2017 — 2021 |
Griffith, James William Paasche-Orlow, Michael |
R01Activity Code Description: To support a discrete, specified, circumscribed project to be performed by the named investigator(s) in an area representing his or her specific interest and competencies. |
Reducing Assessment Barriers For Patients With Low Literacy @ Northwestern University At Chicago
Background: This R01 is in response to PAR-13-130: Understanding and Promoting Health Literacy (R01). Health literacy is the degree to which an individual can obtain, process, and understand basic health information, which includes the ability to understand written questionnaires. Almost none of the survey instruments being used across the country has been validated for use with people who have low health literacy. This fundamental cross-cutting weakness in survey methods undermines the accuracy of a broad swath of data collected in research and clinical care. Written questionnaires are omnipresent in healthcare, including patient demographic forms, symptom assessment tools, and patient-reported outcome questionnaires. The NIH has invested heavily in the creation of the NIH Patient-Reported Outcomes Measurement Information System (PROMIS), which has significantly advanced health measurement. But PROMIS, like almost all survey instruments, has not been validated for use by people with low health literacy and it exists in a written format that may be inaccessible to individuals with low literacy. Aims: We will remove health literacy barriers to accurate survey research by: 1) evaluating differences in psychometric properties by health literacy of PROMIS questionnaires as well as other commonly used surveys; 2) identifying and characterizing survey items that do not work properly for people with low health literacy; and, 3) creating a guide for survey item development and evaluation for different modes of test administration that are most appropriate for people who have low health literacy. Methods: We will recruit a large sample of participants across two primary care networks at Northwestern Universtiy and Boston University Medical Center. The sample will be evenly balanced across English versus Spanish language and adequate versus low health literacy. These assessments will be given at multiple time points as part of a longitudinal study. We will use state-of-the-art psychometric methods to determine differences among participants with low versus adequate health literacy, and whether these differences can be overcome by alternative modes of survey administration. Impact: We will identify survey item characteristics that are associated with differential item functioning by health literacy for different modes of test administration. Based on our analyses, we will create a guide for survey item development and evaluation. This will lead to assessments in healthcare that are more accessible for people with low health literacy and more accurate. This project has broad relevance insofar as many widely-used health questionnaires have not been validated for use with people who have low health literacy. We will present a generalizable approach that can rapidly influence the mode of data collection from patients. We will also present modes of data analyses oriented toward understanding health-literacy, which is a critical component of survey validation activities.
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0.958 |
2019 — 2021 |
Griffith, James William Helfand, Brian Todd (co-PI) [⬀] Kenton, Kimberly Sue |
U01Activity Code Description: To support a discrete, specified, circumscribed project to be performed by the named investigator(s) in an area representing his or her specific interest and competencies. |
Lurn Ii: Enhanced Characterization of Patients With Luts Using Biopsychosocial Approaches @ Northwestern University At Chicago
The Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN) was assembled in 2012 to increase our understanding of lower urinary tract symptoms (LUTS) by identifying important subtypes of patients with LUTS, and improving the measurement of patient experiences of LUTS. The Network's approach to defining patient subtypes was based on a re-sampling-based consensus clustering approach using self- reported patient data, resulting in the identification of novel LUTS-based clusters that are statistically and clinically distinct. The approach to improving the measurement of patient reports of LUTS was to systematically develop a new, high-quality item bank based on qualitative input from patient, community participants, internists, urologists, urogynecologists, and clinical researchers. Finally, in order to understand some of the pathophysiologic basis underlying lower urinary tract dysfunction, biologic information was obtained and analyzed from patient samples and imaging. After a successful initial 5-year funding cycle, LURN is prepared to build on the knowledge gained and take the next steps with the following Specific Aims: 1) To test and refine the original clustering model with a cohort including a wider range of symptom severity and a wider range of physiological measures, 2) To identify protein biomarker signatures contained within plasma that can be used to identify specific subgroups of men and women with LUTS 3) To determine phenotypic characteristics of women with lower urinary tract symptoms (LUTS) by measuring the functional components of the lower urinary tract, 4) To validate a comprehensive outcome tool for men and women with LUTS, and 5) To determine the role of psychosocial stress ? especially adverse childhood experiences ? in the severity and course of LUTS. The LURN II will recruit 1380 patients, stratified by sex. Our site will recruit 1/6 of these participants (N = 230). We have a multi-method approach to phenotyping patients with LUTS, which will include questionnaires, laboratory tests, mobile apps, and urodynamics of the bladder and urethra. Data will be analyzed using resampling-based cluster analyses, as well as longitudinal modelling of symptoms over time. We hypothesize that our biopsychosocial approach to assessing patients with LUTS will yield clinically- meaningful patient clusters, which in turn can be linked to causal mechanisms as well as treatment options. Moreover, we hypothesize that modifiable risk factors will be related to the course of LUTS over time, creating novel avenues for treatment. The impact of this study will lend itself to an improved understanding of the causes and nature of LUTS, which will set the stage for clinical trials to improve quality of life for these patients.
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0.958 |
2020 — 2021 |
Griffith, James William Kenton, Kimberly Sue Simon, Melissa A. |
U01Activity Code Description: To support a discrete, specified, circumscribed project to be performed by the named investigator(s) in an area representing his or her specific interest and competencies. |
Northwestern University Plus Clinical Site @ Northwestern University At Chicago
Project Summary Lower urinary tract symptoms (LUTS) are common in women and negatively impact activities of daily living and quality of life, resulting in medical and psychological morbidity and enormous economic burden. Because of the deleterious consequences of LUTS on women, understanding optimal bladder health is essential. Given the complexity and heterogeneity of women with urinary symptoms, transdisciplinary research is needed to screen for risk factors for the development of bladder symptoms, protective factors that facilitate optimized bladder health, and mechanisms to target for prevention programs to disrupt causal pathways to bladder symptoms To date, the literature on LUTS has mostly focused on non-Hispanic White women with health insurance who present with symptoms and are already engaged with the healthcare system. Thus, extant prevention and treatment approaches are not generalizable to vulnerable populations like minority and underserved women. Significant gaps remain in understanding bladder health for minority and underserved women, where significant health disparities exist. Well-designed longitudinal cohort studies of urinary symptoms in diverse samples in which racial/ethnic minorities are well represented are severely lacking. Consistent with the PLUS Research Consortium, our objective is to move beyond the absence of symptoms and optimize bladder health as ?a complete state of physical, mental, and social well-being related to bladder function.? Therefore, the primary goal of this project is to assess the influence of biological, psychosocial (mind/behavior), interpersonal, institutional, environmental, and societal factors on bladder health among diverse women using qualitative and quantitative approaches within the PLUS framework. The mixed- methods approach of this project includes: Specific Aim 1. Conduct a longitudinal, observational study of bladder health in a diverse cohort of adolescent and adult women with respect to race/ethnicity, age, income, education, health literacy, insurance status, sexual orientation, and employment, Specific Aim 2. Determine factors and behaviors that influence bladder health in diverse women, and Specific Aim 3. Create a screening tool for bladder health that is reliable and valid across diverse women. We hypothesize that social determinants of health, implicit bias, and discrimination will be significantly related to the trajectory of bladder health and engagement with the healthcare system over time for LUTS. We also hypothesize that the screener we develop will assess bladder health in all women (including diverse populations in which disparities exist) and will identify women at risk for future bladder symptoms with high reliability, validity, accuracy, sensitivity, and specificity and minimal burden to the respondent. The impact of this U01 will be the curation of a novel knowledge base on risk and protective factors in diverse populations of women.
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0.958 |