CHP building at night

Projects & Grants

Research Projects

Current Grants

Krause Team Picture 2016

Health Projects

Aging 45 Year

"Aging and Spinal Cord Injury: A 45-year Longitudinal Study"

Many individuals now live to aging milestones after the onset of spinal cord injury (SCI). Recent longitudinal research suggests a dramatic increase in physician visits and hospitalizations among those reaching 40+ years post-injury, with some declines in life satisfaction and future expectations. We must better understand these changes if we are to better prepare individuals for aging-related challenges.

Our purpose is to conduct a 45-year follow-up, the ninth data collection in the SCI Longitudinal Aging Study. It was initiated in 1973 using a revolving panel longitudinal design with regular follow-ups every 4-5 years and intermittent addition of new participant cohorts. As of 2013, a total of 768 participants had participated on 3-8 occasions, 50 of whom had been in the study since inception and 54 added in 1984.

We will assess outcomes from a projected 538 participants of the 768 who participated in the 40-year follow-up. We will identify the natural course of health, participation, need for medical services, life satisfaction, and self-reported problems using an expanded version of the Life Situation Questionnaire. We specifically added measures related to aging, with more detail and diversity than included in more basic large-scale data sets. Cross-sectional and longitudinal analyses will be performed. We will identify factors related to unfavorable changes over time by contrasting participants with stable outcomes against those whose outcomes have declined.

Two stakeholder panels will meet annually throughout the project. They will assist with dissemination and knowledge translation, interpretation of findings, recommendations for policy, and development of guidelines for healthy aging after SCI.

Knowledge Translation

“A multidisciplinary approach to translating new knowledge into practice to promote health and well-being after spinal cord injury”

We propose to translate new scientific knowledge relating to health and function to reduce risk of secondary health conditions (SHCs) and other health complications after spinal cord injury (SCI) by developing automated individualized risk profiles for use by consumers with SCI and interdisciplinary Health care providers. This will address a key limitation in current KT practices and utilization tools which are typically general in nature, such as fact sheets, videos, or other self-help information. We will use data on over 5,000 participants related to risk and protective factors for SHCs and other health outcomes, from the Rehabilitation Research and Training Center on SHCs after SCI to develop the automated individualized risk profiles and fact sheets for those who do not have Internet access. We will fully engage stakeholders, including those with SCI, health professionals, and those who work with SCI registries in identifying the conditions upon which to focus, the types of formats and appropriateness of the tools for different environments and end-users, and the usefulness of the tools. We will do the following activities: (1) convene stakeholder groups to identify the most important areas of focus, (2) develop the automated tools, (3) reconvene stakeholder groups throughout the project to evaluate the tools, (4) disseminate the tools through stakeholder, institutional, and public health agencies, and (5) evaluate the utility of the tools within those settings. We will collaborate with several stakeholder organizations including the RRTC on Independent Living at the University of Kansas, the South Carolina SCI Association, AccessAbility (local ILC), Roper Hospital, the Minnesota Department of Health, and the South Carolina SCI Surveillance System.

Negative Health Spirals

"Understanding, Predicting, and Preventing Life-Changing and Life-Threatening Health Changes Among Aging Veterans and Civilians with Spinal Cord Injury"

Maintaining health is very difficult for both military veterans and civilians in the years and decades after the onset of spinal cord injury (SCI). People with SCI are particularly vulnerable to secondary health conditions (SHC), such as pressure ulcers, urinary tract infections, and respiratory complications. Even when a single SHC occurs, there is a risk of more serious complications. Although not very well understood, the onset of one SHC may elevate the risk of others. A fracture leads to immobility, which may in turn trigger a sequence of events, such as the development of pressure ulcers that ultimately become infected. Or, the development of a pressure ulcer may lead to respiratory complications by virtue of immobility. Clearly, we need to understand how these negative health spirals occur, if we are to have any hope of preventing them.

Our purpose is to better understand the how and why of the development of negative health spirals and how they may best be prevented. We will use qualitative methods, meaning simply we will identify these health problems from the perspective of those with SCI. What can those who have experienced negative health spirals tell us about how they occur and how they feel they could have been prevented? What worked for them in ultimately stopping the negative health spiral, if indeed they were able to stop it? What were the other consequences? And, in those sad instances where the negative health spiral led to loss of life, what can the family members tell us so we can prevent these consequences from happening to others?

