Identifying factors and causal chains associated with optimal implementation of Lynch syndrome tumor screening: An application of coincidence analysis.

PURPOSE: This study compared Lynch syndrome universal tumor screening (UTS) across multiple health systems (some of which had two or more distinct UTS programs) to understand multi-level factors that may impact the successful implementation of complex programs. METHODS: Data from 66 stakeholder interviews were used to conduct multi-value coincidence analysis (mv-CNA) and identify key factors that consistently make a difference in whether UTS programs were implemented and optimized at the system level. RESULTS: The selected CNA model revealed combinations of conditions that distinguish 4 optimized UTS programs, 10 non-optimized programs, and 4 systems with no program. Fully optimized UTS programs had both a maintenance champion and a positive inner setting. Two independent paths were unique to non-optimized programs: 1) positive attitudes and a mixed inner setting, or 2) limited planning & engaging among stakeholders. Negative views about UTS evidence or lack of knowledge about UTS led to a lack of planning and engaging, which subsequently prevented program implementation. CONCLUSION: The model improved our understanding of program implementation in health care systems and informed the creation of a toolkit to guide UTS implementation, optimization, and changes. Our findings and toolkit may serve as a use case to increase the successful implementation of other complex precision health programs.

Long COVID awareness and receipt of medical care: a survey among populations at risk for disparities.

Introduction: The COVID-19 pandemic has been characterized by disparities in disease burden and medical care provision. Whether these disparities extend to long COVID awareness and receipt of medical care is unknown. We aimed to characterize awareness of long COVID and receipt of medical care for long COVID symptoms among populations who experience disparities in the United States (US). Methods: We conducted a cross-sectional survey among a national sample of US adults between January 26-February 5, 2023. We surveyed approximately 2,800 adults drawn from the Ipsos probability-based KnowledgePanel® who identify as White, Black, or Hispanic, with over-sampling of Black, Hispanic, and Spanish-proficient adults. Awareness of long COVID was assessed with the question, "Have you heard of long COVID? This is also referred to as post-COVID, Long-haul COVID, Post-acute COVID-19, or Chronic COVID." Respondents reporting COVID-19 symptoms lasting longer than 1 month were classified as having long COVID and asked about receipt of medical care. Results: Of the 2,828 respondents, the mean age was 50.4 years, 52.8% were female, 40.2% identified as Hispanic, 29.8% as Black, and 26.7% as White. 18% completed the survey in Spanish. Overall, 62.5% had heard of long COVID. On multivariate analysis, long COVID awareness was lower among respondents who identified as Black (OR 0.64; 95% CI 0.51, 0.81), Hispanic and completed the survey in English (OR 0.59; 95% CI 0.46, 0.76), and Hispanic and completed the survey in Spanish (OR 0.31, 95% C.I. 0.23, 0.41), compared to White respondents (overall p < 0.001). Long COVID awareness was also associated with educational attainment, higher income, having health insurance, prior history of COVID-19 infection, and COVID-19 vaccination. Among those reporting symptoms consistent with long COVID (n = 272), 26.8% received medical care. Older age, longer symptom duration and greater symptom impact were associated with receipt of medical care for long COVID symptoms. Of those who received care, most (77.8%) rated it as less than excellent on a 5-point scale. Discussion: This survey reveals limited awareness of long COVID and marked disparities in awareness according to race, ethnicity, and language. Targeted public health campaigns are needed to raise awareness.

Multiple myeloma incidence, mortality, and survival differences at the intersection of sex, age, and race/ethnicity: A comparison between Puerto Rico and the United States SEER population.

