Early Evidence of Chronic Obstructive Pulmonary Disease Obscured by Race-Specific Prediction Equations.

Rationale: The identification of early chronic obstructive pulmonary disease (COPD) is essential to appropriately counsel patients regarding smoking cessation, provide symptomatic treatment, and eventually develop disease-modifying treatments. Disease severity in COPD is defined using race-specific spirometry equations. These may disadvantage non-White individuals in diagnosis and care. Objectives: Determine the impact of race-specific equations on African American (AA) versus non-Hispanic White individuals. Methods: Cross-sectional analyses of the COPDGene (Genetic Epidemiology of Chronic Obstructive Pulmonary Disease) cohort were conducted, comparing non-Hispanic White (n = 6,766) and AA (n = 3,366) participants for COPD manifestations. Measurements and Main Results: Spirometric classifications using race-specific, multiethnic, and "race-reversed" prediction equations (NHANES [National Health and Nutrition Examination Survey] and Global Lung Function Initiative "Other" and "Global") were compared, as were respiratory symptoms, 6-minute-walk distance, computed tomography imaging, respiratory exacerbations, and St. George's Respiratory Questionnaire. Application of different prediction equations to the cohort resulted in different classifications by stage, with NHANES and Global Lung Function Initiative race-specific equations being minimally different, but race-reversed equations moving AA participants to more severe stages and especially between the Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage 0 and preserved ratio impaired spirometry groups. Classification using the established NHANES race-specific equations demonstrated that for each of GOLD stages 1-4, AA participants were younger, had fewer pack-years and more current smoking, but had more exacerbations, shorter 6-minute-walk distance, greater dyspnea, and worse BODE (body mass index, airway obstruction, dyspnea, and exercise capacity) scores and St. George's Respiratory Questionnaire scores. Differences were greatest in GOLD stages 1 and 2. Race-reversed equations reclassified 774 AA participants (43%) from GOLD stage 0 to preserved ratio impaired spirometry. Conclusions: Race-specific equations underestimated disease severity among AA participants. These effects were particularly evident in early disease and may result in late detection of COPD.

Use of the Spirometric "Fixed-Ratio" Underdiagnoses COPD in African-Americans in a Longitudinal Cohort Study.

BACKGROUND: COPD diagnosis is tightly linked to the fixed-ratio spirometry criteria of FEV1/FVC < 0.7. African-Americans are less often diagnosed with COPD. OBJECTIVE: Compare COPD diagnosis by fixed-ratio with findings and outcomes by race. DESIGN: Genetic Epidemiology of COPD (COPDGene) (2007-present), cross-sectional comparing non-Hispanic white (NHW) and African-American (AA) participants for COPD diagnosis, manifestations, and outcomes. SETTING: Multicenter, longitudinal US cohort study. PARTICIPANTS: Current or former smokers with ≥ 10-pack-year smoking history enrolled at 21 clinical centers including over-sampling of participants with known COPD and AA. Exclusions were pre-existing non-COPD lung disease, except for a history of asthma. MEASUREMENTS: Subject diagnosis by conventional criteria. Mortality, imaging, respiratory symptoms, function, and socioeconomic characteristics, including area deprivation index (ADI). Matched analysis (age, sex, and smoking status) of AA vs. NHW within participants without diagnosed COPD (GOLD 0; FEV1 ≥ 80% predicted and FEV1/FVC ≥ 0.7). RESULTS: Using the fixed ratio, 70% of AA (n = 3366) were classified as non-COPD, versus 49% of NHW (n = 6766). AA smokers were younger (55 vs. 62 years), more often current smoking (80% vs. 39%), with fewer pack-years but similar 12-year mortality. Density distribution plots for FEV1 and FVC raw spirometry values showed disproportionate reductions in FVC relative to FEV1 in AA that systematically led to higher ratios. The matched analysis demonstrated GOLD 0 AA had greater symptoms, worse DLCO, spirometry, BODE scores (1.03 vs 0.54, p < 0.0001), and greater deprivation than NHW. LIMITATIONS: Lack of an alternative diagnostic metric for comparison. CONCLUSIONS: The fixed-ratio spirometric criteria for COPD underdiagnosed potential COPD in AA participants when compared to broader diagnostic criteria. Disproportionate reductions in FVC relative to FEV1 leading to higher FEV1/FVC were identified in these participants and associated with deprivation. Broader diagnostic criteria for COPD are needed to identify the disease across all populations.

