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BACKGROUND: One-third of people with cystic fibrosis (pwCF) are food insecure, with profound negative implications for their health. This qualitative study explored lived experiences with food insecurity among pwCF or their caregivers and summarized their perspectives on food insecurity screening in the cystic fibrosis (CF) programs where they receive care. METHODS: Semi-structured qualitative interviews were conducted with two groups: (1) adults with CF and (2) parents or caregivers of children with CF. PwCF or their caregivers with previously documented food insecurity were referred for participation by pediatric and adult CF programs across the United States. Interviews were recorded and transcribed, and data were coded and analyzed by two independent coders using a content-analysis approach with a constant comparative method to generate themes. RESULTS: A total of 26 participants from 22 CF programs were interviewed. The sample included 17 adults with CF and nine parents of children with CF. Participants were predominantly White (88%) and female (92%). Five overarching themes emerged: (1) food insecurity among CF patients and their families is onerous, (2) financial constraints imposed by the CF disease contribute to food insecurity, (3) federal and state programs provide limited food assistance, and other support is minimal, (4) shame and stigma engulf conversations around food insecurity with CF care teams, and (5) food insecurity screening in clinical settings is critical. CONCLUSIONS: Food insecurity among pwCF is invisible, but its consequences are dire. Assistance is limited, screening is inconsistent, and stigma is widespread. There is an urgent need to normalize food insecurity screening, standardize the screening process, and expand food assistance programs for pwCF.
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BACKGROUND: Patient-driven innovation in health care is an emerging phenomenon with benefits for patients with chronic conditions, such as cystic fibrosis (CF). However, previous research has not examined what may facilitate or hinder the implementation of such innovations from the provider perspective. OBJECTIVE: The aim of this study was to explain variations in the adoption of a patient-driven innovation among CF clinics. METHODS: A comparative multiple-case study was conducted on the adoption of a patient-controlled app to support self-management and collaboration with health care professionals (HCPs). Data collection and analysis were guided by the nonadoption, abandonment, spread, scale-up, and sustainability and complexity assessment tool (NASSS-CAT) framework. Data included user activity levels of patients and qualitative interviews with staff at 9 clinics (n=8, 88.9%, in Sweden; n=1, 11.1%, in the United States). We calculated the maximum and mean percentage of active users at each clinic and performed statistical process control (SPC) analysis to explore how the user activity level changed over time. Qualitative data were subjected to content analysis and complexity analysis and used to generate process maps. All data were then triangulated in a cross-case analysis. RESULTS: We found no evidence of nonadoption or clear abandonment of the app. Distinct patterns of innovation adoption were discernable based on the maximum end-user activity for each clinic, which we labeled as low (16%-23%), middle (25%-47%), or high (58%-95%) adoption. SPC charts illustrated that the introduction of new app features and research-related activity had a positive influence on user activity levels. Variation in adoption was associated with providers' perceptions of care process complexity. A higher perceived complexity of the value proposition, adopter system, and organization was associated with lower adoption. In clinics that adopted the innovation early or those that relied on champions, user activity tended to plateau or decline, suggesting a negative impact on sustainability. CONCLUSIONS: For patient-driven innovations to be adopted and sustained in health care, understanding patient-provider interdependency and providers' perspectives on what generates value is essential.
