Examples of Studies
We have conducted many surveys on health-related topics, ranging from aging to children's health, for recipients of grants from the National Institutes of Health and other grant-making institutions. Examples include the following:
Cancer Survivor Study
This study was designed to describe and quantify the effects of cancer survival on many aspects of survivors' lives, including employment, health insurance, and general economic status. By producing new information about earnings and the quality of life of cancer survivors over the long term, this study will lead to better estimates of the total costs of cancer. We assisted the Pennsylvania State University in securing a grant to conduct the Cancer Survivor Study and conducted the survey for this 5-year effort.
The study population was drawn from four tumor registries—three in Pennsylvania and one at the Johns Hopkins University in Maryland. A comparison group was drawn from two national, longitudinal surveys that are available for public use: the Health and Retirement Survey (HRS) and the Survey of Income and Program Participation (SIPP). We had a major role in questionnaire design, which sought information concerning whether cancer patients maintained or returned to their prediagnosis jobs and insurance after diagnosis or treatment, and whether cancer survival had continuing effects on earnings, job mobility, retirement, and health insurance status. It also identified factors that differentially protected patients from or exposed them to the economic effects of cancer.
Children with Special Health Care Needs Enrolled in Medicaid
The substantial increase in Medicaid enrollment capitated plans that occurred a few years ago raised a number of concerns regarding the delivery of child health care in the United States because the financial incentives to control costs inherent in such plans might elicit undertreatment and restrict access to specific treatments, services, and specialty providers. Despite the widespread growth of managed care in recent years, relatively little research exists documenting the effects of managed care arrangements, in particular, capitated plans, on use of and access to health care services by children and adolescents. Research focusing on children with special health care needs is essentially nonexistent.
Our staff assisted the Institute for Health Care Research and Policy of Georgetown University in obtaining a grant from the Agency for Healthcare Research and Quality (AHRQ) to conduct this survey. We had an important role in the development of the survey instrument to be used and then, using a sample drawn from the Medicaid roles of the District of Columbia, we conducted extensive locating efforts to find valid telephone numbers. We conducted telephone interviews with more than 1,000 caregivers of eligible children and followup interviews a year later with more than 90 percent of them.
The Aging, Stress, and Health Study
The purpose of this study was to learn how the activities and experiences of people affect their health as they age, and in particular, to see whether people of different social and economic backgrounds have different health-related experiences. We conducted the survey for the Sociology Department of the University of Maryland for the second, third, fourth, and fifth rounds of this study under a grant from the National Institute on Aging.
The original sample of approximately 1,000 persons over 65 years of age was selected at random from a list of Medicare beneficiaries in the State of Maryland and Washington, D.C., provided by the Health Care Finance Administration (now the Centers for Medicare and Medicaid Services). We worked with the principal investigators in revising the original questionnaire and then programmed the questionnaire for computer-assisted telephone interviewing, using Blaise, a software package developed by Statistics Netherlands. We achieved response rates greater than 84 percent for each round.
Children's Health after Trauma (CHAT)
Traumatic brain injury (TBI) is a leading cause of death and disability for children. It is estimated that 30-50 percent of all pediatric injury-related deaths involve a TBI and that approximately 17,000 children suffer a permanent disability as a result of a TBI each year. While a number of studies have documented the neurobehavioral consequences of TBI in children, such as memory loss, impulsivity, and poor concentration, few studies have documented the impact of a TBI on a child's functional status, role performance, and emotional well-being. Demonstrating how specific types of impairments affect children's everyday life activities has been difficult because until quite recently, instruments for measuring children's health in a comprehensive and standardized way did not exist.
We conducted the survey for the CHAT study under a grant to the Johns Hopkins University Department of Emergency Medicine from the National Center for Injury Prevention and Control, Centers for Disease Control and Prevention (CDC). CHAT was designed to follow children from shortly after they were injured until a year later. We used the Pediatric Quality of Life Inventory (PedsQL) to ascertain the health status of 430 children who sustained a traumatic injury and the Behavioral Rating Inventory of Executive Function (BRIEF) to determine higher level cognitive functioning. Eligible study participants were between the ages of 5 and 15 and had been admitted to the Johns Hopkins Hospital in Baltimore, Maryland; Children's Hospital of Philadelphia, Pennsylvania; Harborview Medical Center in Seattle, Washington; or Arkansas Children's Hospital in Little Rock, Arkansas; for treatment of a TBI (cases) or an extremity fracture (controls). To measure the health status of the children, the study design called for interviews with their parents or primary caregivers within 2 weeks of hospital admission and again 3 and 12 months after the injury. We consulted on the design of the study questionnaires, programmed the questionnaires for computer-assisted telephone interviewing, and conducted the interviews.