We will identify participants from two existing studies, the first of which was initiated in 1973 and the second of which was initiated in 1997. There have been a total of 2,208 participants in the first study and 3,494 in the second. Participants have completed questionnaires, but there has not been a qualitative study conducted by our team in the past 20 years. There are a significant number of military veterans in our study. A great many participants have also experienced health decline and negative health spirals at different time since the onset of their SCI. Because we have a large existing database, with detailed information on health on more than 1 occasion, we can identify those who have experienced these complications and enroll them in our qualitative study. We will specifically approach those who have reported multiple SHCs, who have indicated general health decline or significant health problems, and have had a number of recent medical treatments.

We will enroll 60 participants with SCI, representing an equal mix of military veterans and civilians. We will also enroll 30 participants who are family members of someone with SCI who either has experienced health decline or passed away from causes related to SHCs. We will conduct interviews with each of the 60 SCI participants and 30 family members to identify the pattern of SHCs over time. We will then conduct focus groups with 6-9 individuals each where those with SCI and their families may interact with each other to engage in a rich discussion of SHCs and negative health spirals. This will allow us to draw out common themes and patterns. We will learn from what has and has not worked for people when trying to prevent SHCs or trying to avoid SHCs from spiraling. We will analyze the data using state-of-the-art data analytic software.

We will publish the results in journals for professionals and also disseminate the results directly to people with SCI and their families. The results of the research will be used to help us better measure multiple SHCs and negative health spirals in our future research. To help us accomplish this, we will bring together an advisory board comprised of members who are military veterans, representatives of the PVA or VAMC, and stakeholders who have SCI. This group will be particularly important in helping interpret the interview and focus group data, so that it can be used for developing intervention strategies. Our ultimate goal is to improve the health and well-being of both military veterans and civilians with SCI by identifying better ways of preventing multiple SHCs, particularly stopping multiple negative health spirals.

Spinal Cord Injury Research Fund (SCIRF)

"Measuring Outcomes after Spinal Cord Injury throughout South Carolina: A System of Tracking, Research, and Referral"

We propose to gain a more comprehensive understanding of the outcomes of people with SCI in South Carolina, their access to health services, and the interrelationships between access to services and clinical outcomes by developing a statewide outcomes database, analyzing and disseminating the results, and building a resource for use by diverse investigators in South Carolina. All newly injured individuals who come into the surveillance system will be routinely assessed for risk and protective factors, access to and utilization of services, and health outcomes. Also, by including a core number of variables in common with the National SCI Statistical Center (NSCISC) Database, we will be able to benchmark outcomes in South Carolina against the NSCISC and use this information to advocate for better services for those with SCI within South Carolina. In addition to the routine collection among new individuals, follow-up assessments will be conducted at regular intervals.

Chronic Disease

"Prevalence of Chronic Disease after Spinal Cord Injury: A Longitudinal Study"

Traumatic spinal cord injury (SCI) is associated with long-term disability and an elevated risk of health problems and excess mortality. Despite the long-term health consequences, we know relatively little about the extent to which SCI leads to an elevated risk of chronic health conditions (CHC; e.g., cardiovascular disease, diabetes). The absence of population-based studies severely limits our ability to estimate the prevalence of these CHCs or their risk factors. Additionally, while having multiple chronic conditions (MCC) may have considerable impact on not only health but also complexity of health care management, there have been no studies of MCC after SCI. Our purpose is to perform a comprehensive and epidemiologic assessment of the prevalence of and risk factors for CHC after SCI, using a population-based cohort from a state SCI Surveillance System Registry (SCISSR). Additionally, the availability of baseline data on a small subset of CHCs enables us to assess these CHCs longitudinally. This study will not only lay the foundation for the development of prevention strategies but will also provide valuable knowledge needed for the allocation of limited resources. Our four aims are to: (1) identify the prevalence of CHCs and the added risk associated with SCI relative to the general population, (2) identify differences in health behaviors compared with the general population, (3) identify risk and protective factors for MCC, and (4) assess the change in prevalence of a subset of CHCs over a five-year interval.

We will enroll 700 participants from the SCISSR in South Carolina (a state-based registry identifying all instances of SCI within the state), a subsample of whom will have longitudinal data from a baseline assessment including seven CHCs (n = 550). Twenty CHCs were chosen based on recommendations by the Department of Health and Human Services for the assessment of MCC. Specific CHCs will be assessed through questions from the Behavioral Risk Factor Surveillance System and the National Health Interview Survey. Data analysis will follow the study aims to derive overall prevalence estimates and relative risk of CHCs, with differences identified as a function of severity of disability as well as race-ethnicity (Aim 1), with similar analyses to identify difference levels of health behaviors (Aim 2). Regression modeling will be used to evaluate the risk and protective factors for MCC (Aim 3), following the structure of the International Classification of Functioning, Disability, and Health model. Lastly, baseline data will be used to identify changes in the prevalence of CHC compared with the general population (Aim 4).