Left behind: The potential impact of CFTR modulators on racial and ethnic disparities in cystic fibrosis.

The advent of CFTR modulators, a genomic specific medication, revolutionized the treatment of CF for many patients. However, given that these therapeutics were only developed for specific CFTR mutations, not all people with CF have access to such disease-modifying drugs. Racial and ethnic minority groups are less likely to have CFTR mutations that are approved for CFTR modulators. This exclusion has the potential to widen existing health disparities.

Racial Segregation and Respiratory Outcomes among Urban Black Residents with and at Risk of Chronic Obstructive Pulmonary Disease.

Rationale: Racial residential segregation has been associated with worse health outcomes, but the link with chronic obstructive pulmonary disease (COPD) morbidity has not been established.Objectives: To investigate whether racial residential segregation is associated with COPD morbidity among urban Black adults with or at risk of COPD.Methods: Racial residential segregation was assessed using isolation index, based on 2010 decennial census and baseline address, for Black former and current smokers in the multicenter SPIROMICS (Subpopulations and Intermediate Outcome Measures in COPD Study), a study of adults with or at risk for COPD. We tested the association between isolation index and respiratory symptoms, physiologic outcomes, imaging parameters, and exacerbation risk among urban Black residents, adjusting for established COPD risk factors, including smoking. Additional mediation analyses were conducted for factors that could lie on the pathway between segregation and COPD outcomes, including individual and neighborhood socioeconomic status, comorbidity burden, depression/anxiety, and ambient pollution.Measurements and Main Results: Among 515 Black participants, those residing in segregated neighborhoods (i.e., isolation index ⩾0.6) had worse COPD Assessment Test score (ß = 2.4; 95% confidence interval [CI], 0.7 to 4.0), dyspnea (modified Medical Research Council scale; ß = 0.29; 95% CI, 0.10 to 0.47), quality of life (St. George's Respiratory Questionnaire; ß = 6.1; 95% CI, 2.3 to 9.9), and cough and sputum (ß = 0.8; 95% CI, 0.1 to 1.5); lower FEV1% predicted (ß = -7.3; 95% CI, -10.9 to -3.6); higher rate of any and severe exacerbations; and higher percentage emphysema (ß = 2.3; 95% CI, 0.7 to 3.9) and air trapping (ß = 3.8; 95% CI, 0.6 to 7.1). Adverse associations attenuated with adjustment for potential mediators but remained robust for several outcomes, including dyspnea, FEV1% predicted, percentage emphysema, and air trapping.Conclusions: Racial residential segregation was adversely associated with COPD morbidity among urban Black participants and supports the hypothesis that racial segregation plays a role in explaining health inequities affecting Black communities.

Disparities in Kidney Stone Disease: A Scoping Review.

PURPOSE: We reviewed the available evidence regarding health disparities in kidney stone disease to identify knowledge gaps in this area. MATERIALS AND METHODS: A literature search was conducted using PubMed®, Embase® and Scopus® limited to articles published in English from 1971 to 2020. Articles were selected based on their relevance to disparities in kidney stone disease among adults in the United States. RESULTS: Several large epidemiological studies suggest disproportionate increases in incidence and prevalence of kidney stone disease among women as well as Black and Hispanic individuals in the United States, whereas other studies of comparable size do not report racial and ethnic demographics. Numerous articles describe disparities in imaging utilization, metabolic workup completion, analgesia, surgical intervention, stone burden at presentation, surgical complications, followup, and quality of life based on race, ethnicity, socioeconomic status and place of residence. Differences in urinary parameters based on race, ethnicity and socioeconomic status may be explained by both dietary and physiological factors. All articles assessed had substantial risk of selection bias and confounding. CONCLUSIONS: Health disparities are present in many aspects of kidney stone disease. Further research should focus not only on characterization of these disparities but also on interventions to reduce or eliminate them.