Lower Extremity Assessment Project (LEAP)
The major goal of this study was to examine the long-term consequences of treatment decisions made at the time of injury. Other study goals included determining the ways severe injuries affect people's lives as well as determining the costs associated with these injuries. We conducted the survey for this study for the Johns Hopkins University under a grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases. The study was designed to evaluate the recovery of persons who had suffered a severe leg injury.
We conducted a followup round of interviews with this cohort approximately 6 years after the respondents' previous interviews and enrollment at eight medical centers. We consulted on the design of the questionnaire, programmed the questionnaire for computer-assisted telephone interviewing, traced respondents, and conducted interviews with 72 percent of the approximately 600 sampled study subjects to learn about their health, the problems they suffered with their injured leg or legs, and their current economic situation.
Project At Home
We conducted this survey for the Department of Health Policy and Management of the Johns Hopkins Bloomberg School of Public Health for Project At Home, a national multisite demonstration and evaluation of the Johns Hopkins Home Hospital care model, funded by the John A. Hartford Foundation of New York City. The model provides hospital-level care at home for older persons suffering from four acute illnesses requiring hospitalization: community-acquired pneumonia, exacerbation of congestive heart failure, exacerbation of chronic obstructive airways disease, and cellulitis. This was a cooperative project of Johns Hopkins Bayview Medical Center and Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland; Fallon Healthcare System, Worcester, Massachusetts; Buffalo "At Home"Partnership, Buffalo, New York; and the Department of Veterans Affairs Medical Center, Portland, Oregon.
We consulted on questionnaire design, programmed four questionnaires for computer-assisted interviewing, and attempted interviews at 2 and 4 weeks after diagnosis with a sample of 233 patients and 197 caregivers. The response rates for patients were 79 percent at 2 weeks and 77 percent at 8 weeks; for caregivers, they were 74 percent at 2 weeks and 76 percent at 8 weeks.
Work, Stress, and Health Study
We conducted the data collection for this study for the University of Maryland under a grant from the Centers for Disease Control and Prevention (CDC). The overarching aim of the study was to examine the effects of interpersonal relationships in the workplace on anger and physical health, which were ascertained through two interviews, 20 months apart. The interviews focused on the workers' relationships with superordinates (managers or supervisors), subordinates (people managed or supervised), customers or clients (the recipients of service), and other peers (coworkers).
We used random digit dialing to screen a national sample for eligible households with adults, age 18 or older, at least one of whom was working. We conducted 1,800 interviews during the first wave and followup interviews 20 months later with 72 percent of them. We also conducted a pilot test for this study and advised extensively on questionnaire design.
Outcomes Management System Project: Study of Asthma Patients
We conducted the survey for the Johns Hopkins University School of Hygiene and Public Health for this 3-year longitudinal survey effort conducted by the Managed Health Care Association (MHCA), a group of Fortune 500 companies and their managed care organizations (MCOs) working together to explore the usefulness of outcomes management systems (OMS) in improving the quality and cost-effectiveness of health care.
We collected the patient data for seven of the participating MCOs. The sample for each MCO was drawn in two strata: those who had either a hospitalization or an emergency room visit for asthma in the previous 24 months and those who did not. Starting with an initial sample of 4,723 patients, we achieved response rates of 78 percent in the first year, 80 percent in the second year, and 83 percent in the third year of the study.
National Study of Cataract Outcomes
We conducted the survey for the Program for Medical Technology and Practice Assessment of the Johns Hopkins University on this Agency for Healthcare Research and Quality (AHRQ) Patient Outcomes Research Team (PORT) grant to examine the clinical, functional, and economic outcomes associated with alternative strategies for the management of cataracts.
We assisted in the questionnaire design and then, after screening 775 ophthalmologists in three sites for participation, selected a sample of 75 ophthalmologists, who referred cataract surgery patients to the study for pre- and postoperative interviews. In phase 1, we conducted the preoperative interviews primarily by telephone, using local interviewers in each of the three sites. We interviewed 777 out of 886 preoperative cataract patients referred by the enrolled physicians, for a response rate of 88 percent. In phase 2, as patients reached the 4-month postoperative stage, we recontacted them for a second interview and completed interviews with 98 percent of the phase 1 respondents. In phase 3, as patients reached the 12-month postoperative stage, we contacted them for a third interview and completed interviews with 97 percent of the eligible phase 2 respondents.
Stroke Prevention in Young Women
For the University of Maryland School of Medicine (UMSM), we conducted random digit dialing (RDD) screening to develop a matched control sample of approximately 400 women between the ages of 14 and 44 for a study of ischemic stroke in young women. As cases were referred to UMSM by participating hospitals in the area, UMSM staff communicated appropriate information to us. We then used RDD procedures to locate two controls for each case who met the appropriate criteria for age, race, and county of residence.
