2009 — 2013 |
Haley, Stephen M Tulsky, David Scott |
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. |
Pros (Patient Reported Outcomes) For Children and Young Adults With Disabilities @ Boston University Medical Campus
DESCRIPTION (provided by applicant): The notion that children's quality of life instruments need to be designed and applied in a manner specific to children's developmental and cognitive needs is now widely accepted. It is somewhat unclear at what age a children's designed instrument will suffice, and at what age adult PROs can be used with confidence. Specific research needs to focus directly on the content and format of quality of life assessments during the child-adolescent-young adult transition stages, particularly for children and young adults with disabilities. Thus, the theme for the Boston University (BU), Kessler Medical Rehabilitation Research &Education Center (KMRR) PROMIS Wave 2 research site application is PROs for Children and Young Adults with Disabilities. With this thematic focus, the BU/KMRR PROMIS Research site will evaluate current PROMIS child and adult item banks in a wide spectrum of childhood and young adult disabling conditions, and examine links between current child and adult PROMIS products. The BU/KMRR PROMIS Research site will develop a cohesive program of research that will span both childhood and young adult age groups. Our focus will be on children and young adults with disabilities, and how PRO quality of life assessments can be adapted to meet their needs. In Project #1, we will examine the responsiveness of the current PROMIS item banks for children and young adults with cerebral palsy who receive major musculoskeletal surgeries. The purpose of Project #2 is develop a scoring link between current PROMIS pediatric and adult item banks so that the PROMIS measures can be used longitudinally during this child-adult transition using a similar metric. Major childhood and adult conditions represented in the sampling plan include children and young adults with cerebral palsy, spinal cord injury and traumatic brain injury. In Project #3, we will evaluate how a sample of the PROMIS item banks work with young adults in relationship to items developed from complimentary projects such as NeuroQoL SCI-QOL, SCI-CAT, and TBI-QOL. PUBLIC HEALTH RELEVANCE: Given the high prevalence of children and young adults with disabilities and promising emerging interventions, appropriate updated quality of life assessments addressing the needs of children and young adults are needed in the innovative PROMIS system. Research directed at developing, testing, and disseminating effective and efficient PROMIS products for these groups can lead to improved clinical research.
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0.901 |
2019 — 2021 |
Tulsky, David Scott |
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. |
Measuring Symptom Clusters in People With Sudden-Onset Disabilities
Project Summary/Abstract Sudden-onset injuries?such as acquired injuries or insults to the brain, spinal cord, and major extremities?begin in an instant and typically cannot be reversed. While there is potential for varying degrees of physical, functional, psychosocial, and/or cognitive recovery with rehabilitation, these injuries often result in life-long and life-altering disabilities. Furthermore, many such injuries occur in individuals who are young, active, and otherwise healthy. With the approximately 2.58 million new injuries to the brain, spine, or limb that occur each year, and an estimated 14.45 million individuals living in the U.S. with long-term disabilities related to these conditions, sudden-onset injuries are some of the most common causes of morbidity in the U.S. Given the invaluable opportunity to improve outcomes for such a large number of individuals, there is a vital need to better understand the complex patterns of symptoms experienced by these individuals in the long term to inform high-quality clinical care. Symptom clustering science offers an ideal method to achieve this goal. This project?s broad, long-term objective is to understand the complex patterns of symptoms displayed after acquired injuries to the brain, spine, or limb, so that clinical care can be improved. Symptom clustering has proven useful as a strategy for personalized medicine with complex medical conditions, such as cancer. However, there are several significant gaps in the literature, including the need to expand these methods to other clinical groups, define the characteristics of symptom clusters, identify instruments and metrics for measuring symptom clusters, and apply novel analytic strategies for detecting symptom clusters. This work will leverage over a decade of the investigators? prior qualitative and quantitative work on several large, multi-site studies with these clinical populations. In particular, existing data sets will be reanalyzed using new symptom clustering techniques. Results from these new analyses will be used to identify and characterize the most important symptom clusters for individuals with acquired disabilities. Then, a new, more diverse sample of individuals with acquired injuries to the brain, spine, or limb will be collected and evaluated to examine the generalizability and stability of these symptom clusters for use within and across rehabilitation populations. Last, the findings will be used to generate guidelines and clinical tools to translate symptom clusters into clinical practice. This work will be accomplished through four aims. Aim 1: Identify transdiagnostic and condition-specific symptom clusters present in individuals with traumatic injuries. Aim 2: Explore the generalizability and reproducibility of the symptom clusters identified in Aim 1 in a diverse sample of individuals with acquired disabilities. Aim 3: Examine longitudinally the stability and predictive utility of symptom clusters in a diverse sample of individuals with acquired disabilities. Aim 4: Develop guidelines and clinical tools for assessing and interpreting symptom clusters in individuals with acquired disabilities.
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0.958 |