Acute chest syndrome in pediatric sickle cell disease: Associations with racial composition and neighborhood deprivation.

BACKGROUND: Acute chest syndrome (ACS) is the leading cause of death for children with sickle cell disease (SCD). Recurrent ACS has detrimental effects on pulmonary health and health care costs. Neighborhood characteristics affect the outcomes of many pediatric chronic diseases, but their role in SCD is not well studied. In this study, we investigated the effects of area-level socioeconomic deprivation and racial composition on the recurrence of ACS. STUDY DESIGN: We performed a retrospective cross-sectional analysis of clinical data from a large pediatric SCD center. Patients' residential addresses were geocoded and linked to a composite area deprivation index (ADI) and percent African American population at the level of Census block groups. The association of recurrent ACS with neighborhood characteristics was evaluated using logistic regression analysis. RESULTS: The sample included 709 children with SCD. Residence in a socioeconomically deprived neighborhood was associated with 27% less risk of recurrent ACS, and residence in a predominantly African American neighborhood was associated with 41% less risk of ACS recurrence. The racial composition explained the protective effect of living in a high-deprivation area after adjusting for sociodemographic and clinical covariates. Demographic and clinical factors associated with recurrent ACS included older age, male gender, asthma, hydroxyurea use, and chronic transfusion therapy. CONCLUSIONS: This is the first study to report a protective effect of residing in a predominantly African American community for ACS recurrence. Further prospective studies are needed to confirm the association and to understand the mechanisms of such relationship.

The Association Between Neighborhood Social Vulnerability and COVID-19 Testing, Positivity, and Incidence in Alabama and Louisiana.

Racial/ethnic and socioeconomic disparities in COVID-19 burden have been widely reported. Using data from the state health departments of Alabama and Louisiana aggregated to residential Census tracts, we assessed the relationship between social vulnerability and COVID-19 testing rates, test positivity, and incidence. Data were cumulative for the period of February 27, 2020 to October 7, 2020. We estimated the association of the 2018 Social Vulnerability Index (SVI) overall score and theme scores with COVID-19 tests, test positivity, and cases using multivariable negative binomial regressions. We adjusted for rurality with 2010 Rural-Urban Commuting Area codes. Regional effects were modeled as fixed effects of counties/parishes and state health department regions. The analytical sample included 1160 Alabama and 1105 Louisiana Census tracts. In both states, overall social vulnerability and vulnerability themes were significantly associated with increased COVID-19 case rates (RR 1.57, 95% CI 1.45-1.70 for Alabama; RR 1.36, 95% CI 1.26-1.46 for Louisiana). There was increased COVID-19 testing with higher overall vulnerability in Louisiana (RR 1.26, 95% CI 1.14-1.38), but not in Alabama (RR 0.95, 95% CI 0.89-1.02). Consequently, test positivity in Alabama was significantly associated with social vulnerability (RR 1.66, 95% CI 1.57-1.75), whereas no such relationship was observed in Louisiana (RR 1.05, 95% CI 0.98-1.12). Social vulnerability is a risk factor for COVID-19 infection, particularly among racial/ethnic minorities and those in disadvantaged housing conditions without transportation. Increased testing targeted to vulnerable communities may contribute to reduction in test positivity and overall COVID-19 disparities.

Determinants of Obesity in Two Urban Communities: Perceptions and Community-Driven Solutions.

Objective: In the search of solutions to the rising rates of obesity, community perspectives are important because they highlight areas of need and help determine the level of community support for potential interventions. This study aimed to identify community perceptions of factors associated with obesity in two urban municipalities - one racially mixed and one predominantly African American - and to explore community-driven solutions to the problem of obesity. Methods: The study used Photovoice methodology to understand what community members perceived as obesity-promoting factors in their residential environments. Results: A total of 96 photographs of factors relevant to obesity were discussed. Most commonly depicted were restaurants, grocery stores, fast food, and fitness centers. In 10 race-stratified focus groups, participants made 592 comments on 12 themes, the most common being restaurants, physical activity, food stores, and proposed solutions. The top three themes - restaurants, physical activity, and food stores - accounted for 58% of all barriers to healthy weight. Proposed solutions ranged from personal efforts and peer support, to educating adults and children, to community action. Conclusions: Interventions addressing the immediate food and physical activity environment - restaurants, grocery stores, and resources for physical activity - may have high likelihood of success as they align with community needs and understanding of priorities. Health education and promotion programs that increase food-related knowledge and skills are also needed and likely to receive strong community support.