Subject(s)
Cystic Fibrosis , Telemedicine , Cystic Fibrosis/therapy , Humans , Telemedicine/statistics & numerical data , Sweden , Mobile Applications , United States , Male , Female , Patient Participation/methods , Patient Participation/statistics & numerical dataABSTRACT
BACKGROUND: Acrolein, an aldehyde in smoke from tobacco products, inhibits CFTR function in vitro. Ivacaftor is an FDA-approved potentiator that improves mutant CFTR function. This human clinical study investigated the relationship between two urinary markers of tobacco smoke exposure - the acrolein metabolite 3-HPMA and the nicotine metabolite NNAL - and sweat chloride response to ivacaftor in the G551D Observational Trial (GOAL). METHODS: 3-HPMA (low: <50th centile; moderate: 50-75th centile; high: >75th centile) and NNAL (detectable/undetectable) in GOAL samples was quantified with LC-MS/MS. Self-report of tobacco smoke exposure (Y/N) served as a subjective measure. Change in sweat chloride from pre- to 6 months post-ivacaftor treatment (ΔSC) was the primary CFTR-dependent readout. RESULTS: The sample included 151 individuals, mean age 20.7 (SD 11.4) years, range 6-59 years. Smoke exposure prevalence was 15 % per self-reports but 27 % based on detectable NNAL. 3-HPMA was increased in those reporting tobacco smoke exposure (607 vs 354 ng/ml, p = 0.008), with a higher proportion of smoke-exposed in the high- vs low-acrolein group (31 % vs 9 %, p=0.040). Compared to low-acrolein counterparts, high-acrolein participants experienced less decrease in sweat chloride (-35.2 vs -48.2 mmol/L; p = 0.020) and had higher sweat chloride values (50.6 vs 37.6 mmol/L; p = 0.020) 6 months post-ivacaftor. The odds of ivacaftor-mediated potentiation to near normative CFTR function (defined as SC6mo <40 mmol/L) was more than twice as high in the low-acrolein cohort (OR: 2.51, p = 0.026). CONCLUSIONS: Increased urinary 3-HPMA, an acrolein metabolite of tobacco smoke, is associated with a diminished sweat chloride response to ivacaftor potentiation of CFTR function.
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BACKGROUND: Older adults comprise the majority of patients with gastrointestinal (GI) cancer. Geriatric assessments (GAs) are recommended for older adults with cancer in part to detect aging-related impairments (e.g., frailty) associated with early mortality. Social factors like social vulnerability may also influence aging-related impairments. However, the association between social vulnerability and aging outcomes among older adults with cancer is understudied. METHODS: The authors included 908 older adults aged 60 years and older who were recently diagnosed with GI cancer undergoing GA at their first prechemotherapy visit to the University of Alabama at Birmingham oncology clinic. The primary exposure of interest was the social vulnerability index (SVI). Outcomes were frailty (frail vs. robust/prefrail) and total number of GA impairments (range, 0-13). The authors examined the association between SVI and outcomes using Poisson regression with robust variance estimation and generalized estimating equations. RESULTS: The median age at GA was 69 years (interquartile range, 64-75 years), 58.2% of patients were male, 22.6% were non-Hispanic Black, 29.1% had colorectal cancer, 28.2% had pancreatic cancer, and 70.3% had stage III/IV disease. Adjusting for age, sex, cancer type, and disease stage, each decile increase in the SVI was associated with an 8% higher prevalence of frailty (prevalence ratio, 1.08; 95% confidence interval, 1.05-1.11) and a 4% higher average count of total GA impairments (risk ratio, 1.04; 95% confidence interval, 1.02-1.06). The results were attenuated after further adjustment for race and education. CONCLUSIONS: Greater social vulnerability was associated with a higher prevalence of frailty and an increasing average number of GA impairments among older adults with GI cancers before systemic treatment. Intervening on social vulnerability may be a target for improving the risk of frailty and GA impairments, but associations of race and education should be further evaluated.