The findings will serve as the foundation for knowledge translation strategies to promote prevention efforts at policy, clinical, and stakeholder levels. We will use our well-established community advisory panel to obtain stakeholder input from those with SCI throughout the study. Dissemination of study results will be geared toward both professionals and stakeholders through multiple avenues, so as to reach as broad an audience as possible. The ultimate goal of the entire project is to generate new knowledge that may be used in diverse settings and diverse circumstances to promote better outcomes, specifically, the prevention of or early intervention for CHC after SCI.

Rehospitalizations

"Number, Primary and Secondary Diagnoses, and Costs of Inpatient Hospitalizations in a Population-based Cohort of People with Spinal Cord Injury"

Spinal cord injury (SCI) leads to an elevated risk of costly hospitalizations, yet we have limited understanding of the factors leading to hospitalization, the costs, or the consequences for participation and quality of life. Most research is limited to the first year, self-report data, and clinical rather than population-based participants. Our purpose is threefold: (1) identify the number of hospitalizations, primary and secondary diagnoses, and costs among a population-based cohort with SCI, (2) identify psychological, socioenvironmental, and behavioral factors associated with each hospitalization parameter, and (3) identify the relationship of hospitalization to participation and quality of life.

We will use administrative cost data to identify hospitalizations, primary and secondary diagnoses, and costs for all years after SCI onset for individuals identified through the South Carolina SCI Surveillance System Registry from 2000-2014 (3,850 individuals). We will link self-report data from a subset of 1,069 participants who participated in a longitudinal study of the first five years after SCI onset with the uniform billing administrative data to identify the predictors of hospitalization. The first set of linked analyses uses the theoretical risk and prevention model. A second set of analyses will apply the ICF model from the World Health Organization to investigate relationships with quality of life.

A consumer advisory panel will meet twice annually throughout the project to help guide the direction of the analyses, interpretation, and recommendations for policy change. They will also assist in dissemination and knowledge translation, including the development of self-help parameters to reduce the likelihood of hospitalization.

Model Systems ED Visits

"Emergency department visits, related hospitalizations, and reasons for utilization of the emergency department after SCI"

It is important to understand how spinal cord injury (SCI) affects Health care utilization, including emergency department visits (EDV) and related hospitalizations (EDH). Limited data suggest markedly elevated rates of ED utilization after SCI compared to the general population. However, little attention has been given to EDV and EDH after SCI, largely because EDV are not a component of the SCIMS Form II data collection. The majority of data available in the US on reasons for ED use has been collected on the general population by the National Health Interview Survey (NHIS) since 2011.

Our purpose is to identify the prevalence and predictors of EDV, EDH, and the reasons for EDV after SCI. We will administer a subset of questions from NHIS regarding EDV, EDH, and reasons for using the ED during the routine Form II data collection. The data will then be linked with other variables already in the Form II data collection. Data collected from the Form I and II will be used to identify the relationship of key variables with ED outcomes to achieve four study objectives: 1) Identify the prevalence of EDV, EDH and reasons for using the ED, and how they vary as a function of SCI level and AIS, sex, race, age, and years post-injury; 2) Compare the prevalence of EDV, EDH, and reasons for using the ED matched with those of individuals in the general population from the same geographic region, controlling for demographic characteristics.; 3) Identify psychological, socioenvironmental, behavioral, and health factors related to EDV and EDH, controlling for demographic and injury factors (highlighted in objective 1); 4) Compare the prevalence of EDV and EDH among the Shepherd participants with those of a population-based cohort from South Carolina. Participants will be those who are completing Form II interviews as part of their SCIMS routine data collection, so the inclusion and exclusion characteristics are identical to the Form II database. We will collect data on 650 consecutive participants.

