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An electronic health record-based strategy to recruit for a Patient Advisory Council for Research: Implications for inclusion

Bougrab, Nassira; Li, Dadong; Trachtman, Howard; Sherman, Scott; Thornton, Rachel; Langford, Aisha T
In 2017, the NYU Clinical and Translational Science Institute's Recruitment and Retention Unit created a Patient Advisory Council for Research (PACR) to provide feedback on clinical trials and health research studies. We collaborated with our clinical research informatics team to generate a random sample of patients, based on the International Classification of Diseases, Tenth Revision codes and demographic factors, for invitation via the patient portal. This approach yielded in a group that was diverse with regard to age, race/ethnicity, sex, and health conditions. This report highlights the benefits and limitations of using an electronic health record-based strategy to identify and recruit members for a PACR.
PMCID:7103472
PMID: 32257413
ISSN: 2059-8661
CID: 4377262

Prediabetes and Risk for Cardiovascular Disease by Hypertension Status in Black Adults: The Jackson Heart Study

Hubbard, Demetria; Colantonio, Lisandro D; Tanner, Rikki M; Carson, April P; Sakhuja, Swati; Jaeger, Byron C; Carey, Robert M; Cohen, Laura P; Shimbo, Daichi; Butler, Mark; Bertoni, Alain G; Langford, Aisha T; Booth, John N; Kalinowski, Jolaade; Muntner, Paul
OBJECTIVE:Recent studies have suggested that prediabetes is associated with an increased risk for cardiovascular disease (CVD) only among individuals with concomitant hypertension. RESEARCH DESIGN AND METHODS/METHODS:between 5.7 and 6.4% (39 and 46 mmol/mol). Hypertension was defined as systolic/diastolic blood pressure ≥140/90 mmHg and/or self-reported antihypertensive medication use. Participants were followed for incident CVD events and all-cause mortality through 31 December 2014. RESULTS:Overall, 35% of JHS participants did not have prediabetes or hypertension, 18% had prediabetes alone, 22% had hypertension alone, and 25% had both prediabetes and hypertension. Compared with participants without either condition, the multivariable-adjusted hazard ratios for CVD events among participants with prediabetes alone, hypertension alone, and both prediabetes and hypertension were 0.86 (95% CI 0.51, 1.45), 2.09 (1.39, 3.14), and 1.93 (1.28, 2.90), respectively. Among participants with and without hypertension, there was no association between prediabetes and an increased risk for CVD (0.78 [0.46, 1.34] and 0.94 [0.70, 1.26], respectively). No association was present between prediabetes and all-cause mortality among participants with or without hypertension. CONCLUSIONS:Regardless of hypertension status, prediabetes was not associated with an increased risk for CVD or all-cause mortality in this cohort of black adults.
PMID: 31591089
ISSN: 1935-5548
CID: 4129432

Association Between High Perceived Stress Over Time and Incident Hypertension in Black Adults: Findings From the Jackson Heart Study

Spruill, Tanya M; Butler, Mark J; Thomas, S Justin; Tajeu, Gabriel S; Kalinowski, Jolaade; Castañeda, Sheila F; Langford, Aisha T; Abdalla, Marwah; Blackshear, Chad; Allison, Matthew; Ogedegbe, Gbenga; Sims, Mario; Shimbo, Daichi
Background Chronic psychological stress has been associated with hypertension, but few studies have examined this relationship in blacks. We examined the association between perceived stress levels assessed annually for up to 13 years and incident hypertension in the Jackson Heart Study, a community-based cohort of blacks. Methods and Results Analyses included 1829 participants without hypertension at baseline (Exam 1, 2000-2004). Incident hypertension was defined as blood pressure≥140/90 mm Hg or antihypertensive medication use at Exam 2 (2005-2008) or Exam 3 (2009-2012). Each follow-up interval at risk of hypertension was categorized as low, moderate, or high perceived stress based on the number of annual assessments between exams in which participants reported "a lot" or "extreme" stress over the previous year (low, 0 high stress ratings; moderate, 1 high stress rating; high, ≥2 high stress ratings). During follow-up (median, 7.0 years), hypertension incidence was 48.5%. Hypertension developed in 30.6% of intervals with low perceived stress, 34.6% of intervals with moderate perceived stress, and 38.2% of intervals with high perceived stress. Age-, sex-, and time-adjusted risk ratios (95% CI) associated with moderate and high perceived stress versus low perceived stress were 1.19 (1.04-1.37) and 1.37 (1.20-1.57), respectively (P trend<0.001). The association was present after adjustment for demographic, clinical, and behavioral factors and baseline stress (P trend=0.001). Conclusions In a community-based cohort of blacks, higher perceived stress over time was associated with an increased risk of developing hypertension. Evaluating stress levels over time and intervening when high perceived stress is persistent may reduce hypertension risk.
PMID: 31615321
ISSN: 2047-9980
CID: 4146042