BACKGROUND: Multiple myeloma (MM) survival has increased during the last decades due to the introduction of new therapies. We investigated the intersectionality among age, sex, and race/ethnicity to better understand the pattern of MM incidence, mortality, and survival. METHODS: Puerto Rico (PR) Central Cancer Registry and the United States of America (US) Surveillance, Epidemiology, and End Results (SEER) Program databases were used. We analyzed MM incidence and mortality trends from 2001 to 2019 using Joinpoint regression models to calculate annual percent change (APC). Age-standardized rate ratios (SRR) for incidence and mortality were used to compare PR with US SEER racial/ethnic groups during 2015-2019. Five-year survival analyses were also performed stratified by age and sex. RESULTS: Regardless of age and race/ethnicity, males had higher MM incidence and mortality rates than females. PR had a higher increase in incidence rates of MM than other ethnic groups, regardless of sex and age (PR APC = 4.3 among males <65, 3.1 among males ≥65, 6.3 among females <65, and 2.6 among females ≥65 years old). No significant change in mortality APCs (p > 0.05) was observed in PR when stratified by age or sex while other groups showed a decrease. Among males < 65 years, PR had significantly higher incidence rates than non-Hispanic Whites (NHW), and US Hispanics (USH). However, among both males and females ≥ 65 years, PR had significantly lower MM mortality rates than NHW, non-Hispanic Blacks (NHB), USH, and US Overall. In terms of survival, PR showed the lowest 5-year overall survival among males < 65 years (54.6%, 95% CI: 47.2-61.5) and males ≥ 65 years (34.5%, 95% CI: 29.2-39.9) but not among females. CONCLUSION: The incidence of MM in PR increased significantly over the study period, particularly among younger women. Despite the introduction of new therapies, mortality rates in PR have remained stable while other ethnic groups show significant decreases among all intersections of sex and age.

"Go ahead and screen" - advice to healthcare systems for routine lynch syndrome screening from interviews with newly diagnosed colorectal cancer patients.

BACKGROUND: Lynch syndrome (LS) is the most common cause of inherited colorectal cancer (CRC). Universal tumor screening (UTS) of newly diagnosed CRC cases is recommended to aid in diagnosis of LS and reduce cancer-related morbidity and mortality. However, not all health systems have adopted UTS processes and implementation may be inconsistent due to system and patient-level complexities. METHODS: To identify barriers, facilitators, and suggestions for improvements of the UTS process from the patient perspective, we conducted in-depth, semi-structured interviews with patients recently diagnosed with CRC, but not screened for or aware of LS. Patients were recruited from eight regionally diverse US health systems. Interviews were conducted by telephone, 60-minutes, audio-recorded, and transcribed. An inductive, constant comparative analysis approach was employed.  RESULTS: We completed 75 interviews across the eight systems. Most participants were white (79%), about half (52%) were men, and the mean age was 60 years. Most self-reported either no (60%) or minimal (40%) prior awareness of LS. Overall, 96% of patients stated UTS should be a routine standard of care for CRC tumors, consistently citing four primary motivations for wanting to know their LS status and engage in the process for LS identification: "knowledge is power"; "family knowledge"; "prevention and detection"; and "treatment and surveillance." Common concerns pertaining to the process of screening for and identifying LS included: creating anticipatory worry for patients, the potential cost and the accuracy of the genetic test, and possibly having one's health insurance coverage impacted by the LS diagnosis. Patients suggested health systems communicate LS results in-person or by phone from a trained expert in LS; offer proactive verbal and written education about LS, the screening steps, and any follow-up surveillance recommendations; and support patients in communicating their LS screening to any of their blood relatives. CONCLUSION: Our qualitative findings demonstrate patients with CRC have a strong desire for healthcare systems to regularly implement and offer UTS. Patients offer key insights for health systems to guide future implementation and optimization of UTS and other LS screening programs and maximize diagnosis of individuals with LS and improve cancer-related surveillance and outcomes. TRIAL REGISTRATION: Not available: not a clinical trial.

Examining sociodemographic correlates of opioid use, misuse, and use disorders in the All of Us Research Program.