 

Employment Projects

SCI Employment

"Successful employment and quality work life after severe disability due to SCI"

Research and service delivery models of employment after disability typically focus heavily on transition or return to work, rather than a focus on maintaining employment, advancing in career, and maximizing earning potential. Recent disability research indicates quality of education, work intensity, and income are related to longevity, underscoring the importance of understanding, predicting, and promoting successful employment. Our purpose is to perform a state-of-the-art study of employment after spinal cord injury (SCI), a severe disabling condition, to identify factors related to successful employment that will become a model for guiding research, policy, and service delivery to maximize employment outcomes throughout the life cycle. We will accomplish this by performing a two-stage research study beginning with a qualitative component that will compare and contrast the factors leading to successful and unsuccessful employment from the perspective of stakeholders with SCI, many of whom have had highly successful careers and who have lived the majority of their adult lives after disability onset. We will use the information from the qualitative study, along with input from community advisory panels and vocational rehabilitation service delivery panels to fine-tune the methodology and measurement of a large-scale quantitative study assessing both employment participation and quality of employment. We will perform an integrated program of dissemination, training, and technical assistance to ensure the new knowledge generated will be translated into policy and practice.

Participants for the qualitative component will come from a 35-year longitudinal study of SCI, bringing together participants from two distinctive regions of the country (the Midwest and Southeast). We will conduct qualitative group interviews at each location (Minnesota, Georgia) and will select individuals from diverse backgrounds and with known employment characteristics. This will be used to contrast those with successful careers and those who either did not maintain outcome after disability or who were unable to transition to work after disability onset. The results of this study will be reviewed by a community advisory panel at each location, as well as a panel of vocational rehabilitation service delivery experts to inform the quantitative study that will be used as a foundation for enhanced policy and service delivery.

The quantitative component will assess both participation and quality employment outcomes in addition to key predictors of employment. Data will be collected by survey from participants of the 35-year longitudinal study which includes a substantial portion of individuals 30 or more years post-injury, a large number of whom are at or approaching the end of their careers. Two additional cohorts from state population-based registries will be enrolled, one from Minnesota and one from South Carolina. Population-based cohorts are less biased than participants identified through either clinical or vocational service delivery systems and are, therefore, more representative of the wide array of outcomes observed among the population. We will enroll approximately 2500 adults with SCI who were under the traditional retirement age of 65 at the time of injury onset. We will use a labor participation model adapted from a theoretical risk model of SCI to identify predictors and structure analyses to maximize relevance to policy and service delivery. A wide array of personal and environmental predictors will be assessed to identify factors related to employment participation throughout the life cycle (e.g., hours spent working, years employed, job lapses, age at retirement) as well as quality of employment that reflect either objective (e.g., earnings, promotions, job class) or subjective indicators (intrinsic and extrinsic job satisfaction).

State-of-the-art econometric models will be developed allowing policymakers to isolate the likely effects of policy and service delivery decisions based on their relationship with each study outcome. Distinct sets of analyses will be directed at those in service delivery, as they will include multiple measures relevant to vocational counseling. By developing an integrated program of dissemination, training, and technical assistance for researchers, policy specialists, service delivery professionals, and stakeholders, we will ensure the results of this study reach the intended audiences so the findings may be translated into practice for the promotion of successful employment outcomes throughout the work life cycle.

MS Employment

"Rehabilitation Research and Training Center on Employment of Individuals with Physical Disabilities"

This project is developing and implementing five research studies that directly impact the employment outcomes of individuals with physical disabilities. These studies focus on: (1) technology that improves employment outcomes for individuals with physical disabilities; (2) individual and environmental factors associated with improved employment outcomes; (3) interventions that contribute to improved employment outcomes; (4) effects of government practices, policies, and programs on employment outcomes; and (5) practices and policies that contribute to the improved outcomes for transition-aged youth and young adults with physical disabilities. The activities of this project include: (1) conducting a mixed-method, quasi-experimental study to identify the barriers and facilitators of employment for individuals with physical disabilities and testing the effectiveness of specific knowledge translation strategies used by individuals with physical disabilities to promote the use of employment disability research findings; (2) conducting research on customized employment to identify evidence-based practices that will facilitate the employment of transition-age youth with physical disabilities; (3) conducting research on the employment of veterans with amputation conditions; (4) conducting research to evaluate demand-side employment and a toolkit for use by rehabilitation professionals; 5) studying successful employment and quality of work life after severe disability for individuals with multiple sclerosis and spinal cord injury; and (6) establishing and maintaining a National Resource Center for individuals with physical disabilities and their families that is guided by Rehabilitation Research and Training Center research. This project is a collaboration of Virginia Commonwealth University, the Medical University of South Carolina, and the University of Wisconsin-Madison.