Patient Engagement in Medical Research Among Older Adults: Analysis of the Health Information National Trends Survey

Gerido, Lynette Hammond; Tang, Xiang; Ernst, Brittany; Langford, Aisha; He, Zhe
BACKGROUND:By 2035, it is expected that older adults (aged 65 years and older) will outnumber children and will represent 78 million people in the US population. As the aging population continues to grow, it is critical to reduce disparities in their representation in medical research. OBJECTIVE:This study aimed to describe sociodemographic characteristics and health and information behaviors as factors that influence US adults' interest in engaging in medical research, beyond participation as study subjects. METHODS:Nationally representative cross-sectional data from the 2014 Health Information National Trends Survey (N=3677) were analyzed. Descriptive statistics and weighted multivariable logistic regression analyses were performed to assess predictors of one's interest in patient engagement in medical research. The independent variables included age, general health, income, race and ethnicity, education level, insurance status, marital status, and health information behaviors. RESULTS:We examined the association between the independent variables and patient interest in engaging in medical research (PTEngage_Interested). Patient interest in engaging in medical research has a statistically significant association with age (adjusted P<.01). Younger adults (aged 18-34 years), lower middle-aged adults (aged 35-49 years), and higher middle-aged adults (aged 50-64 years) indicated interest at relatively the same frequency (29.08%, 29.56%, and 25.12%, respectively), but older adults (aged ≥65 years) expressed less interest (17.10%) than the other age groups. After the multivariate model was run, older adults (odds ratio 0.738, 95% CI 0.500-1.088) were found to be significantly less likely to be interested in engaging in medical research than adults aged 50 to 64 years. Regardless of age, the strongest correlation was found between interest in engaging in medical research and actively looking for health information (P<.001). Respondents who did not seek health information were significantly less likely than those who did seek health information to be interested in engaging in medical research. CONCLUSIONS:Patients' interest in engaging in medical research vary by age and information-seeking behaviors. As the aging population continues to grow, it is critical to reduce disparities in their representation in medical research. Interest in participatory research methods may reflect an opportunity for consumer health informatics technologies to improve the representation of older adults in future medical research.
PMID: 31663860
ISSN: 1438-8871
CID: 4175732

Knowledge and use of recruitment support tools among study coordinators at an academic medical center: The Novel Approaches to Recruitment Planning Study

Scott, Ebony; McComb, Bryan; Trachtman, Howard; Mannon, Lois; Rosenfeld, Peri; Thornton, Rachel; Bougrab, Nassira; Sherman, Scott; Langford, Aisha
Background/UNASSIGNED:Study coordinators play an essential role on study teams; however, there remains a paucity of research on the supports and services they need to effectively recruit and retain study participants. Methods/UNASSIGNED:A cross-sectional survey was conducted with 147 study coordinators from a large academic medical center. Survey items assessed barriers and facilitators to recruitment and retention, anxiety about reaching enrollment numbers, confidence for talking to potential study participants about research involvement, awareness and use of CTSA resources, and PI involvement with recruitment planning. Results/UNASSIGNED:Significant associations were found between anxiety about reaching target enrollment numbers and whether the study coordinator was the primary person responsible for developing a recruitment strategy. Three years or more serving as a study coordinator and levels of anxiety for reaching enrollment numbers was also significant. Conclusion/UNASSIGNED:More institutional level supports and formal training opportunities are needed to enhance study coordinators' effectiveness to recruit participants.
PMCID:6661275
PMID: 31372576
ISSN: 2451-8654
CID: 4011492

