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This study is part of the Seek, Test, Treat and Retain (STTR) Collaboration Project that involved over twenty studies in the fields of HIV and drug abuse. All studies were independently developed, but were chosen for the collaboration because they focused on one or more steps of the HIV treatment cascade: Seek, Test, Treat and Retain. As part of STTR Collaboration Project, the studies were grouped into Criminal Justice-related studies and Vulnerable Population-related studies. The data collected by these studies included twelve common domains (e.g., Demographic characteristics, Mental Health) in each of which a shared questionnaire or instrument was taken up by the studies and adapted to fit the study.

This study was a Randomized Controlled Trial (RCT) of a peer-based health system navigation intervention among individuals assigned to the intervention group compared with those assigned to the control group (usual care transitional management services). Baseline interviews were conducted during incarceration while the follow-up interviews were conducted at months 2, 6 and 12 following release from jail to the community. For participants who were re-incarcerated during, interviews were conducted in the jail setting to ensure high study retention. The goal was to improve engagement and retention in HIV care.

Purpose: Develop an easy-to-use data product to facilitate comparative effectiveness research involving complex patients.

Scope: Claims data can be difficult to use, requiring experience to most appropriately aggregate to the patient level and to create meaningful variables such as treatments, covariates, and endpoints. Easy to use data products will accelerate meaningful comparative effectiveness research (CER).

Methods: This project used data from the Medicare Chronic Condition Data Warehouse for patients hospitalized with acute myocardial infarction (AMI) or stroke in 2007 with two-year follow-up and one-year pre-admission baseline. The project joined over 100 raw data files per condition to create research-ready person- and service-level analytic files, code templates, and macros while at the same time adding uniformity in measures of comorbid conditions and other covariates. The data product was tested in a project on statin effectiveness in older patients with multiple comorbidities.

Results: A programmer/analyst with no administrative claims data experience was able to use the data product to create an analytic dataset with minimal support aside from the documentation provided. Analytic dataset creation used the conditions, procedures, and timeline macros provided. The data structure created for AMI adapted successfully for stroke. Complexity increased and statin treatment decreased with age. The two-year survival benefit of statins post-AMI increased with age.

Conclusion: Claims data can be made more user-friendly for CER research on complex conditions. The data product should be expanded by refreshing the cohort and increasing follow-up. Action is warranted to increase the rate of statin use among the oldest patients.

Data Access: These data are not available from ICPSR. The data cannot be made publicly available. Data are stored on University of Iowa College of Public Health secure servers, and may be used only for projects covered within the aims of the original research protocol and Centers for Medicare and Medicaid Services (CMS)-approved data use agreement. Data sharing is allowed only for research protocols approved under data re-use requests by the CMS privacy board. The CMS process for data re-use requests is described at Research Data Assistance Center (ResDac). Please note that as of May 2013, the DUA covering this work is set to expire February 1, 2014. Thereafter, per the terms of the DUA, datasets created for this project may not be available.

User guides are available from ICPSR for detailed descriptions of the data products, including a user guide for Acute Myocardial Infarction (AMI) Analytic Files and a user guide for Stroke and Transient Ischemic Attack (TIA) Analytic Files. Data dictionaries are available upon request. Please contact Nick Rudzianski ([email protected] or 319-335-9783) for more information.

Upper body breast-cancer related lymphedema (BCRL) is a persistent adverse outcome of cancer treatment that affects the physical health and quality of life of up to 1 in 3 of the 2.9 million breast cancer survivors in the US. For those with BCRL, known predictors of progression include BMI, type of surgery and radiation treatment, all of which are associated with social factors. This study was designed to examine the role of finances in long-term BCRL management and progression, and compare the financial experiences of patients managing BCRL to those who do not.

In 2016, the study team conducted 40 interviews with women living in Philadelphia and New Jersey, half of whom had BCRL and half who were breast cancer survivors who had not been diagnosed with BCRL. Participants were sampled from a larger longitudinal study collecting quantitative data on patient's healthcare spending over the course of a year. At the 6-month time point, 40 participants were selected randomly within strata of race, age, and socioeconomic position for 30-minute semi-structured interviews on changes in their economic situation as a result of breast cancer treatment, when applicable, both cancer treatment and ongoing BCRL management. Questions were designed to cover the ways in which costs for treatment affected the patient, their family, and their anticipated future behaviors around health or finance. Themes include interactions with insurance companies, costs of medications, and charitable support services for assisting with breast cancer and BCRL financial costs.

This study consists of a two-group, randomized, controlled comparative effectiveness trial with 300 individuals from Appalachian Kentucky who do not have a primary care provider (and thus are not able to receive the standard of care without intercession) and who are at risk for CVD (cardiovascular disease) by virtue of having two or more modifiable CVD risk factors. The researchers compared (1) the standard of care alone, referral to a primary care provider for management of CVD risk factors, with (2) standard of care supplemented by patient-centered, culturally appropriate, self-care CVD risk reduction intervention (HeartHealth) designed to improve multiple CVD risk factors while overcoming barriers to success.

The researchers compared the 4 month (short-term) and 1 year (long-term) impact of the interventions on: 1) CVD risk factors selected by patients (i.e., tobacco use, blood pressure, lipid profile, HgA1c for diabetics, body mass index, waist circumference, depressive symptoms, or physical activity level); 2) all CVD risk factors for each patient; 3) quality of life; 4) patient and healthcare provider satisfaction; 5) desirability and adoptability by assessing adherence to recommended CVD risk reduction protocols, and retention of recruited individuals.

Demographic variables include gender, age, ethnicity, marital status, employment status, and level of education.

The Stroke Recovery in Underserved Populations 2005-2006 study was created to address the National Institute on Aging (NIA) Request For Application entitled "Research on Mind-Body Interactions and Health" (RFA OD-03-008). It addressed the NIA interest in "the impact of optimism, happiness, or a positive attitude on well-being and health; and social functioning and health." The study examined how positive emotion (e.g., joy, gratitude, love, contentment) and social networks independently and interactively contribute to recovery of functional status after stroke within two underserved groups. The specific study aims were to:

1. Examine recovery of functional status (motor and cognitive function), for White, African American and Hispanic persons with stroke discharged from rehabilitation facilities
2. Examine the contributions of positive emotion and social networks on recovery of functional status (motor and cognitive function), for White, African American, and Hispanic persons with stroke discharged from rehabilitation facilities; and
3. Examine the interaction between positive emotion and social networks on recovery of functional status (motor and cognitive function) for White, African American, and Hispanic persons with stroke discharged from rehabilitation facilities.

The data were collected by the IT Health Track at four time points: at admission and discharge from rehabilitation facility, and 80-180 days and 365-425 days after discharge. These data emphasize recovery of motor and cognitive functional status, positive emotion, and social networks

The dataset contains 226 variables and 1219 cases from 11 rehabilitation facilities across the United States.