BACKGROUND: The All of Us Research Program enrolls diverse US participants which provide a unique opportunity to better understand the problem of opioid use. This study aims to estimate the prevalence of opioid use and its association with sociodemographic characteristics from survey data and electronic health record (EHR). METHODS: A total of 214,206 participants were included in this study who competed survey modules and shared EHR data. Adjusted logistic regressions were used to explore the associations between sociodemographic characteristics and opioid use. RESULTS: The lifetime prevalence of street opioids was 4%, and the nonmedical use of prescription opioids was 9%. Men had higher odds of lifetime opioid use (aOR: 1.4 to 3.1) but reduced odds of current nonmedical use of prescription opioids (aOR: 0.6). Participants from other racial and ethnic groups were at reduced odds of lifetime use (aOR: 0.2 to 0.9) but increased odds of current use (aOR: 1.9 to 9.9) compared with non-Hispanic White participants. Foreign-born participants were at reduced risks of opioid use and diagnosed with opioid use disorders (OUD) compared with US-born participants (aOR: 0.36 to 0.67). Men, Younger, White, and US-born participants are more likely to have OUD. CONCLUSIONS: All of Us research data can be used as an indicator of national trends for monitoring the prevalence of receiving prescription opioids, diagnosis of OUD, and non-medical use of opioids in the US. The program employs a longitudinal design for routinely collecting health-related data including EHR data, that will contribute to the literature by providing important clinical information related to opioids over time. Additionally, this data will enhance the estimates of the prevalence of OUD among diverse populations, including groups that are underrepresented in the national survey data.

A picture is worth a thousand words: advancing the use of visualization tools in implementation science through process mapping and matrix heat mapping.

BACKGROUND: Identifying key determinants is crucial for improving program implementation and achieving long-term sustainment within healthcare organizations. Organizational-level complexity and heterogeneity across multiple stakeholders can complicate our understanding of program implementation. We describe two data visualization methods used to operationalize implementation success and to consolidate and select implementation factors for further analysis. METHODS: We used a combination of process mapping and matrix heat mapping to systematically synthesize and visualize qualitative data from 66 stakeholder interviews across nine healthcare organizations, to characterize universal tumor screening programs of all newly diagnosed colorectal and endometrial cancers and understand the influence of contextual factors on implementation. We constructed visual representations of protocols to compare processes and score process optimization components. We also used color-coded matrices to systematically code, summarize, and consolidate contextual data using factors from the Consolidated Framework for Implementation Research (CFIR). Combined scores were visualized in a final data matrix heat map. RESULTS: Nineteen process maps were created to visually represent each protocol. Process maps identified the following gaps and inefficiencies: inconsistent execution of the protocol, no routine reflex testing, inconsistent referrals after a positive screen, no evidence of data tracking, and a lack of quality assurance measures. These barriers in patient care helped us define five process optimization components and used these to quantify program optimization on a scale from 0 (no program) to 5 (optimized), representing the degree to which a program is implemented and optimally maintained. Combined scores within the final data matrix heat map revealed patterns of contextual factors across optimized programs, non-optimized programs, and organizations with no program. CONCLUSIONS: Process mapping provided an efficient method to visually compare processes including patient flow, provider interactions, and process gaps and inefficiencies across sites, thereby measuring implementation success via optimization scores. Matrix heat mapping proved useful for data visualization and consolidation, resulting in a summary matrix for cross-site comparisons and selection of relevant CFIR factors. Combining these tools enabled a systematic and transparent approach to understanding complex organizational heterogeneity prior to formal coincidence analysis, introducing a stepwise approach to data consolidation and factor selection.

Patient and provider-level drivers of healthcare utilization related to a diagnosis of a precancerous condition: monoclonal gammopathy of undetermined significance (MGUS).

PURPOSE: Monoclonal gammopathy of undetermined significance (MGUS) is the precursor of multiple myeloma. This qualitative study described patient (n = 14) experiences and healthcare providers' (n = 8) opinions and practices concerning care for patients with MGUS in the US. METHODS: Semi-structured, in-depth interviews were analyzed using thematic analysis. RESULTS: We identified six overarching themes related to the care pathway for patients with MGUS: (1) Process of MGUS diagnosis, (2) Providers' explanations, (3) Patients' understanding, (4) Impact of the diagnosis, (5) Follow-up/management, and (6) Factors influencing healthcare utilization. Patients demonstrated a basic understanding of MGUS. However, some patients felt anxiety around the diagnosis, which may affect other aspects of their lives. Non-hematologist providers report having less MGUS-specific knowledge. Older age, high-risk MGUS, and insurance coverage/healthcare costs influenced healthcare utilization. CONCLUSION: Patients with MGUS may have difficulty processing this premalignant diagnosis. Non-hematologist providers may have gaps in knowledge around specific care for patients with MGUS.