Barriers and Facilitators to the Implementation of a Mobile Insulin Titration Intervention for Patients With Uncontrolled Diabetes: A Qualitative Analysis

Rogers, Erin; Aidasani, Sneha R; Friedes, Rebecca; Hu, Lu; Langford, Aisha T; Moloney, Dana N; Orzeck-Byrnes, Natasha; Sevick, Mary Ann; Levy, Natalie
BACKGROUND:In 2016, a short message service text messaging intervention to titrate insulin in patients with uncontrolled type 2 diabetes was implemented at two health care facilities in New York City. OBJECTIVE:This study aimed to conduct a qualitative evaluation assessing barriers to and the facilitators of the implementation of the Mobile Insulin Titration Intervention (MITI) program into usual care. METHODS:We conducted in-depth interviews with 36 patients enrolled in the MITI program and the staff involved in MITI (n=19) in the two health care systems. Interviews were transcribed and iteratively coded by two study investigators, both inductively and deductively using a codebook guided by the Consolidated Framework for Implementation Research. RESULTS:Multiple facilitator themes emerged: (1) MITI had strong relative advantages to in-person titration, including its convenience and time-saving design, (2) the free cost of MITI was important to the patients, (3) MITI was easy to use and the patients were confident in their ability to use it, (4) MITI was compatible with the patients' home routines and clinic workflow, (5) the patients and staff perceived MITI to have value beyond insulin titration by reminding and motivating the patients to engage in healthy behaviors and providing a source of patient support, and (6) implementation in clinics was made easy by having a strong implementation climate, communication networks to spread information about MITI, and a strong program champion. The barriers identified included the following: (1) language limitations, (2) initial nurse concerns about the scope of practice changes required to deliver MITI, (3) initial provider knowledge gaps about the program, and (4) provider perceptions that MITI might not be appropriate for some patients (eg, older or not tech-savvy). There was also a theme that emerged during the patient and staff interviews of an unmet need for long-term additional diabetes management support among this population, specifically diet, nutrition, and exercise support. CONCLUSIONS:The patients and staff were overwhelmingly supportive of MITI and believed that it had many benefits and that it was compatible with the clinic workflow and patients' lives. Initial implementation efforts should address staff training and nurse concerns. Future research should explore options for integrating additional diabetes support for patients.
PMID: 31368439
ISSN: 2291-5222
CID: 4011252

Impact of Timing on Measurement of Decision Quality and Shared Decision Making: Longitudinal Cohort Study of Breast Cancer Patients

Sepucha, Karen R; Langford, Aisha T; Belkora, Jeffrey K; Chang, Yuchiao; Moy, Beverly; Partridge, Ann H; Lee, Clara N
Purpose.The objective of this study was to examine whether scores of shared decision-making measures differ when collected shortly after (1 month) or long after (1 year) breast cancer surgical treatment decisions. Methods. Longitudinal, multisite survey of breast cancer (BC) patients, with measurements at 1 month and 1 year after surgery at 4 cancer centers. Patients completed the BC Surgery Decision Quality Instrument (used to generate a knowledge score, ratings of goals, and concordance with treatment preferences) and Shared Decision Making (SDM) Process survey at both time points. We tested several hypotheses related to the scores over time, including whether the scores discriminated between sites that did and did not offer formal decision support services. Exploratory analyses examined factors associated with large increases and decreases in scores over time. Results. Across the 4 sites, 229 patients completed both assessments. The mean total knowledge scores (69.2% [SD 16.6%] at 1 month and 69.4% [SD 17.7%] at 1 year, P = 0.86), SDM Process scores (2.7 [SD 1.1] 1 month v. 2.7 [SD 1.2] 1 year, P = 0.68), and the percentage of patients receiving their preferred treatment (92% at 1 month and 92% at 1 year, P = 1.0) were not significantly different over time. The site using formal decision support had significantly higher knowledge and SDM Process scores at 1 month, and only the SDM Process scores remained significantly higher at 1 year. A significant percentage of patients had large changes in their individual knowledge and SDM Process scores, with increases balancing out decreases. Conclusion. For population-level assessments, it is reasonable to survey BC patients up to a year after the decision, greatly increasing feasibility of measurement. For those evaluating decision support interventions, shorter follow-up is more likely to detect an impact on knowledge scores.
PMID: 31354095
ISSN: 1552-681x
CID: 4010502