Inventory of Mental Health Organizations and National Survey of Mental Health Treatment Facilities
Since 1983, we have provided support to the Center for Mental Health Services (CMHS) for survey data collection, tracking systems, data processing, and statistical analysis. We have conducted several surveys and inventories, including the Inventory of Mental Health Organizations; the Client/Patient Sample Survey; the Longitudinal Client Sample Survey; and the 2000, 2002, and 2004 Surveys of Mental Health Organizations.
We designed and implemented an Internet-based data collection system for the surveys, which offered an alternative to completing the paper questionnaires mailed to administrators of mental health organizations. Logical errors found in the data are resolved using an automated error-checking program and presented directly to the respondent. After data collection, we use imputation techniques to produce values for the remaining missing data, then weights and error estimates are created. A variety of descriptive and analytical tables can then be produced.
We are conducting the 2008 National Survey of Mental Health Treatment Facilities, which replaces the Inventory of Mental Health Organizations and focuses on point-of-service locations. We worked with the client through several iterations of the data collection instrument, designed a verification form for a screening effort to determine correct contact information for the treatment facilities, and conducted pilot studies of the questionnaire and the verification form. Data collection will be accomplished by mailing hard-copy questionnaires, Internet posting of the survey, and telephone interviewing using the computer-assisted telephone interviewing software package Blaise. Hard-copy forms are created for scanning.
Survey of Ambulance Services
In recent years, Medicare modified its methodology for reimbursing ambulance service providers so that payments differ across the nine Census regions and between metropolitan and nonmetropolitan areas. The U.S. Government Accountability Office (GAO), under a mandate from Congress, undertook a study of the costs of providing ambulance services among different types of providers and measured the impact of the new payment methodology on the quality of and access to ambulance service in areas receiving reduced payments.
We conducted a pilot test for the ambulance study. GAO provided us with two sampling frames of ambulance service providers that had billed Medicare during 2003, one a list of hospital-based providers and the other a list of nonhospital-based providers. We advised on a sampling strategy for the pilot test and advised on the questionnaire design, traced telephone numbers, trained interviewers, and produced all survey materials. We received all completed questionnaires, keyed and cleaned the data, and provided a SAS data set to GAO. Project staff also provided a methodology report that advised on a sampling strategy for the main study and made suggestions for reducing both survey and item nonresponse.
GAO staff made many changes in the survey instrument based on the results of the pilot study, and we advised on some aspects of this revision. A new sample of 1,075 hospital and nonhospital providers was drawn from the same source as the pilot sample. Our interviewers conducted the screening interviews and made prompting calls after survey packets were sent to those who were successfully screened. Near the end of the study, our staff called a sample of 30 providers selected by GAO from those returning a questionnaire to ask them to provide copies of the financial records they had used in completing the instrument for a validation of study results.
Promoting Amputee Life Skills (PALS) Study
Every year, approximately 185,000 people undergo amputation surgery in the United States. People with limb loss frequently report problems with pain related to their limb loss; depression and anxiety; difficulties with keeping active physically, mentally, socially, and spiritually; and problems communicating with their health care team. The PALS study is an evaluation of the benefit of different types of support groups that help teach certain skills to those with limb loss. This study was sponsored by the Centers for Disease Control and Prevention (CDC).
Fifty amputee support groups nationwide were enlisted in the study and were randomly assigned to conduct either an 8-week self-management PALS course or their usual support group meetings. Group members were then asked to participate in the study. Those who had been living with the loss of a limb for 6 months or longer and who were at least 18 years old were eligible for the study. Participants completed baseline interviews and three followup 30-minute telephone interviews at 10 weeks, 6 months, and 9 months after the first interview.
We worked with the Johns Hopkins University Center for Injury Research and Policy to conduct this study. We advised on the questionnaire design, pretested and programmed the questionnaires, trained interviewers, and conducted the four rounds of computer-assisted telephone interviews. We were also responsible for sending thank-you letters and honoraria to study participants for each wave of the study and for producing a methodology report.
U.S. Marine Corps (USMC) Family Member Employment Assistance Program Survey (FMEAP)
We provided data collection for this study of the employment experiences of Marine spouses for the U.S. Marine Corps. The goal of the study was to improve the job search assistance that the USMC provides for service spouses through its FMEAP.
