVID-19 pandemic, breast and ovarian cancer survivors experienced more anxiety and depression than before the pandemic. Studies have not investigated the similarities of this trend among BRCA1/2-positive women who are considered high risk for these cancers. The current study examines the impact of COVID-19 experiences on anxiety and depression in a sample of BRCA1/2-positive women in the U.S. 211 BRCA1/2-positive women from medically underserved backgrounds completed an online survey. Adjusted odds ratios (aORs) and 95% confidence intervals (CIs) were estimated using multivariable logistic regression for associations between COVID-19 experiences and self-reported anxiety and depression stratified by demographic factors. Overall, women who reported COVID-19 stigma or discrimination (aOR, 5.14, 95% CI [1.55, 17.0]) experienced significantly more depressive symptoms than women who did not report this experience. Racial/ethnic minority women caring for someone at home during COVID-19 were 3.70 times more likely (95% CI [1.01, 13.5]) to report high anxiety while non-Hispanic white women were less likely (aOR, 0.34, 95% CI [0.09, 1.30], p interaction = 0.011). To date, this is the first study to analyze anxiety and depression considering several COVID-19 predictors among BRCA1/2-positive women. Our findings can be used to inform future research and advise COVID-19-related mental health resources specific to these women. One in eight women will be diagnosed with breast cancer in their lifetime, but only 5–10% of these women have a BRCA1 and/or BRCA2 (BReast CAncer) genetic mutation1. Although rare, these mutations occur on dominant genes, indicative of a 50% inheritance rate, and therefore, occur within biological family units and often co-occur with other rarer cancer-specific mutations such as ATM, CDH1, CHEK2, PALB2, PTEN, STK11, and TP532. Due to these mutations, women have an increased risk of breast and ovarian cancers3, living with a cumulative breast cancer risk of 72% among BRCA1 and 69% among BRCA2 carriers4. Ovarian cancer risk is also elevated by the presence of these mutations, with one study finding that ovarian cancer occurs in an estimated 44% of BRCA1-positive women and 17% for those with BRCA24. When breast cancer does occur among this population, those with BRCA1 mutations are more likely to be diagnosed with triple-negative breast cancer, associated with higher risk of mortality5, while BRCA2-positive women are more likely to be diagnosed with hormone receptor-positive tumors6. The rate of recurrence has been approximated between 25 and 30% remains elevated among BRCA1/2-positive cancer survivors but remains highly dependent on individual clinical characteristics such as stage at diagnosis, treatment(s), and hormone receptor status6. Prophylactic treatment(s), such as hysterectomy, bilateral mastectomy, salpingectomy, and oophorectomy surgeries, remain the gold standard for preventing breast and ovarian cancers among women with these mutations7,8, but biannual ongoing surveillance (e.g., self-examination, magnetic resonance imaging, transvaginal ultrasound, mammogram, etc.) has also been recommended9.Recently, the coronavirus disease 2019 (COVID-19) caused delays in diagnostic investigation, surgical procedures, and routine surveillance for all women, due to limited in-person services10,11. Many of these limitations will have long-lasting consequences such as later-stage diagnoses and poorer clinical outcomes12, particularly for those with BRCA1/2 mutations, who rely on ongoing care for risk reduction and early detection. Individuals with cancer may be at greater risk of COVID-19 complications and death, worsened by older age (≥ 60 years), a history of smoking, obesity, hypertension, cardiovascular disease, and diabetes13,14,15. The COVID-19 pandemic is expected to have an increase in cancer-related mortality due to care disturbances across the cancer continuum, including but not limited to: (1) reduced access to care due to fear of infection, reallocation of resources, unemployment in the healthcare field, clinic shutdowns; (2) delayed routine care involving preventive screening, abnormal screening and symptom follow-up; (3) later-stage diagnosis indicative of reduced survival, fewer treatment options, and more invasive treatment; and (4) delayed or modified treatments like postponement of treatments and surgeries16. Cancer screening during the pandemic decreased 