Perceived Patient-Provider Communication Quality and Sociodemographic Factors Associated With Watching Health-Related Videos on YouTube: A Cross-Sectional Analysis

Langford, Aisha; Loeb, Stacy
BACKGROUND:Approximately 73% of US adults use YouTube, making it the most popular social media platform. Misinformation on social media is a growing concern; recent studies show a high proportion of misinformative health-related videos. Several studies on patient-provider communication and general health information seeking have been conducted. However, few studies to date have examined the potential association between patient-provider communication and health information seeking on specific social media platforms such as YouTube. A better understanding of this relationship may inform future health communication interventions. OBJECTIVE:The aim was to use nationally representative cross-sectional data to describe the association between perceived patient-provider communication quality and sociodemographic factors on watching YouTube health-related videos. METHODS:Data from the 2018 Health Information National Trends Survey were analyzed (N=3504). The primary outcome was whether participants watched a health-related video on YouTube over the past 12 months. A patient-provider communication composite score was created by summing responses about how often providers did the following: (1) gave you the chance to ask all the health-related questions you had, (2) gave attention to your feelings, (3) involved you in health care decisions as much as you wanted, (4) made sure that you understood the things you needed to do to take care of your health, (5) explained things in a way that you could understand, (6) spent enough time with you, and (7) helped you deal with feelings of uncertainty. Sociodemographic factors included age, gender, race/ethnicity, and education. Descriptive statistics and multivariable logistic regression were conducted. RESULTS:Approximately 1067 (35% weighted prevalence) participants reported watching a health-related video on YouTube. Higher perceived quality of patient-provider communication on the composite score was significantly associated with lower odds of watching health-related videos on YouTube. Regarding sociodemographic factors, increasing age and being a high school graduate (compared with college graduate) were associated with lower odds of watching health-related videos on YouTube; whereas, Hispanic and non-Hispanic Asians were more likely to have watched a health-related video on YouTube. For individual aspects of patient-physician communication, two of seven patient-provider communication variables were significant. Those who reported that providers "sometimes" spent enough time with them had higher odds of watching a health-related video on YouTube, compared with those who said providers "always" spent enough time with them. Participants reporting that they "never" have a chance to ask all their health-related questions also had higher odds of watching health-related videos on YouTube compared with those who reported "always." CONCLUSIONS:Higher perceived quality of patient-provider communication is associated with lower odds of watching health-related videos on YouTube. When providers do not spend enough time or give an opportunity to ask questions, patients are more likely to pursue health information on social media.
PMID: 31102372
ISSN: 1438-8871
CID: 3926592

Aiming for equity: Exploring patient preferences for assistance with social determinant of health (SDOH) barriers in patients with uncontrolled type 2 insulin-dependent diabetes (IDDM) seeking care at a safety-net hospital [Meeting Abstract]