Multimorbidity in patients with monoclonal gammopathy of undetermined significance.

Monoclonal gammopathy of undetermined significance (MGUS), a precursor to multiple myeloma, is present in over 5% of adults aged 70 and older, a population with a high prevalence of multimorbidity. MGUS is often diagnosed incidentally when patients seek care for unrelated conditions. Our study sought to examine patterns of multimorbidity among MGUS patients, as overall health may impact patient care and the prioritization of MGUS surveillance. We examined patterns of comorbidities in 429 patients diagnosed with MGUS (2007-2015) and 1287 matched controls. Twenty-seven conditions were defined at diagnosis/index date using algorithms developed by the Centers for Medicare and Medicaid Chronic Conditions Warehouse. Patterns of common comorbidities were identified individually, in dyads and triads, and compared between MGUS cases and controls. We conducted a latent class analysis to identify comorbidity patterns among cases only. We also examined comorbidity patterns among a subset of 32 MGUS cases who progressed to cancer during the study period. The most common comorbidities among both MGUS cases and controls included hypertension and hyperlipidemia. Anemia (cases: 43%; controls: 16%) and chronic kidney disease (CKD; cases: 36%; controls: 18%), and dyads and triads containing those conditions, were more common among cases. Latent class analysis identified three classes of comorbidity among MGUS cases: hypertension-hyperlipidemia plus anemia and CKD (31%); low comorbidity burden (17%); and hypertension-hyperlipidemia alone (52%). The higher prevalence among cases of anemia and CKD, which may be involved in the pathogenesis of, or surveillance for, MGUS, warrants additional investigation.

Trends and Factors Associated with Fecal Occult Blood Test Utilization among Hispanic Adults in Puerto Rico and the United States: BRFSS 2012-2020.

Identifying factors associated with colorectal cancer screening utilization is important to guide colorectal cancer prevention and control programs. We evaluated trends and factors associated with previous-year fecal occult blood test (FOBT) use among Hispanic adults living in Puerto Rico and the U.S. mainland. Using data from the Behavioral Risk Factor Surveillance System (2012-2020), trends in FOBT use were analyzed using joinpoint regression to estimate annual percentage change (APC). Logistic regression stratified by location identified factors associated with FOBT use. FOBT was more common among Hispanic adults ages 50 to 75 years living in Puerto Rico than in the U.S. mainland [Puerto Rico: 20.5%[2012] to 45.6%[2020], APC = 11.4%; U.S. mainland: 9.9%[2012] to 16.7%[2020], APC = 5.9%]. Factors inversely associated with FOBT use were similar in Puerto Rico and the U.S. mainland, including lack of health insurance, not having a personal doctor, having a checkup >12 months ago, and not being able to see a doctor due to cost, as were factors associated with higher FOBT use, including older age, retirement, or having two or more chronic diseases. Among Hispanics living in the U.S. mainland, lack of exercise and less education were inversely associated with FOBT. Factors related to poor access to healthcare were associated with lower use of FOBT among Hispanics. Efforts to improve colorectal cancer screening in Hispanics are necessary to address health disparities across the colorectal cancer care continuum. PREVENTION RELEVANCE: Colorectal cancer screening reduces cancer incidence and mortality. All screening modalities, including less invasive FOBT tests, are underutilized, especially in non-White and low-income populations. Evaluation of trends and factors associated with the increase in the use of colorectal cancer screening can inform programs to address the lack of screening among racial minorities.

Circulating immune markers and risks of non-Hodgkin lymphoma subtypes: A pooled analysis.