Our staff constructed the survey sample from a frame of 60,000 spouses of active duty Marines of all ranks; about 10 percent of the sample was located outside the United States. We worked with project staff at the FMEAP to develop the survey questionnaire, which was designed to learn about the spouses' job histories, moving experiences, and familiarity with the program. Our interviewers conducted telephone interviews with 1,577 Marine spouses over a period of approximately 2 months, using computer-assisted telephone interviewing software. Our staff cleaned the data, created crosstabulations, provided data set documentation, and wrote an analysis report.
Project Hope: National Survey of Physicians Affiliated with Critical Access Hospitals
Critical Access Hospitals (CAHs) are designated rural hospitals that meet certain size and location criteria as specified in Federal legislation governing the Rural Hospital Flexibility (Flex) Program. Under the Flex Program, hospitals that convert to CAH status receive cost-based payments for treating Medicare inpatients and outpatients. States are also encouraged to seek Flex Program funds for use in developing rural health networks and strengthening rural emergency medical services. We collected the data for the Project Hope Walsh Center for Rural Health Analysis, which conducted this survey of physicians affiliated with Critical Access Hospitals to learn their opinion of the CAH concept. The survey was funded by the Federal Office of Rural Health Policy (ORHP) as part of the Flex Program Tracking Project, an effort to collect and disseminate information to the States on how the Flex Program is working.
We consulted on the design of the hard-copy questionnaire and other survey materials, mailed questionnaire packets and incentive checks to physicians, mailed prompting post cards and second questionnaire packets to those that did not respond, performed telephone prompting, and conducted a small number of telephone interviews.
Long-Term Care Workforce Study
This survey was conducted for the Polisher Research Institute (PRI), Philadelphia Geriatric Center (Pennsylvania Intra-Government Council on Long-Term Care). The survey of administrators of long-term care facilities in Pennsylvania examined the problems they faced in hiring and retaining paraprofessional staff.
We consulted with PRI on the design of the advance letter and the survey questionnaire. We also developed a study management information system for the survey, prepared training materials, trained interviewers, and conducted telephone interviews with administrators of adult day care centers, centers for independent living, private and government nursing homes, certified and licensed home health agencies, and large and small personal care homes.
Project Hope: National Physician Survey
Because many national health care policies have different effects on physicians located in rural areas versus those in more densely populated towns and cities, the Project HOPE Walsh Center for Rural Health Analysis conducted this survey of physicians with some practice experience in rural areas to learn about their problems and experiences.
We served as the data collection contractor on this study. Our staff consulted on questionnaire design, produced all survey materials, mailed questionnaire packets, conducted telephone prompting, and edited and double-keyed returned questionnaires.
Effectiveness of the U.S. Marine Corps' Transition Assistance Management Program (TAMP)
This study was conducted to determine the extent to which former Marines have used the TAMP program and whether they have obtained their employment or education objectives after leaving the Marine Corps. We designed and selected the sample, conducted the interviewing using computer-assisted telephone interviewing technology, and analyzed the data. A comparison of weighted estimates for TAMP users and nonusers was made to determine whether there were statistically significant differences between them.
Health and Health Care After Hurricane Katrina
Peoples Health/Johns Hopkins Bloomberg School of Public Health (JHU) sponsored this study of members of its Choices 65 health plan, a plan option for those eligible for Medicare, to understand how elderly Louisiana residents fared in the year following Hurricane Katrina. We conducted the data collection for this study to learn about plan members' health and health care needs and challenges in the wake of the storm.
We consulted with JHU project staff on the development of the study instrument, programmed and tested the questionnaire for computer-assisted telephone interviewing, prepared training materials and other survey materials, and conducted telephone interviews. Project training included a unit on considerations to take into account when interviewing an elderly population. We also traced sampled persons whose contact information was out of date or who had been displaced by the storm.
Military Extremity Trauma and Amputation/Limb Salvage (METALS) Study
The goal of this project is to study the experiences of current and former service members who suffered limb trauma in combat in Iraq and Afghanistan, those who had amputations, and those who underwent limb salvage surgery. Limb salvage spares the arms and legs of those who might otherwise have had amputations, but often involves multiple surgeries and requires special procedures, including bone and skin grafts, bone resection, and reconstructive and plastic surgeries.We are conducting the survey for this study, which is being undertaken by The Center for Injury Research and Policy at the Johns Hopkins Bloomberg School of Public Health for the Department of Defense. We extensively reviewed and revised the survey instrument, programmed it for computer-assisted telephone interviewing, and tested the program. We also developed a survey management information system to handle the enrollment of sample members from different sites and tracing activities on the sample, conducted tracing activities and updated sample contact information, developed interviewer training materials and procedures, conducted interviews, and sent thank-you letters and honoraria to study participants. Other duties include producing weekly status reports, making preliminary and final deliveries of SAS survey data sets, and submitting a project methodology report.