Manon Maitland Schladen

Executive functioning in TBI from rehabilitation to social reintegration: COMPASS goal, a randomized controlled trial (grant: 1I01RX000637-01A3 by the VA ORD RR&D, 2013–2016)

BackgroundTraumatic brain injury is a major health problem that frequently leads to deficits in executive function. Self-regulation processes, such as goal-setting, may become disordered after traumatic brain injury, particularly when the frontal regions of the brain and their connections are involved. Such impairments reduce injured veterans’ ability to return to work or school and to regain satisfactory personal lives. Understanding the neurologically disabling effects of brain injury on executive function is necessary for both the accurate diagnosis of impairment and the individual tailoring of rehabilitation processes to help returning service members recover independent function.Methods/designThe COMPASSgoal (Community Participation through Self-Efficacy Skills Development) program develops and tests a novel patient-centered intervention framework for community re-integration psychosocial research in veterans with mild traumatic brain injury. COMPASSgoal integrates the principles and best practices of goal self-management. Goal setting is a core skill in self-management training by which persons with chronic health conditions learn to improve their status and decrease symptom effects. Over a three-year period, COMPASSgoal will recruit 110 participants with residual executive dysfunction three months or more post-injury. Inclusion criteria combine both clinical diagnosis and standardized scores that are >1 SD from the normative score on the Frontal Systems Rating Scale. Participants are randomized into two groups: goal-management (intervention) and supported discharge (control). The intervention is administered in eight consecutive, weekly sessions. Assessments occur at enrollment, post-intervention/supported discharge, and three months post-treatment follow-up.DiscussionGoal management is part of the “natural language” of rehabilitation. However, collaborative goal-setting between clinicians/case managers and clients can be hindered by the cognitive deficits that follow brain injury. Re-training returning veterans with brain injury in goal management, with appropriate help and support, would essentially treat deficits in executive function. A structured approach to goal self-management may foster greater independence and self-efficacy, help veterans gain insight into goals that are realistic for them at a given time, and help clinicians and veterans to work more effectively as true collaborators.

Maintaining primacy of the patient perspective in the development of patient-centered patient reported outcomes

The objectives of this study were to describe and demonstrate a new model of developing patient reported outcomes (PROs) that are patient-centered, and to test the hypothesis that following this model would result in a qualitatively different PRO than if the typical PRO development model were followed. The typical process of developing PROs begins with an initial list of signs or symptoms originating from clinicians or PRO developers; patient validation of this list ensures that the list (i.e., the new PRO) is interpretable by patients, but not that patient perspectives are central or even represented. The new model begins with elicitation from clinicians and patients independently and separately. These perspectives are formally analyzed qualitatively, and the results are iteratively integrated by researchers, supporting clinical relevance and patient centeredness. We describe the application of this new model to the development of a PRO for urinary signs and symptoms in individuals with neuropathic bladder, and test the hypothesis that the two processes generate qualitatively different instruments using a national validation sample of 300 respondents. Of its 29 items, the new instrument included 13 signs/symptoms derived from existing clinical practice guidelines, with 16 others derived from the patient/focus groups. The three most-endorsed items came from the patients, and the three least-endorsed items came from clinical guidelines. Thematic qualitative analysis of the elicitation process, as well as the results from our national sample, support the conclusion that the new model yields an instrument that is clinically interpretable, but more patient-centered, than the typical model would have done in this context.

State of the Science on Cardiometabolic Risk After Spinal Cord Injury: Recap of the 2013 ASIA Pre-Conference on Cardiometabolic Disease