Although prediagnostic circulating concentrations of the immune activation markers soluble CD27 (sCD27), sCD30 and chemokine ligand-13 (CXCL13) have been associated with non-Hodgkin lymphoma (NHL) risk, studies have been limited by sample size in associations with NHL subtypes. We pooled data from eight nested case-control studies to investigate subtype-specific relationships for these analytes. Using polytomous regression, we calculated odds ratios (ORs) with 95% confidence intervals (CIs) relating study-specific analyte tertiles to selected subtypes vs controls (n = 3310): chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL; n = 623), diffuse large B cell lymphoma (DLBCL; n = 621), follicular lymphoma (FL; n = 398), marginal zone lymphoma (MZL; n = 138), mantle cell lymphoma (MCL; n = 82) and T cell lymphoma (TCL; n = 92). We observed associations with DLBCL for elevated sCD27 [OR for third vs first tertile (ORT3 ) = 2.2, 95% CI = 1.6-3.1], sCD30 (ORT3  = 2.0, 95% CI = 1.6-2.5) and CXCL13 (ORT3  = 2.3, 95% CI = 1.8-3.0). We also observed associations with sCD27 for CLL/SLL (ORT3  = 3.3, 95% CI = 2.4-4.6), MZL (ORT3  = 7.7, 95% CI = 3.0-20.1) and TCL (ORT3  = 3.4, 95% CI = 1.5-7.7), and between sCD30 and FL (ORT3  = 2.7, 95% CI = 2.0-3.5). In analyses stratified by time from phlebotomy to case diagnosis, the sCD27-TCL and all three DLBCL associations were equivalent across both follow-up periods (<7.5, ≥7.5 years). For other analyte-subtype comparisons, associations were stronger for the follow-up period closer to phlebotomy, particularly for indolent subtypes. In conclusion, we found robust evidence of an association between these immune markers and DLBCL, consistent with hypotheses that mechanisms related to immune activation are important in its pathogenesis. Our other findings, particularly for the rarer subtypes MZL and TCL, require further investigation.

A prospective analysis of red blood cell membrane polyunsaturated fatty acid levels and risk of non-Hodgkin lymphoma.

Published studies report inconsistent associations of polyunsaturated fatty acid (PUFA) intake with non-Hodgkin lymphoma (NHL) risk. We conducted a nested case-control study in Nurses' Health Study and Health Professionals Follow-Up Study participants to evaluate a hypothesis of inverse association of pre-diagnosis red blood cell (RBC) membrane PUFA levels with risk of NHL endpoints. We confirmed 583 NHL cases and matched 583 controls by cohort/sex, age, race and blood draw date/time. We estimated odds ratios (OR) and 95% confidence intervals (CI) for risk of NHL endpoints using logistic regression. RBC PUFA levels were not associated with all NHL risk; cis 20:2n-6 was associated with follicular lymphoma risk (OR [95% CI] per one standard deviation increase: 1.35 [1.03-1.77]), and the omega-6/omega-3 PUFA ratio was associated with diffuse large B-cell lymphoma risk (2.33 [1.23-4.43]). Overall, PUFA did not demonstrate a role in NHL etiology; the two unexpected positive associations lack clear biologic explanations.

Differences in Hospital, Emergency Room and Outpatient Visits Among Adults With and Without Monoclonal Gammopathy of Undetermined Significance.

INTRODUCTION: This study evaluated the impact of receiving a monoclonal gammopathy of undetermined significance (MGUS) diagnosis on healthcare utilization from patients at a community-based multispecialty provider organization. METHODS: A cohort of patients with MGUS (n = 429) were matched on sex, age, and length of enrollment to a cohort of patients without MGUS (n = 1286). Healthcare utilization was assessed: 1-12 months before, 1 month before and after, and 1-12 months after diagnosis/index date. Multivariable conditional Poisson models compared change in utilization of each service in patients with and without MGUS. RESULTS: During the 2 months around diagnosis/index date, the rates of emergency room, hospital and outpatient visits were higher for patients with MGUS than patients without MGUS. In the year before MGUS diagnosis, the association was still elevated, although attenuated. CONCLUSION: Understanding the care of MGUS patients is important given that multiple myeloma patients with a pre-existing MGUS diagnosis may have a better prognosis.

Trends in breast and prostate cancer screening and diagnostic procedures during the COVID-19 pandemic in central Massachusetts.