Does one size fit all? The role of body mass index and waist circumference in systemic inflammation in midlife by race and gender.

OBJECTIVE: This study investigates the associations of body mass index (BMI) and waist circumference (WC) with markers of systemic inflammation in midlife by race and gender. DESIGN: Data were obtained from the Survey of Midlife in the United States, a cross-sectional, observational study of Americans 35 years old or older (White men: N = 410; White women: N = 490; Black men: N = 58; Black women: N = 117). Inflammation was measured by concentrations of fibrinogen and C-reactive protein (CRP) in fasting plasma and concentrations of E-selectin and interleukin-6 (IL-6) in fasting serum. Anthropometric data were used to obtain BMI and WC. Socio-demographic and health-related factors were assessed with a survey. Multivariate models by race and gender were estimated to test the roles of BMI and WC for each inflammation marker. RESULTS: Compared to White men, Black women have higher BMI and higher levels of all four inflammation markers; White women have lower BMI, lower WC, and lower E-selectin and fibrinogen but higher CRP; and Black men have higher fibrinogen. After adjusting for socio-demographic and health-related covariates as well as perceived discrimination, WC is associated with all four markers of inflammation among White men and women; with three markers (fibrinogen, CRP, and IL-6) of inflammation among Black women; and with CRP (and marginally with fibrinogen and E-selectin) among Black men. BMI is associated with higher CRP and fibrinogen among Black men (marginally so for White men) but not for women of either race. CONCLUSIONS: WC shows more consistent associations with inflammation markers than BMI, although the relationships vary by inflammation marker and population group. Our findings suggest that WC is a risk factor for systemic inflammation among White and Black men and women, and BMI is an additional risk factor for Black men.

Disparities in chronic medical conditions in the Mid-South.

OBJECTIVE: This study examined differences in socio-demographic characteristics and health behaviors relevant to chronic medical conditions (CMCs) in the Mid-South region (Alabama, Mississippi, Louisiana, Kentucky, Tennessee, and Arkansas), and identified subpopulations with increased burden of chronic disease. METHODS: Data were obtained from the 2013 Behavioral Risk Factor Surveillance System. The top five most prevalent CMCs in the Mid-South were analyzed: asthma, high blood pressure (HBP), obesity, arthritis, and depression. Adjusted odds ratios (AOR) and confidence intervals (CI) of race-gender combinations were estimated using logistic regression. Differences in associations between socio-demographic characteristics and CMCs according to income were also examined. RESULTS: The weighted prevalence estimates of the top five CMCs ranged from 66% (asthma) to 20% (depression). Higher income and employment were associated with better outcomes in all five CMCs. Higher educational attainment and physical activity were associated with better HBP, obesity, and arthritis status. Black and white females had higher odds of asthma compared to white males (black AOR = 1.7, CI: 1.1-2.6, white AOR = 1.7, CI: 1.3-2.2). Black males had lower odds of arthritis (AOR = 0.8, CI: 0.6-0.9), while white females had higher odds (AOR = 1.3, CI: 1.2-1.4). Similarly, the odds of depression were lower among black males (AOR = 0.5, CI: 0.4-0.6) and higher among white females (AOR = 2.2, CI: 2.0-2.5). Income-related differences by race were observed for HBP and obesity. CONCLUSION: Disparities in CMCs are associated with income and disproportionately affect the black population. In the Mid-South, race and gender disparities in the top five chronic conditions are more prominent among higher-income rather than lower-income individuals.

Bikeshare Use in Urban Communities: Individual and Neighborhood Factors.