Levy, N K; Park, A; Solis, D; Wang, B; Langford, A; Hu, L; Rogers, E
Background: Health equity can broadly be defined as giving people the opportunities and resources needed to maximize health regardless of socially determined circumstances. SDoH are economic and social conditions that lead to differences in health status. We practice medicine at a mission driven safety-net hospital and provide care to patients with uncontrolled type 2 IDDM. Understanding not only these patients' SDoH barriers, but also their preferences for assistance, is the first step in providing equitable help.
Method(s): We used surveys and interviews to learn about 3 themes: SDoH barriers that impacted the ability to care for one's diabetes, desirable service features of any assistance program, and the types of services patients feel are needed.
Result(s): We learned that 84% of patients had > 1 barrier to health care access, 54% were unable to pay for > 1 essential item when it was needed, 53% reported > 1 barrier in their built environment, 47% reported > 1 issue with health literacy, and 37% shared that they only saw or talked to someone that they cared about or felt close to < 2 times per week. In the process of defining SDoH barriers, we also learned about unhealthy behavior patterns: 69% of patients have inadequate fruit and vegetable consumption, 57% get no leisure-time physical activity, 48% sometimes or often miss a day of checking their blood sugar, 35% sometimes or often miss doses of their medications and 30% are unable to follow up with their doctor in the time frame they are given. Despite their obstacles, patients felt that they didn't need " help". While they did share preferences on desirable service features, they volunteered very little regarding desirable types of services. Their lack of suggestions on service features was a finding in and of itself, warranting further exploration. In the end, we gauged interest in currently available resources at our hospital and in NYC, as well as our team's ideas for potential new programs to tackle some of the unhealthy behavior patterns we learned about (see types of services below). The service features that were a priority for any assistance program were: doctor knows about the program (86%), cost (87%), program is in-person (83%), program sends reminders (74%), program is a group class (74%), program is close to home (70%). In terms of types of services, 70% of patients want to learn about Farmer's markets as a source to eat more produce, 65% want to use the pedometer program we are developing and up to 45% want to use Bellevue's new Diabetes Patient Navigator program for assistance with barriers to health care access, taking diabetes medications, and checking blood sugar.
Conclusion(s): Patients with uncontrolled type 2 IDDM at our safety-net hospital have significant SDoH barriers, multiple service feature preferences, and are interested in programs currently available and under development. Understanding patient preferences for assistance is a key step in creating solutions that provide equity for underserved patients in need
EMBASE:629001752
ISSN: 1525-1497
CID: 4053172

Dissemination of Misinformative and Biased Information about Prostate Cancer on YouTube

Loeb, Stacy; Sengupta, Shomik; Butaney, Mohit; Macaluso, Joseph N; Czarniecki, Stefan W; Robbins, Rebecca; Braithwaite, R Scott; Gao, Lingshan; Byrne, Nataliya; Walter, Dawn; Langford, Aisha
YouTube is a social media platform with more than 1 billion users and >600000 videos about prostate cancer. Two small studies examined the quality of prostate cancer videos on YouTube, but did not use validated instruments, examine user interactions, or characterize the spread of misinformation. We performed the largest, most comprehensive examination of prostate cancer information on YouTube to date, including the first 150 videos on screening and treatment. We used the validated DISCERN quality criteria for consumer health information and the Patient Education Materials Assessment Tool, and compared results for user engagement. The videos in our sample had up to 1.3 million views (average 45223) and the overall quality of information was moderate. More videos described benefits (75%) than harms (53%), and only 50% promoted shared decision-making as recommended in current guidelines. Only 54% of the videos defined medical terms and few provided summaries or references. There was a significant negative correlation between scientific quality and viewer engagement (views/month p=0.004; thumbs up/views p=0.015). The comments section underneath some videos contained advertising and peer-to-peer medical advice. A total of 115 videos (77%) contained potentially misinformative and/or biased content within the video or comments section, with a total reach of >6 million viewers. PATIENT SUMMARY: Many popular YouTube videos about prostate cancer contained biased or poor-quality information. A greater number of views and thumbs up on YouTube does not mean that the information is trustworthy.
PMID: 30502104
ISSN: 1873-7560
CID: 3541052