PURPOSE: We calculated rates of breast and prostate cancer screening and diagnostic procedures performed during the COVID-19 pandemic through December 2021 compared to the same months in 2019 in a large healthcare provider group in central Massachusetts. METHODS: We included active patients of the provider group between January 2019 and December 2021 aged 30-85 years. Monthly rates of screening mammography and digital breast tomosynthesis, breast MRI, total prostate specific antigen (PSA), and breast or prostate biopsy per 1,000 people were compared by year overall, by age, and race/ethnicity. Completed procedures were identified by relevant codes in electronic health record data. RESULTS: Rates of screening mammography, tomosynthesis, and PSA testing reached the lowest levels in April-May 2020. Breast cancer screening rates decreased 43% in March and 99% in April and May 2020, compared to 2019. Breast cancer screening rates increased gradually beginning in June 2020 through 2021, although more slowly in Black and Hispanic women and in women aged 75-85. PSA testing rates decreased 34% in March, 78% in April, and 53% in May 2020, but rebounded to pre-pandemic levels by June 2020; trends were similar across groups defined by age and race/ethnicity. CONCLUSION: The observed decline in two common screening procedures during the COVID-19 pandemic reflects the impact of the pandemic on cancer early detection and signals potential downstream effects on the prognosis of delayed cancer diagnoses. The slower rate of return for breast cancer screening procedures in certain subgroups should be investigated to ensure all women return for routine screenings.

Patient-Reported Experiences of Breast Cancer Screening, Diagnosis, and Treatment Delay, and Telemedicine Adoption during COVID-19.

PURPOSE: To evaluate and quantify potential sociodemographic disparities in breast cancer screening, diagnosis, and treatment due to the COVID-19 pandemic, and the use of telemedicine. METHODS: We fielded a 52-item web-based questionnaire from 14 May 2020 to 1 July 2020 in partnership with several U.S.-based breast cancer advocacy groups. Individuals aged 18 or older were eligible for this study if they: (1) received routine breast cancer screening; OR (2) were undergoing diagnostic evaluation for breast cancer; OR (3) had ever been diagnosed with breast cancer. We used descriptive statistics to understand the extent of cancer care delay and telemedicine adoption and used multivariable logistic regression models to estimate the association of sociodemographic factors with odds of COVID-19-related delays in care and telemedicine use. RESULTS: Of 554 eligible survey participants, 493 provided complete data on demographic and socioeconomic factors and were included in the analysis. Approximately half (n = 248, 50.3%) had a personal history of breast cancer. Overall, 188 (38.1%) participants had experienced any COVID-19-related delay in care including screening, diagnosis, or treatment, and 339 (68.8) reported having at least one virtual appointment during the study period. Compared to other insurance types, participants with Medicaid insurance were 2.58 times more likely to report a COVID-19-related delay in care (OR 2.58, 95% Cl: 1.05, 6.32; p = 0.039). Compared to participants with a household income of less than USD 50,000, those with a household income of USD 150,000 or more were 2.38 (OR 2.38, 95% Cl: 1.09, 5.17; p = 0.029) times more likely to adopt virtual appointments. Self-insured participants were 70% less likely to use virtual appointment compared to those in other insurance categories (OR 0.28, 95% Cl: 0.11, 0.73; p = 0.009). CONCLUSIONS: The COVID-19 pandemic has had a significant impact on breast cancer screening, diagnosis, and treatment, and accelerated the delivery of virtual care. Lower-income groups and patients with certain insurance categories such as Medicaid or self-insured could be more likely to experience care delay or less likely to use telemedicine. Careful attention must be paid to vulnerable groups to insure equity in breast cancer-related service utilization and telemedicine access during and beyond the COVID-19 pandemic.

Uptake of HPV Vaccine among young adults with disabilities, 2011 to 2018.

INTRODUCTION: Little is known about human papillomavirus (HPV) vaccine uptake among young adults with disabilities (YAWD), despite this population having a higher risk of HPV infection and related cancers compared to the general population. OBJECTIVE: To compare the prevalence of HPV vaccination among young adults with disabilities to young adults without disabilities. We hypothesized that YAWD would have a lower prevalence of HPV vaccination than the general population. METHODS: This cross-sectional study used data for the years 2011 to 2018 of the National Health Interview Survey. Our analysis included 14,577 people (weighted n = 34,420,024) aged 18 to 26 years. Univariate and multivariable logistic models were used to estimate the role of disability on HPV vaccination uptake among young adults and to identify potential factors associated with HPV vaccination among YAWD. RESULTS: The proportion of female and male YAWD with HPV vaccination was similar to those without disabilities, regardless of sex (Female Adjusted Odds Ratio (OR): 1.16; 95% Confidence Interval (CI): 0.91 to 1.48; Male Adjusted OR: 1.05; 95% CI: 0.69 to 1.60). Among female and male YAWD, the proportion with HPV vaccination was 56.1% and 28.5%, respectively. Other factors significantly associated with HPV vaccination among YAWD included age, country of birth, healthcare utilization, and insurance status. CONCLUSIONS: HPV vaccination among YAWD did not differ significantly from those without disabilities; however, the prevalence of HPV vaccination among young adult males and females remains significantly below national goals. Connecting young adults, specifically male YAWD, to the healthcare system is of utmost importance to improve HPV vaccination uptake.