Objective: Bicycling is an affordable way to increase access to employment, schooling, and services and an effective measure against obesity. Bikeshare programs can make bicycling accessible to diverse populations, but little evidence exists on their adoption in low-resource neighborhoods. Our study examined factors associated with bikeshare use in a metropolitan area in the southern United States. Methods: We performed a retrospective cross-sectional analysis of a database of clients (N=815) who rented a bicycle from Zyp Bikeshare in Birmingham, Alabama between October 2015 and November 2016. Individual-level variables included bike use frequency, average speed, total miles traveled, total minutes ridden, bike type (traditional vs electricity-assisted pedelec), membership type, sex, and age. Area-level data aggregated to Census tracts, proxies for neighborhoods, were obtained from the 2010 US Census after geocoding clients' billing addresses. Using exploratory factor analysis, a neighborhood socioeconomic disadvantage index (SDI) was constructed. Bikeshare station presence in a tract was included as a covariate. Multivariate linear regression models, adjusted for clustering on Census tracts, were estimated to determine predictors of bikeshare use. Results: In a multivariate regression model of individual and neighborhood characteristics adjusted for clustering, each decile increase in the SDI was associated with a 9% increase in bikeshare use (P<.001). Bikeshare use was also positively associated with speed (.1, P<.001), total miles (.008, P<.001), and pedelec use (1.02, P<.01). Conclusion: Higher neighborhood socioeconomic disadvantage is associated with higher bikeshare use. Bikeshare is a viable transportation option in low-resource neighborhoods and may be an effective tool to improve the connectivity, livability, and health of urban communities.

Social Determinants of Adherence to Pulmonary Rehabilitation for Chronic Obstructive Pulmonary Disease.

Adherence to pulmonary rehabilitation (PR) is low. Previous studies have focused on clinical predictors of PR completion. We aimed to identify social determinants of adherence to PR. A cross-sectional analysis of a database of COPD patients (N = 455) in an outpatient PR program was performed. Adherence, a ratio of attended-to-prescribed sessions, was coded as low (<35%), moderate (35-85%), and high (>85%). Individual-level measures included age, sex, race, BMI, smoking status, pack-years, baseline 6-minute walk distance (6MWD: <150, 150-249, ≥250), co-morbidities, depression, and prescribed PR sessions (≤20, 21-30, >30). Fifteen area-level measures aggregated to Census tracts were obtained from the U.S. Census after geocoding patients' addresses. Using exploratory factor analysis, a neighborhood socioeconomic disadvantage index was constructed, which included variables with factor loading >0.5: poverty, public assistance, households without vehicles, cost burden, unemployment, and minority population. Multivariate regression models were adjusted for clustering on Census tracts. Twenty-six percent of patients had low adherence, 23% were moderately adherent, 51% were highly adherent. In the best fitted full model, each decile increase in neighborhood socioeconomic disadvantage increased the risk of moderate vs high adherence by 14% (p < 0.01). Smoking tripled the relative risk of low adherence (p < 0.01), while each increase in 6MWD category decreased that risk by 72% (p < 0.01) and 84% (p < 0.001), respectively. These findings show that, relative to high adherence, low adherence is associated with limited functional capacity and current smoking, while moderate adherence is associated with socioeconomic disadvantage. The distinction highlights different pathways to suboptimal adherence and calls for tailored intervention approaches.

Dimensions of Racial Identity and Perceived Discrimination in Health Care.

OBJECTIVE: Perceived discrimination is an important risk factor for minority health. Drawing from the scholarship on multidimensionality of race, this study examines the relationships between perceived discrimination in health care and two dimensions of racial identity: self-identified race/ethnicity and perceived attributed race/ethnicity (respondents' perceptions of how they are racially classified by others). METHODS: We used Behavioral Risk Factor Surveillance System data collected in 2004-2013 and we specifically examined the data on perceived racial discrimination in health care during the past 12 months, perceived attributed race/ethnicity, and self-identified race/ethnicity. RESULTS: In models adjusting for sociodemographic and other factors, both dimensions of racial/ethnic identity contributed independently to perceived discrimination in health care. After controlling for self-identified race/ethnicity, respondents who reported being classified as Black, Asian, Hispanic, and Native American had higher likelihood of perceived discrimination than respondents who reported being classified as White. Similarly, after taking perceived attributed race/ethnicity into account, self-identified Blacks, Native Americans, and multiracial respondents were more likely to report perceived discrimination than counterparts who self-identified as White. The model using only perceived attributed race/ethnicity to predict perceived discrimination showed a superior fit with the data than the model using only self-identified race/ethnicity. CONCLUSION: Perceived attributed race/ethnicity captures an aspect of racial/ethnic identity that is correlated, but not interchangeable, with self-identified race/ethnicity and contributes uniquely to perceived discrimination in health care. Applying the concept of multidimensionality of race/ethnicity to health disparities research may reveal understudied mechanisms linking race/ethnicity to health risks.