29–36% from pre-pandemic levels, and specifically, one study found an 86–94% decline in screening for breast and cervical cancers than 2017–2019 historical averages17. The impact of the COVID-19 pandemic on mental health outcomes among high-risk women, a population that already experience high rates of anxiety and depression18,19,20, has not yet been investigated.Coupled with COVID-19 pandemic stressors, the impending risk of cancer, the push for prophylactic surgeries, continuous surveillance, and the associated worry of affected family members have been associated with even more increases in adverse mental health symptomology8,21,22,23,24 and reduced health-related quality of life8,25,26. Adverse mental health symptomology is often heightened considering BRCA1/2 diagnoses and what they mean for their health in the future24,27,28, often compounded if testing is prompted by a cancer diagnosis29. Anxiety and depression are often reported among women with BRCA1/2 mutations, most commonly among those who are undergoing genetic testing19, undergoing prophylactic surgeries24, and/or during biannual surveillance appointments30. Although genetic testing offers preventive opportunities and the knowledge for risk reduction and/or management, it has also been linked to increased anxiety, stress, and depressive symptomology18,24, trending at varying levels throughout this process.ObjectivesThe current study aims to determine the association between several COVID-19 pandemic experiences and anxiety and depression symptomology, while adjusting for covariates among BRCA1/2-positive US women from medically underserved backgrounds. Secondarily, we stratified these associations by income status and race/ethnicity to identify high-risk groups of mutation carriers. The importance of this paper remains unprecedented, as those with increased risk for breast and ovarian cancer due to genetic mutations may have experienced limited preventive, diagnostic, and/or treatment-related care as the COVID-19 pandemic continues into 2021 and beyond.Participants were recruited through national, online support groups: BRCA1 BRCA2 Genetic Ovarian & Breast Cancer Gene (~ 11,000 members), BRCA Genetic Sisters Support Group (~ 6000 members), BRCA1 & BRCA2 Support Group (~ 3300 members), BRCA Strong (~ 2500 members), BRCA Sisterhood of Hope (~ 1400 members), Facing Our Risk for Cancer Empowered (FORCE) message boards, Understanding BRCA (~ 1500 members), BRCA Advanced & Other Hereditary Cancers Journal Club (~ 3200 members), and BRCA Preventive Mastectomy & Hysterectomy Support Group (~ 900 members) from December 2020 to March 2021. One study recruitment post was posted per day within each group (BRCA Strong only allowed one post per week), with written permission obtained from group moderators prior to posting. The post consisted of a brief announcement introducing the study, eligibility criteria, and a link to an anonymous survey. Participants were eligible if they were 18 years or older, female, lived in the US, could read/speak in English, have undergone and tested positive for either (or both) BRCA1 and/or BRCA2 genetic mutations within the past 5 years, and identify with at least one medically underserved population (i.e., racial, ethnic, and/or sexual minority, person with a physical disability, those with low income, first-generation immigrant, and/or those who are chronically ill). By clicking the brief study announcement, potential participants were rerouted to an anonymous screener survey to determine eligibility, and those fitting criteria were rerouted to the full online survey via REDCap (Research Electronic Data Capture) hosted at the Johns Hopkins Bloomberg School of Public Health (JHSPH)31,32. Survey questions prompted participants to rate anxiety, depression, COVID-19 impact, demographic characteristics, clinical cancer and genetic testing information, prophylactic surgery and ongoing surveillance history, body satisfaction, perceived worry of cancer, cancer empowerment, health-related quality of life, discrimination, and healthcare access. Participants who completed the online survey were compensated with a $20 Amazon e-gift card. This study was approved and conducted according to the ethical standards of the JHSPH Institutional Review Board (IRB) and informed consent was obtained from all participants.Model variablesPredictor variablesTo measure the impact of COVID-19, the Pandemic Stress Index33 was