Demographic differences in willingness to share electronic health records in the All of Us Research Program.

OBJECTIVE: Participant willingness to share electronic health record (EHR) information is central to success of the National Institutes of Health All of Us Research Program (AoURP). We describe the demographic characteristics of participants who decline access to their EHR data. MATERIALS AND METHODS: We included participants enrolling in AoURP between June 6, 2017 and December 31, 2019 through the Trans-American Consortium for the Health Care Systems Research Network (TACH). TACH is a consortium of health care systems spanning 6 states, and an AoURP research partner. RESULTS: We analyzed data for 25 852 participants (89.3% of those enrolled). Mean age = 52.0 years (SD 16.8), with 66.5% White, 18.7% Black/African American, 7.7% Hispanic, 32.5% female, and 76% with >a high school diploma. Overall, 2.3% of participants declined to share access to their EHR data (range across TACH sites = 1.3% to 3.5%). Younger age, female sex, and education >high school were significantly associated with decline to share EHR data, odds ratio (95% confidence interval) = 1.26 (1.19-1.33), 1.74 (1.42-2.14), and 2.44 (1.86-3.21), respectively. Results were similar when several sensitivity analyses were performed. DISCUSSION: AoURP seeks a dataset reflecting our nation's diversity in all aspects of participation. Those under-represented in biomedical research may be reluctant to share access to their EHR data. CONCLUSION: In our data, race and ethnicity were not independently related to participant decision to decline access to their EHR information. Results suggest that the value of the AoURP dataset is unlikely to be constrained by the size or the racial/ethnic composition of this subgroup.

Multi-trajectory models of serum biomarkers among patients with monoclonal gammopathy of undetermined significance.

Understanding the progression of monoclonal gammopathy of undetermined significance (MGUS) to multiple myeloma (MM) is needed to identify patients who would benefit from closer clinical surveillance. Given that two of the defining criteria of MM are renal failure and anemia, we described the trajectories of creatinine (Cr) and hemoglobin (Hgb) over time in patients with a diagnosis of MGUS. Patients diagnosed with MGUS (n = 424) were identified by a previously validated case-finding algorithm using health claims and electronic health record data (2007-2015) and followed through 2018. Group-based trajectory modeling identified patients with distinct laboratory value trajectories of Cr (mg/dl) and Hgb (g/dl). Most patients were non-Hispanic White (97.6%) with a mean age of 75 years at MGUS diagnosis. Three multi-trajectory groups were identified: (1) Normal Cr/Hgb (n = 225; 53.1%)-stable serum Cr levels and decreasing, normal Hgb levels; (2) Normal Cr/lower-normal Hgb group (n = 188; 44.3%)-stable, slightly elevated levels of Cr and decreasing levels of Hgb; and (3) High Cr/borderline Hgb group (n = 11; 2.6%)-increased Cr levels and stable low levels of Hgb. Patients with MGUS in Group 2 were older than patients in other groups, and patients in group 3 had more comorbidities than participants in all other groups. Few patients developed MM during the study period. We were able to identify distinct biomarker trajectories in patients with MGUS over time. Future research should investigate how these trajectories may be related to the risk of progression to MM, including M-protein levels.

Association Between Body Mass Index and Cancer Screening Adherence Among Latinas in the United States and Puerto Rico.