Cardiovascular disease (CVD) is a leading cause of death in persons with spinal cord injury (SCI) who survive at least 1 year post injury. Persons with SCI who are younger than 45 years of age are four times more likely to die of cardiac causes than their age-matched counterparts without SCI. There is evidence that people with SCI are at increased risk for CVD compared to the general population, however prospective trials documenting true incidence have not confirmed this. These figures are not surprising, due to the effect of paralysis on body composition, challenges to physical activity, and the body’s response to physical activity after SCI. Individuals with SCI may also be less likely, depending on level of injury, to experience angina or other cardiac-related symptoms as a warning sign of cardiac compromise due to sympathetic nervous system disruption. Because measures of risk, and subsequent preventive practices, are based on and designed for the general population and because persons with SCI experience CVD earlier and with fewer cardiac symptoms than the general population, there is a need to better characterize the risks in this population.6 One of the significant risks of CVD in persons with SCI is their tendency to develop cardiometabolic syndrome, defined as a cluster of risk factors that includes obesity, insulin resistance, diabetes mellitus, dyslipidemia, and subclinical atherosclerosis. Cardiometabolic risk (CMR) has been a principal research focus of the Rehabilitation Research and Training Center (RRTC) on Secondary Conditions in the Rehabilitation of Individuals with Spinal Cord Injury. Research conducted during a previous cycle of SCI-RRTC (2003-2009) funding demonstrated that 76.9% of subjects exhibited risk clustering, with elevated low-density lipoprotein cholesterol (LDL-C) occurring in 64% of subjects and depressed high-density lipoprotein cholesterol (HDL-C) occurring in 53% of subjects (42% and 11%, respectively, for males and females). Further, overweight/obesity was the most prevalent CMR (74%) among 121 community-dwelling persons with chronic SCI. Body mass index (BMI) provides a proxy measure of body fat, as the ratio of weight (kg) and height (m2). Although BMI may be adequate for providing a gross estimate of obesity in the general population, it is problematic after SCI due to the significant changes in body composition that are nearly universal and are characterized by a loss of lean and increase in fat mass. As a result, the BMI scale significantly underestimates obesity in individuals after SCI and therefore may not signal actual risk. Similarly, although optimization of the lipid profile is integral to general population CVD prevention, the way in which lipid patterns may differ after SCI and how those differences impact CVD risk in persons with SCI have not received much attention.

Preliminary validation of a Urinary Symptom Questionnaire for individuals with Neuropathic Bladder using Intermittent Catheterization (USQNB-IC): A patient-centered patient reported outcome

Background We developed a Urinary Symptom Questionnaire for individuals with neurogenic bladder due to spinal cord injury (SCI) and spina bifida (SB) who manage their bladders with intermittent catheterization, the USQNB-IC. This project followed an approach to patient-centered patient reported outcomes development that we created and published in 2017, specifically to ensure the primacy of the patient’s perspective and experience. Participants Two sets of responses were collected from individuals with neurogenic bladder due to either SCI (n = 336) and SB (patients, n = 179; and caregivers of patients with NB, n = 66), and three sets of “controls”, individuals with neurogenic bladder who do not have a history of UTIs (n = 49) individuals with chronic mobility impairments (neither SCI nor SB) and without neurogenic bladder (n = 46), and those with no mobility impairment, no neurogenic bladder, and no history of UTIs (n = 64). Method Data were collected from all respondents to estimate these psychometric or measurement domains characterizing a health related PRO: Reliability (minimization of measurement error; internal consistency or interrelatedness of the items; and maximization of variability that is due to “true” difference between levels of the symptoms across patients), and validity (content, reflection of the construct to be measured; face, recognizability of the contents as representing the construct to be measured; structural, the extent to which the instrument captures recognizable dimensions of the construct to be measured; and criterion, association with a gold standard). Results Evidence from these five groups of respondents suggest the instrument has face, content, criterion, convergent, and divergent validity, as well as reliability. The items were all more descriptive of our patient (focus) groups and were only weakly endorsed by the control groups. Conclusions The instrument is unique in its emphasis on, and origination from, the lived experiences of patients with neurogenic bladder who use intermittent catheterization; this preliminary psychometric evidence suggests the instrument could be useful for research and in the clinic. These results justify further development of the instrument, including formal exploration of the scoring and estimation of responsivity of these items to clinical interventions as well as patient-directed self care.