 

Longevity Projects

Aging 45 Year

"Aging and Spinal Cord Injury: A 45-year Longitudinal Study"

Many individuals now live to aging milestones after the onset of spinal cord injury (SCI). Recent longitudinal research suggests a dramatic increase in physician visits and hospitalizations among those reaching 40+ years post-injury, with some declines in life satisfaction and future expectations. We must better understand these changes if we are to better prepare individuals for aging-related challenges.

Our purpose is to conduct a 45-year follow-up, the ninth data collection in the SCI Longitudinal Aging Study. It was initiated in 1973 using a revolving panel longitudinal design with regular follow-ups every 4-5 years and intermittent addition of new participant cohorts. As of 2013, a total of 768 participants had participated on 3-8 occasions, 50 of whom had been in the study since inception and 54 added in 1984.

We will assess outcomes from a projected 538 participants of the 768 who participated in the 40-year follow-up. We will identify the natural course of health, participation, need for medical services, life satisfaction, and self-reported problems using an expanded version of the Life Situation Questionnaire. We specifically added measures related to aging, with more detail and diversity than included in more basic large-scale data sets. Cross-sectional and longitudinal analyses will be performed. We will identify factors related to unfavorable changes over time by contrasting participants with stable outcomes against those whose outcomes have declined.

Two stakeholder panels will meet annually throughout the project. They will assist with dissemination and knowledge translation, interpretation of findings, recommendations for policy, and development of guidelines for healthy aging after SCI.

Mortality

"Risk of Early Mortality after Spinal Cord Injury"

Spinal cord injury (SCI) continues to be associated with early mortality despite advances in medicine and rehabilitation techniques. Although some excess mortality after SCI is related to the severity of the injury, many of the causes of death are preventable. We have begun to identify a set of risk factors that relate to excess mortality above and beyond demographic characteristics such as age and injury factors; yet, there are significant gaps impeding the development of prevention strategies targeted at reducing excess mortality. The purpose of this prospective cohort study is to link risk and protective factors to both all-cause and cause-specific mortality after SCI and to use a combination of expert and community-based stakeholder input to recommend prevention strategies and materials. The ultimate goal is to reduce excess mortality.

A prospective cohort study was initiated in 1997-1998 with a cohort of 1,386 participants with traumatic SCI. The factors assessed were based upon a theoretical risk and prevention model, and included demographic and injury factors, psychological (personality), socio-environmental (social support, socioeconomic status indicators), behavioral (tobacco, alcohol, exercise, participation), and health factors (general health status, secondary conditions). A follow-up was subsequently conducted 10 years later (2007-2010) on 863 original participants and included the addition of a new cohort of 1,686 participants (3,072 total participants). The follow-up assessment included all key predictors from 1997-1998 but also included additional measures of health (pain, spasticity, fatigue) and socio-environmental predictors (ability to pay for services, access to primary physician).

The proposed data collection will include annual determination of mortality status and identification of causes of death using the National Death Index. We predict a total of 626 deaths for the calendar year ending in 2013, 677 deaths by 2014, and 727 by the end of 2015. Data analysis will evaluate each set of predictors in relation to mortality, use time-dependent covariates to update the status of predictors based on follow-up measurement, identify the effects of the new health and socio-environmental predictors of mortality, identify changing predictive variables between the two follow-ups (i.e., positive or negative change) with mortality, and identify risk and protective factors for mortality. The specific methods will include Cox proportional modeling, computation of standardized mortality ratios, and computation of competing risk models.

The unique contributions of the study include (1) a substantially augmented participant cohort (increased from 1,386 to 3,072), (2) addition of a 10-year follow-up assessment, (3) a reduced time interval between prospective data collection and assessment of mortality, (4) the ability to include time-dependent covariates (i.e., update the status of a particular variable in relation to mortality), (5) assessment of change in risk and protective factors with mortality, (6) the addition of several risk and protective factors, and (7) identification of risk and protective factors of cause-specific mortality. The findings from this study will be of direct benefit to the development of prevention strategies for excess mortality, including cause-specific mortality. A community advisory panel will meet three times throughout the study to make recommendations to the study design, analyses, and dissemination. A professional advisory panel will meet to guide dissemination and recommendations based on study findings. Dissemination will include a minimum of four publications in peer-reviewed journals, four presentations at national conferences, and publications in stakeholder journals. Taken together, all project activities will work together to reduce excess mortality after SCI.