Subject(s)
Frailty , Gastrointestinal Neoplasms , Geriatric Assessment , Humans , Aged , Male , Female , Gastrointestinal Neoplasms/epidemiology , Gastrointestinal Neoplasms/complications , Middle Aged , Frailty/epidemiology , Registries , Aged, 80 and over , Alabama/epidemiology , Vulnerable Populations/statistics & numerical dataABSTRACT
BACKGROUND: A personalized approach to assessing medication knowledge may identify opportunities for education to support self-management of cystic fibrosis (CF). This project describes the development, scoring, and preliminary validity of the Personalized CF Medication Questionnaire (PCF-MQ), designed to assess knowledge of prescribed CF medication purpose, administration, and dose and frequency. METHODS: Participants completed the PCF-MQ, the Knowledge of Disease Management (KDM-CF), and the Cystic Fibrosis-Medication Beliefs Questionnaire (CF-MBQ). Prescribed regimens were abstracted from medical records. Eligibility criteria were age 12 years and older, diagnosed with CF, and prescribed a CF medication. Statistical analyses were conducted using R software. Spearman rho was used to test correlations between measures. RESULTS: Sixty people with CF (pwCF) were enrolled; three people reported a regimen that substantially deviated from the medical record and were excluded from the analyses. The mean (SD) age was 20.2 (7.3) years, 54 % were female, and 74 % had a FEV1pp ≥70 %. The mean (SD) PCF-MQ total score was 77.8 (12.3) and knowledge scores ranged from a low of 58.3 for levalbuterol to 100 for ivacaftor. The PCF-MQ total score correlated with the KDM total score and subscales (Spearman Rho= 0.32-0.59, p < 0.05) and was not correlated with the CF-MBQ subscales (p > 0.05)). CONCLUSIONS: The PCF-MQ was correlated with another measure of general CF knowledge, but not health beliefs; because of the small sample size, this should be considered preliminary evidence of its validity. Advantages over existing CF knowledge measures include its practicality for use to help assess pwCF's knowledge about their prescribed regimen.
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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.
Subject(s)
Behavior Therapy , Self-Management , Telemedicine , Treatment Adherence and Compliance , Humans , Self-Management/methods , Self-Management/psychology , Self-Management/statistics & numerical data , Telemedicine/methods , Telemedicine/statistics & numerical data , Telemedicine/standards , Treatment Adherence and Compliance/statistics & numerical data , Treatment Adherence and Compliance/psychology , Behavior Therapy/methods , Behavior Therapy/instrumentation , Behavior Therapy/statistics & numerical data , Behavior Therapy/standards , Chronic Disease/therapy , Chronic Disease/psychologyABSTRACT
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.
Subject(s)
Airway Obstruction , Pulmonary Disease, Chronic Obstructive , Humans , Nutrition Surveys , Cross-Sectional Studies , Pulmonary Disease, Chronic Obstructive/diagnosis , Pulmonary Disease, Chronic Obstructive/epidemiology , Dyspnea/diagnosis , Spirometry , Forced Expiratory VolumeABSTRACT
BACKGROUND: Food access is associated with higher gastrointestinal (GI) cancer mortality; however, its association with frailty, which is a predictor of premature mortality among older adults with cancer, is less understood. METHODS: The authors included 880 adults aged 60 years and older who were recently diagnosed with GI cancers and were undergoing self-reported geriatric assessment at their first prechemotherapy visit to the University of Alabama at Birmingham oncology clinic. Food access was measured using the 2019 US Department of Agriculture Economic Research Service designation low-income, low-access (LILA), classifying census tracts based on income and/or access to food stores at various distances. The primary outcome was frailty on the CARE (Cancer and Aging Resilience Evaluation) Frailty Index, a composite of the proportion of impaired geriatric assessment measures. The authors examined the LILA-frailty association with modified Poisson regression accounting for census-tract clustering. RESULTS: The median patient age was 69 years, 58.1% were men, 22.5% were non-Hispanic Black, 29.2% had colorectal cancer, 28.0% had pancreatic cancer, 70.1% presented with stage III/IV disease, and 34.9% were frail. A higher proportion in LILA areas were non-Hispanic Black (44.1% vs. 10.8%; p < .001) and had less education (high school or less: 48.1% vs. 37.9%; p = .020). Adjusting for age, race and ethnicity, sex, cancer type and stage, and education, an LILA designation was associated with 58% greater odds of worsening frailty status (95% confidence interval, 1.18-2.12). An analysis of LILA subcategories revealed that associations were maintained across all LILA measures. CONCLUSIONS: Poor food access was associated with a greater risk of frailty among newly diagnosed older adults with GI cancers before they received systemic treatment. Intervening on local food access, particularly in LILA areas, may be a target for improving rates of frailty and promoting health equity in this population.
Subject(s)
Frailty , Gastrointestinal Neoplasms , Aged , Male , Humans , Middle Aged , Female , Frailty/epidemiology , Frailty/diagnosis , Frail Elderly , Geriatric Assessment , Gastrointestinal Neoplasms/epidemiology , RegistriesABSTRACT
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.