Exploration of the Personal Health Record as a Tool for Spinal Cord Injury Health Self-Management and Coordination of Care

Background: A personal health record (PHR) is a collection of electronic health data drawn from multiple sources but managed by the patient. The PHR is a strategy that enables patients to be proactive in the coordination of their care. Objective: The purpose of this clinical improvement study was to discover what worked, what did not work, and what could be improved in the initial implementation of MyPHR, a PHR tailored to patients with spinal cord injury (SCI), to make it a useful tool for care coordination and health self-management. Methods: Five individuals with chronic (>1 year) SCI carried out trial use of MyPHR. Twelve hours of interactions, including screen navigation and think-aloud reflection, were recorded and analyzed using formative research, a qualitative method and type of case study research. Results: Two key themes emerged to guide the implementation of PHR technology: selectivity in the identification of information for the patient to track, and continual support and communication with the clinical team. Conclusion: Given the volume of electronic data available to patients with SCI, the data identified to import, manage, and keep current in a PHR have to be thoughtfully selected to make sure the patient is convinced of the worth of this data record and is willing to invest the time and effort it will take to maintain it. A PHR should be implemented with a deliberate focus on its function as a tool that patients and providers use together to expand communication as they work toward their common goal of optimizing health after SCI.

Use of Virtual Patients and Online Interactive Case-based Scenarios in the Evaluation and Management of Autonomic Dysreflexia in Persons with Spinal Cord Injury: A Case Study on the Perceptions of Physical Medicine and Rehabilitation Residents and Medical Students

Interventions: None. Main Outcome Measures: Cognition and motor functional gains measured by the FIM instrument, and discharge to acute care hospital and community. Results or Clinical Course: The three stroke groups differed significantly in patient characteristics, medical conditions, facility level measures, and IRF LOS, with an average of 8.8, 13.6, and 20.9 days for mildly, moderately, and severely impaired patients, respectively. After controlling for admission FIM and covariates under study, a longer LOS was significantly associated with increased cognition and motor gains for both moderately and severely impaired patients. Patients who had a longer IRF LOS were less likely to be discharged to an acute care hospital (moderately and severely impaired groups) and more likely to be discharged to community (severely impaired group). However, a longer LOS did not associate with better patient outcomes for the mildly impairment group. Conclusions: A longer IRF LOS was associated with favorable rehabilitation outcomes of the moderately and severely impaired stroke patients but not the mildly impaired stroke patients.

Poster 483 Use of Hybrid Simulation to Teach the Evaluation and Management of Autonomic Dysreflexia in Physical Medicine and Rehabilitation Education: A Feasibility Case Study

Disclosures: C. W. Robinson, No Disclosures. Case Description: A 51-year-old man who underwent subtotal resection of spinal astrocytoma at level T7-T9 in April 2007 which resulted in T10 motor and sensory ASIA D classification. Patient developed a deep venous thrombosis (DVT) in lower left extremity, diagnosed by Doppler ultrasound, 8 months after spinal surgery. Patient had been treated with warfarin since December 2007 secondary to the DVT and increased DVT risk associated with cancer. Anticoagulation was initiated and managed by a hematologist/oncologist with International Normalized Ratio (INR) values obtained weekly, then monthly once INR values were stable. INR values for the 2 years previous to this event ranged from 1.8-2.8. Patient developed acute onset of complete, bilateral, lower extremity paralysis in January 2012. Thirty hours after onset of paralysis, patient presented to an emergency department where thoracic MRI revealed intramedullary hematoma extending from the site of the previous surgery (T8) to T10. Documented INR was 2.2. Patient underwent thoracic laminectomy at level T9-T10 with exposure of previous T8 decompression, intramedullary exploration and evacuation of intramedullary hemorrhage. Setting: Tertiary care hospital. Results or Clinical Course: Patient had complete loss of motor function and sensation from level T10 resulting in conversion of incomplete ASIA D to complete ASIA A classification that has persisted at 6 weeks follow-up. Discussion: This is the first reported case, to our knowledge, of an intramedullary hematoma that developed at a previous spinal tumor resection site in a patient on chronic, therapeutic anticoagulation. Conclusions: The risk of spontaneous spinal hemorrhage in one with previous spinal tumor resection and who requires anticoagulation is unknown. However, given the significant consequences of an intramedullary hemorrhage and the increased risk of spontaneous hemorrhage associated with warfarin anticoagulation, risks versus benefits of anticoagulation should be carefully assessed and discussed with a patient, and frequently re-evaluated.