Investigators at the National Institute of Health (NIH) recognize that health related quality of life (HRQOL) outcomes measures, including physical health, psychological and emotional well being, level of social support, community participation, and level of everyday functioning, predict overall long term satisfaction of an individual. As such, the NIH has funded and continues to support research initiatives aimed at the development of validated clinical tools to assess HRQOL for use in the general population (e.g. Patient-Reported Outcomes Measurement Information System [PROMIS]), as well as in persons with neurological disorders (Neuro-QOL) and individuals with spinal cord injury (SCI-QOL). Due to the unique constellation of physical limitations and secondary medical complications, individuals with SCI represent a challenging model for the development of HRQOL tools. That said, because of multiple co-morbid medical conditions, small changes in physical, psychological or social function may be magnified and translate into significant improvement in HRQOL in persons with SCI. An area of clinical medicine that has been overlooked in the SCI population is blood pressure dysregulation (BPD), which frequently manifests in persistent hypotension, orthostatic hypotension and/or sustained hypertension, as well as episodic uncontrolled hypotension and/or severe hypertension. The impact of BPD on HRQOL in the SCI population is presently unknown, however there is substantial evidence that conditions of blood pressure pathology, specifically chronic hypotension and hypertension, contribute to poor quality of life, low motivation, fatigue, social isolation and depression in the general population. It is likely that the same risk is present in the SCI population although clinical medicine lacks a sensitive and specific measurement tool for the accurate assessment of the impact of BPD on HRQOL in these individuals. Improving our understanding of the impact of BPD on HRQOL in persons with SCI will help target patients at greater relative risk for diminished QOL stemming from these multifaceted conditions. The goal of this project is to develop a unique, clinically relevant and powerful tool to determine the impact of BPD on HRQOL in individuals with SCI. We anticipate that this HRQOL tool will be an integral part of all future SCI clinical trials and clinical practice;a glaring omission to our current evaluation processes. The proposal will utilize contemporary, state of the art techniques which combine technology with the science of measurement to collect reliable, valid and useful data from a large sample of individuals with SCI in a manner which will minimize the burden, yet will maximize the yield. Furthermore the investigative team is unique in their individual expertise and is well poised and exceedingly competent at each of the individual areas of investigation;the union of scientific intellect on the project is unparalleled.
Spinal cord injury (SCI) is a lifelong condition, requiring care from multiple disciplines to diminish impairments, limit secondary complications, improve social functioning and quality of life (QOL). There are approximately 200,000 persons with SCI in the United States and 22% are veterans;the estimated annual cost to the VA for SCI health care is 2.14 billion. In recognition of the enormous expense associated with the long-term care of these individuals the VA supports and continues to fund research initiatives aimed at identifying optimal clinical practices for the care and management of SCI, by determining if clinical practices translate to improved outcomes and QOL (Quality Enhancement Research Initiative). The goal of this study is to develop a meaningful, relevant, and psychometrically sound tool to determine the impact of blood pressure dysregulation on QOL in persons with SCI.