Subject(s)
Surveys and Questionnaires , Adult , Humans , Feasibility StudiesABSTRACT
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.
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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.
Subject(s)
Cystic Fibrosis , Humans , Female , Male , Cystic Fibrosis/therapy , Gender Identity , EthnicityABSTRACT
BACKGROUND: Access to specialists facilitates appropriate Alzheimer's disease and related dementia (ADRD) medication use and adherence. However, there is little information on the impact of specialists' availability on ADRD medication adherence, especially in regions of the United States (US) where specialists are scarce, e.g., the Deep South (DS). OBJECTIVE: To ascertain whether the availability of specialty physicians in the DS and other US regions predicts ADRD medication adherence among community-dwelling older adultsMethods:We conducted secondary analyses of claims data for 54,194 Medicare beneficiaries with ADRD in 2013-2015. Medication adherence was measured using the proportion of days covered (PDC). Multivariable-adjusted Modified Poisson regression was used to examine associations of adherence with physicians' availability by region. RESULTS: The race/ethnicity distribution was 81.44% white, 9.17% black, 6.24% Hispanic, 2.25% Asian, and 1% other; 71.81% were female, and 42.36% were older than 85 years. Beneficiaries across regions differed in all individual and contextual characteristics except sex and comorbidities. Neurologists and psychiatrists' availability was not significantly associated with adherence (DSâ=â1.00, 0.97-1.03 & non-DSâ=â1.01, 1.00-1.01). Race and having ≥1 specialist visits were associated with a lower risk of adherence in both regions (pâ<â0.0001). Advanced age, dual Medicare/Medicaid eligibility, and living in non-large metropolitan areas, were associated with adherence in the non-DS region. CONCLUSION: Among older Americans with ADRD, a context defined by specialist availability does not affect adherence, but other context characteristics related to socioeconomic status may. Research should further examine the influence of individual and contextual factors on ADRD treatment among older adults.
Subject(s)
Alzheimer Disease , Medicare , Humans , Female , Aged , United States/epidemiology , Male , Alzheimer Disease/epidemiology , Comorbidity , Independent Living , Medication AdherenceABSTRACT
BACKGROUND: The protective advantage against atherosclerotic cardiovascular disease (ASCVD) experienced by women compared to men in the general population is diminished in some high- risk populations. People with HIV have a higher risk for ASCVD compared to the general population. OBJECTIVE: Compare the incidence of ASCVD among women versus men with HIV. METHODS: We analyzed data from women ( n â=â17 118) versus men ( n â=â88 840) with HIV, and women ( n â=â68 472) and men ( n â=â355 360) matched on age, sex, and calendar year of enrollment without HIV who had commercial health insurance in the MarketScan database between 2011 and 2019. ASCVD events during follow-up, including myocardial infarction, stroke, and lower-extremity artery disease, were identified using validated claims-based algorithms. RESULTS: Among those with and without HIV, the majority of women (81.7%) and men (83.6%) were <55âyears old. Over a mean follow-up of 2.25-2.36âyears depending on sex-HIV sub-group, the ASCVD incidence rate per 1000 person-years was 2.87 [95% confidence interval (CI) 2.35, 3.40] and 3.61 (3.35, 3.88) among women and men with HIV, respectively, and 1.24 (1.07, 1.42) and 2.57 (2.46, 2.67) among women and men without HIV, respectively. After multivariable adjustment, the hazard ratio for ASCVD comparing women to men was 0.70 (95% CI 0.58, 0.86) among those with HIV and 0.47 (0.40, 0.54) among those without HIV ( P -interactionâ=â0.001). CONCLUSION: The protective advantage of female sex against ASCVD observed in the general population is diminished among women with HIV. Earlier and more intensive treatment strategies are needed to reduce sex-based disparities.