Cross-Cutting mHealth Behavior Change Techniques to Support Treatment Adherence and Self-Management of Complex Medical Conditions: Systematic Review.

Background: Mobile health (mHealth) interventions have immense potential to support disease self-management for people with complex medical conditions following treatment regimens that involve taking medicine and other self-management activities. However, there is no consensus on what discrete behavior change techniques (BCTs) should be used in an effective adherence and self-management-promoting mHealth solution for any chronic illness. Reviewing the extant literature to identify effective, cross-cutting BCTs in mHealth interventions for adherence and self-management promotion could help accelerate the development, evaluation, and dissemination of behavior change interventions with potential generalizability across complex medical conditions. Objective: This study aimed to identify cross-cutting, mHealth-based BCTs to incorporate into effective mHealth adherence and self-management interventions for people with complex medical conditions, by systematically reviewing the literature across chronic medical conditions with similar adherence and self-management demands. Methods: A registered systematic review was conducted to identify published evaluations of mHealth adherence and self-management interventions for chronic medical conditions with complex adherence and self-management demands. The methodological characteristics and BCTs in each study were extracted using a standard data collection form. Results: A total of 122 studies were reviewed; the majority involved people with type 2 diabetes (28/122, 23%), asthma (27/122, 22%), and type 1 diabetes (19/122, 16%). mHealth interventions rated as having a positive outcome on adherence and self-management used more BCTs (mean 4.95, SD 2.56) than interventions with no impact on outcomes (mean 3.57, SD 1.95) or those that used >1 outcome measure or analytic approach (mean 3.90, SD 1.93; P=.02). The following BCTs were associated with positive outcomes: self-monitoring outcomes of behavior (39/59, 66%), feedback on outcomes of behavior (34/59, 58%), self-monitoring of behavior (34/59, 58%), feedback on behavior (29/59, 49%), credible source (24/59, 41%), and goal setting (behavior; 14/59, 24%). In adult-only samples, prompts and cues were associated with positive outcomes (34/45, 76%). In adolescent and young adult samples, information about health consequences (1/4, 25%), problem-solving (1/4, 25%), and material reward (behavior; 2/4, 50%) were associated with positive outcomes. In interventions explicitly targeting medicine taking, prompts and cues (25/33, 76%) and credible source (13/33, 39%) were associated with positive outcomes. In interventions focused on self-management and other adherence targets, instruction on how to perform the behavior (8/26, 31%), goal setting (behavior; 8/26, 31%), and action planning (5/26, 19%) were associated with positive outcomes. Conclusions: To support adherence and self-management in people with complex medical conditions, mHealth tools should purposefully incorporate effective and developmentally appropriate BCTs. A cross-cutting approach to BCT selection could accelerate the development of much-needed mHealth interventions for target populations, although mHealth intervention developers should continue to consider the unique needs of the target population when designing these tools.

Development of a comprehensive survey to assess key socioecological determinants of health.