Background: Research on the role of body size on cancer screening is mixed with few studies among Latinas in the United States. We evaluated the association between body size and cancer screening adherence among Latinas living in Puerto Rico and the rest of the United States. Methods: We conducted a cross-sectional study using 2012-2018 Behavioral Risk Factor Surveillance System data among Latinas 50-64 years of age (n = 16,410). Breast, cervical, and colorectal cancer screening (guideline adherent: yes/no), height and weight were self-reported. Prevalence ratios (PRs) derived from Poisson models were estimated for each cancer screening utilization for Puerto Rico versus rest of the United States by body mass index (BMI) category. Results: Nearly a quarter of women lacked adherence with breast and cervical cancer screening and 43.6% were nonadherent to colorectal cancer screening. Latinas with BMI ≥40.0 kg/m2 in both groups were more likely to lack adherence to cervical cancer screening than women with BMI 18.5-24.9 kg/m2. For those with BMI ≥40.0 kg/m2, Latinas in Puerto Rico were more likely to lack adherence to colorectal cancer screening recommendations than Latinas living in the rest of the United States (adjusted PR: 1.38; 95% confidence interval = 1.12-1.70). Conclusions: The role of body size in cancer screening utilization among Latinas differs in women living in Puerto Rico versus in the rest of the United States and varies by cancer type. Understanding Latinas' experience can inform culturally adapted interventions to promote cancer screening.

Differences in survival among multiple myeloma patients in the United States SEER population by neighborhood socioeconomic status and race/ethnicity.

PURPOSE: We examined the combined influences of race/ethnicity and neighborhood socioeconomic status (SES) on long-term survival among patients with multiple myeloma (MM). METHODS: Data from the 2000-2015 NCI Surveillance, Epidemiology, and End Results Program (SEER-18) were used. Census tract-level SES index was assessed in tertiles (low, medium, high SES). Competing-risk modeling was used to estimate sub-hazard ratios (SHR) and 95% confidence intervals (CIs) for SES tertile adjusted for sex and age at diagnosis and stratified by race/ethnicity. RESULTS: Overall, living in a low SES neighborhood was associated with worse MM survival. However, we observed some variation in the association by racial/ethnic group. Living in a low versus a high SES neighborhood was associated with a 35% (95% CI = 1.16-1.57) increase in MM-specific mortality risk among Asian/Pacific Islander cases, a 17% (95% CI = 1.12-1.22) increase among White cases, a 14% (95% CI = 1.04-1.23) increase among Black cases, and a 7% (95% CI = 0.96-1.19) increase among Hispanic cases. CONCLUSION: These results suggest that the influence of both SES and race/ethnicity should be considered when considering interventions to remedy disparities in MM survival.

Validation of an electronic algorithm for Hodgkin and non-Hodgkin lymphoma in ICD-10-CM.

PURPOSE: Lymphoma is a health outcome of interest for drug safety studies. Studies using administrative claims data require the accurate identification of lymphoma cases. We developed and validated an International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM)-based algorithm to identify lymphoma in healthcare claims data. METHODS: We developed a three-component algorithm to identify patients aged ≥15 years who were newly diagnosed with Hodgkin (HL) or non-Hodgkin (NHL) lymphoma from January 2016 through July 2018 among members of four Data Partners within the FDA's Sentinel System. The algorithm identified potential cases as patients with ≥2 ICD-10-CM lymphoma diagnosis codes on different dates within 183 days; ≥1 procedure code for a diagnostic procedure (e.g., biopsy, flow cytometry) and ≥1 procedure code for a relevant imaging study within 90 days of the first lymphoma diagnosis code. Cases identified by the algorithm were adjudicated via chart review and a positive predictive value (PPV) was calculated. RESULTS: We identified 8723 potential lymphoma cases via the algorithm and randomly sampled 213 for validation. We retrieved 138 charts (65%) and adjudicated 134 (63%). The overall PPV was 77% (95% confidence interval: 69%-84%). Most cases also had subtype information available, with 88% of cases identified as NHL and 11% as HL. CONCLUSIONS: Seventy-seven percent of lymphoma cases identified by an algorithm based on ICD-10-CM diagnosis and procedure codes and applied to claims data were true cases. This novel algorithm represents an efficient, cost-effective way to target an important health outcome of interest for large-scale drug safety and public health surveillance studies.