Subject(s)
Atherosclerosis , Cardiovascular Diseases , HIV Infections , Myocardial Infarction , Female , Humans , Male , Middle Aged , Cardiovascular Diseases/epidemiology , Cardiovascular Diseases/complications , Sex Characteristics , HIV Infections/complications , HIV Infections/epidemiology , Atherosclerosis/epidemiology , Atherosclerosis/etiology , Myocardial Infarction/epidemiology , Risk Factors , Risk AssessmentABSTRACT
BACKGROUND: Although specific social determinants of health have been associated with disparities in surgical outcomes, there exists a gap in knowledge regarding the mechanisms of these associations. Gaining perspectives from multiple socioecological levels can help elucidate these mechanisms. Our study aims to identify social determinants of health that act as barriers or facilitators to surgical care among colorectal surgery stakeholders. METHODS: We recruited participants representing 5 socioecological levels: patients (individual); caregivers/surgeons (interpersonal); and leaders in hospitals (organizational), communities (community), and government (policy). Patients participated in focus groups, and the remaining participants underwent individual interviews. Semistructured interview guides were used to explore barriers and facilitators to surgical care at each socioecological level. Transcripts were analyzed by 3 coders in an inductive thematic approach with content analyses. The intercoder agreement was 93%. RESULTS: Six patient focus groups (total n = 18) and 12 key stakeholder interviews were conducted. The mean age of patients was 54.7 years, 66% were Black, and 61% were female. The most common diseases were colorectal cancer (28%), inflammatory bowel disease (28%), and diverticulitis (22%). Key social determinants of health impacting surgical care emerged at each level: individual (clear communication, mental stress), interpersonal (provider communication and trust, COVID-related visitation restrictions), organizational (multiple forms of contact, quality educational materials, scheduling systems, discrimination), community (community and family support and transportation), and policy (charity care, patient advocacy organizations, insurance coverage). CONCLUSION: Key social determinants of health-impacting care among colorectal surgery patients emerged at each socioecological level and may provide targets for interventions to reduce surgical disparities.
Subject(s)
COVID-19 , Colorectal Surgery , Humans , Female , Middle Aged , Male , Qualitative Research , Focus Groups , Health Services AccessibilityABSTRACT
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.
Subject(s)
Cystic Fibrosis , Self-Management , Telemedicine , Adolescent , Child , Humans , Cystic Fibrosis/therapy , Patient-Centered Care , Quality of LifeABSTRACT
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.
Subject(s)
Pulmonary Disease, Chronic Obstructive , Humans , Black or African American , Cohort Studies , Cross-Sectional Studies , Forced Expiratory Volume , Longitudinal Studies , Pulmonary Disease, Chronic Obstructive/diagnosis , Pulmonary Disease, Chronic Obstructive/epidemiology , Spirometry , Vital Capacity , Middle Aged , White , Smoking/adverse effectsABSTRACT
Background: Enhanced recovery programs (ERPs) improve outcomes, but over 20 % of patients fail ERP and the contribution of social vulnerability is unknown. This study aimed to characterize the association between social vulnerability and ERP adherence and failure. Methods: This was a retrospective cohort study of colorectal surgery patients between 2015 and 2020 utilizing ACS-NSQIP data. Patients who failed ERP (LOS > 6 days) were compared to patients not failing ERP. The CDC's social vulnerability index (SVI) was used to assess social vulnerability. Result: 273 of 1191 patients (22.9 %) failed ERP. SVI was a significant predictor of ERP failure (OR 4.6, 95 % CI 1.3-16.8) among those with >70 % ERP component adherence. SVI scores were significantly higher among patients non-adherent with 3 key ERP components: preoperative block (0.58 vs. 0.51, p < 0.01), early diet (0.57 vs. 0.52, p = 0.04) and early foley removal (0.55 vs. 0.50, p < 0.01). Conclusions: Higher social vulnerability was associated with non-adherence to 3 key ERP components as well as ERP failure among those who were adherent with >70 % of ERP components. Social vulnerability needs to be recognized, addressed, and included in efforts to further improve ERPs. Key message: Social vulnerability is associated with non-adherence to enhanced recovery components and ERP failure among those with high ERP adherence. Social vulnerability needs to be addressed in efforts to improve ERPs.
ABSTRACT
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.
Subject(s)
Asthma , Insurance, Health , Child , Humans , Lung , Asthma/epidemiology , Outcome Assessment, Health Care , SmokeABSTRACT
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.