BACKGROUND: Although disparities in surgical outcomes are well-documented, our understanding of how socioecological factors drive these disparities remains limited. Comprehensive and efficient assessment tools are needed. This study's objective was to develop and assess the acceptability and feasibility of a comprehensive tool evaluating socioecological determinants of health in patients requiring colorectal surgery. METHODS: In the first phase, a comprehensive socioecological determinant of health assessment tool was developed. A review of validated socioecological health evaluation instruments was conducted, and a 2-step modified Delphi method addressed the length, clarity, appropriateness, and redundancy of each instrument. A comprehensive tool was then finalized. In the second phase, the tool was tested for acceptability and feasibility in adult patients requiring colorectal surgery using a theory-guided framework at 3 Alabama hospitals. Relationships between survey responses and measures of acceptability and feasibility were evaluated using results from initial pilot tests of the survey. RESULTS: In Phase 1, a modified Delphi process led to the development of a comprehensive tool that included 31 socioecological determinants of health (88 questions). Results of acceptability and feasibility were globally positive (>65%) for all domains. Overall, 83% of participants agreed that others would have no trouble completing the survey, 90.4% of respondents reported the survey was not burdensome, 97.6% of patients reported having enough time to complete the survey, and 80.9% agreed the survey was well-integrated into their appointment. CONCLUSION: An 88-item assessment tool measuring 31 socioecological determinants of health was developed with high acceptability and feasibility for patients who required colorectal surgery. This work aids in the development of research needed to understand and address surgical disparities.

Aiming to Improve Equity in Pulmonary Health: Cystic Fibrosis.

This review summarizes the evidence of health disparities in cystic fibrosis (CF), an autosomal recessive genetic disorder with substantial variation in disease progression and outcomes. We review disparities by race, ethnicity, socioeconomic status, geographic location, gender identity, or sexual orientation documented in the literature. We outline the mechanisms that generate and perpetuate such disparities across levels and domains of influence and assess the implications of this evidence. We then recommend strategies for improving equity in CF outcomes, drawing on recommendations for the general population and considering approaches specific to people living with CF.

Electronic screening for unmet social needs in a pediatric pulmonary clinic: Acceptability and associations with health outcomes.

BACKGROUND: Children with unmet basic needs experience worse health than more advantaged counterparts. There has been limited research on screening for unmet basic needs in pediatric subspecialty care. METHODS: Caregivers of established patients in pediatric asthma and cystic fibrosis (CF) clinics were screened for unmet basic needs with an electronic survey, which asked about concerns and stress level (5-point Likert scale) related to food, housing, transportation, health insurance, and childcare, among others. Medical record review provided patient demographic characteristics and clinical data. A follow-up survey with the clinical providers assessed the acceptability of electronic screening for unmet needs. RESULTS: The sample included 214 pediatric patients (N = 105 asthma, N = 109 CF) and their caregivers. Most patients with asthma (76%) were Black, 30% in households with <$20,000 annual income. In contrast, most patients with CF (93%) were white, 12% in households with <$20,000 annual income. Reported needs included food insecurity (29% asthma and 17% CF), healthy food (75% asthma and 87% CF), financial insecurity (45% asthma and 32% CF), health insurance (15% asthma and 28% CF), smoke exposure (24% asthma and 28% CF), child's exercise (21% asthma and 28% CF), living conditions (18% asthma and 17% CF), childcare (11% asthma and 15% CF), transportation (16% asthma and 9% CF), and housing insecurity (10% asthma and 8% CF). Concerns were rated moderately to very stressful. Food insecurity, financial insecurity, and smoke exposure were significantly associated with uncontrolled asthma. In people with CF, concerns about health insurance and child exercise were significantly associated with lower lung function and increased odds of hospitalizations. Clinicians believed that screening was important and should be administered by a designated person on the clinical team. CONCLUSIONS: Unmet basic needs and associated stress levels are linked to adverse pediatric pulmonary outcomes. Electronic screening, without face-to-face interaction or paper trail, facilitates high response rates and is easily integrated into clinic flow. Such screenings can identify vulnerable patients for targeted interventions and referral to available community resources.

Mobile health platform for self-management of pediatric cystic fibrosis: Impact on patient-centered care outcomes.