utilized within the current study. The items involving COVID-19 experiences were as follows: changes in life due to COVID-19, diagnosed with COVID-19, fear of getting or spreading COVID-19, worrying about loved ones, quarantining or isolation, caring for someone at home, working from home, lost job, changes in healthcare services, stigma or discrimination, personal financial loss, frustration/boredom, not having basic supplies, more depression, more anxiety, sleep issues, increased substance use, change in sexual activity, loneliness, confusion about COVID-19, giving to the greater good by following COVID-19 mandates, and getting emotional or financial support from loved ones. The COVID-19 experiential items were entered as predictors, with one predictor in each model. Predictors were originally dichotomous with either ‘no’ did not experience (referent) or ‘yes’ experienced the COVID-19-related prompt during the pandemic. Items ranged from general COVID-19 occurrences (e.g., diagnosed with COVID-19, quarantining, working from home, etc.), health-related prompts (e.g., anxiety, depression, substance use, frustration/boredom, etc.), or resource reallocation (e.g., changing travel plans, financial loss, needing financial support, etc.) (Supplementary Information).Outcome assessmentsTo measure anxiety symptomology, the Generalized Anxiety Disorder 7-item (GAD-7) scale34. The GAD-7 is a 7-item, 4-point Likert scale prompting, ‘How often have you been bothered by the following over the past 2 weeks?’ ranging from 0 (not at all sure) to 3 (nearly every day). Responses were added to create a final score which ranged from zero to 21 with clinical cutoffs for mild (zero to 5), moderate (six to 10), and severe anxiety (11+)34. The GAD-7 has a sensitivity of 89% and specificity of 82%, utilized as a screening tool to recommend further evaluation for those scoring in the moderate to severe range34. In the general population, the GAD-7 reflects good reliability (α = 0.89)35 and excellent within the current sample (α = 0.93). For the purposes of this study, clinical cutoffs were dichotomized for mild (referent) and moderate/severe anxiety. Moderate/severe anxiety will be discussed as ‘high anxiety’.Depressive symptomology was measured using the Patient Health Questionnaire (PHQ-9) Depression Assessment36. The PHQ-9 is a 9-item, 4-point Likert scale asking, ‘Over the last 2 weeks, how often have you been bothered by the following problems?’ ranging from 0 (not at all) to 3 (nearly every day). Responses were combined to create a total score which ranged from zero to 27 with clinical cutoffs for minimal (zero to four), mild (five to nine), moderate (10–14), moderately severe (15–19), and severe depression (20–27)36. The PHQ-9 has been used in the general population, psychiatric populations, and obstetric-gynecologic populations, with an average sensitivity of 88% and specificity of 88% for major depression36. In the general population, the PHQ-9 has good reliability (α = 0.86–0.89) and excellent reliability (α = 0.90) within the current sample. Within the current study, clinical cutoffs were dichotomized for minimal/mild (referent) and moderate/moderately severe/severe depression. Moderate/moderately severe/severe depression will be discussed as ‘more depressive symptoms’.Covariates and stratificationsThe following variables were included as covariates across all models: age at survey completion, number of comorbid conditions, years since genetic testing, education, marital status, race/ethnicity, income status, cancer survivor status (has a history of cancer versus no cancer history), and geographic location. Age at survey completion, number of comorbid conditions (including a past cancer diagnosis) and years since genetic testing were treated as continuous. Survivor/control status was originally dichotomous and remained as such in analysis (no cancer history [referent], cancer survivor). Race and ethnicity were two separate variables. The race variable was polynomial (American Indian or Alaska Native, Asian, Native Hawaiian or other Pacific Islander, Black or African American, non-Hispanic white (NHW), biracial or multiracial) and ethnicity was dichotomous (Hispanic or Latino, not Hispanic or Latino). These variables were combin
https://www.nature.com/articles/s41598-021-04353-x
COVID-19 experiences predicting high anxiety and depression among a sample of BRCA1/BRCA2-positive women in the US