BACKGROUND: Previously, we adapted a mobile health platform (Genia) to the needs of patients and families in a pediatric CF center in the United States. In this feasibility study, we tested the impact of Genia on measures of patient-centered care. METHODS: In a one-group pre-post study with adolescents with CF and caregivers of children with CF, we tested Genia's effect over 6 months on patient satisfaction with chronic illness care (PACIC) and shared decision-making (CollaboRate). Feasibility and acceptability were assessed with exit interviews and app analytics. RESULTS: The intervention included 40 participants: 30 caregivers of children with CF age ≤14 years and 10 patients with CF age ≥15 years. The use of Genia was associated with increased satisfaction with care (p = 0.024), including delivery system and decision support (p = 0.017), goal setting (p = 0.006), and shared decision-making (p<0.001). The use of Genia was associated with nominal improvements in all QOL domains and symptom scales. The platform was feasible, with participants recording more than 4,400 observations (mean 84.2) and submitting 496 weekly reports (mean 13.8) and 70 quarterly reports (mean 1.8), and acceptable (95% retention rate). For participants, the most useful app feature was pre-visit reports (66.7%), and the top symptom trackers were those for cough (23.7%), appetite (21.1%), energy (18.4%), and medicines (18.4%). CONCLUSION: The use of Genia over 6 months was feasible, acceptable, and associated with improved measures of patient-centered care. Study results support wider use of Genia in clinical settings. Efficacy for clinical outcomes should be assessed in a randomized clinical trial.

Food insecurity screening and local food access: Contributions to nutritional outcomes among children and adults with cystic fibrosis in the United States.

BACKGROUND: As the nutritional status of people with CF (PwCF) is associated with their socioeconomic status, it is important to understand factors related to food security and food access that play a role in the nutritional outcomes of this population. We assessed the contributions of CF program-level food insecurity screening practices and area-level food access for nutritional outcomes among PwCF. METHODS: We conducted a cross-sectional analysis of 2019 data from the U.S. CF Patient Registry (CFFPR), linked to survey data on CF program-level food insecurity screening and 2019 patient zip code-level food access. Pediatric and adult populations were analyzed separately. Nutritional outcomes were assessed with annualized BMI percentiles (CDC charts) for children and BMI (kg/m2) for adults, with underweight status defined as BMIp <10% for children and BMI <18.5 kg/m2 for adults, and overweight or obese status defined as BMIp >85% for children and BMI >25 kg/m2 for adults. Analyses were adjusted for patient sociodemographic and clinical characteristics. RESULTS: The study population included 11,971 pediatric and 14,817 adult PwCF. A total of 137 CF programs responded to the survey, representing 71% of the pediatric sample and 45% of the CFFPR adult sample. The joint models of nutritional status as a function of both program-level food insecurity screening and area-level food access produced the following findings. Among children with CF, screening at every visit vs less frequently was associated with 39% lower odds of being underweight (OR 0.61, p = 0.019), and the effect remained the same and statistically significant after adjusting for all covariates (aOR 0.61, p = 0.047). Residence in a food desert was associated both with higher odds of being underweight (OR 1.66, p = 0.036; aOR 1.58, p = 0.008) and with lower BMIp (-4.81%, p = 0.004; adjusted -3.73%, p = 0.014). Among adults with CF, screening in writing vs verbally was associated with higher odds of being overweight (OR 1.22, p = 0.028; aOR 1.36, p = 0.002) and higher BMI (adjusted 0.43 kg/m2, p = 0.032). Residence in a food desert was associated with higher odds of being underweight (OR 1.48, p = 0.025). CONCLUSIONS: Food insecurity screening and local food access are independent predictors of nutritional status among PwCF. More frequent screening is associated with less underweight among children with CF, whereas screening in writing (vs verbally) is associated with higher BMI among adults. Limited food access is associated with higher odds of being underweight in both children and adults with CF, and additionally with lower BMI among children with CF. Study results highlight the need for standardized, evidence-based food insecurity screening across CF care programs and for equitable food access to optimize the nutritional outcomes of PwCF.

Letter to the Editor Response: Exploring COVID-19 Vaccine Hesitancy Among Stakeholders in African American and Latinx Communities in the Deep South Through the Lens of the Health Belief Model.

The purpose of this submission to respond to a Letter to the Editor recently submitted regarding our manuscript, "Exploring COVID-19 Vaccine Hesitancy among Stakeholders in African American and Latinx Communities in the Deep South through the Lens of the Health Belief Model" published in the American Journal of Health Promotion in February, 2022. The manuscript reported on a study that had as its purpose to qualitatively explore perceptions related to COVID-19 vaccination intention among African American and Latinx participants and suggest potential intervention strategies.