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Objective This study investigated factors influencing surgical decision-making (DM) to treat neurogenic bladder and bowel (NBB) dysfunction for veterans and civilians with spinal cord injury (SCI) in the United States (US). Design Semi-structured interviews complemented by survey measures. Setting Community-dwelling participants who received treatment at a major Midwestern US medical system, a nearby Veterans Affairs (VA) facility, and other VA sites around the US. Participants Eighteen participants with SCI who underwent surgeries; completed semi-structured interviews and survey measures. Interventions Not applicable. Outcomes measures Semi-structured interviews were coded to reflect factors, DM enactment, and outcomes, including surgery satisfaction and quality of life (QOL). Quantitative measures included COMRADE, Ways of Coping Questionnaire, Bladder and Bowel Treatment Inventory, PROMIS Global Health and Cognitive Abilities scales, and SCI-QOL Bladder and Bowel short form. Results Themes identified about factors influencing DM included: recurrent symptoms and complications; balancing dissatisfaction with NBB management against surgery risks; achieving independence and life style adjustments; participant's driven solutions; support and guidance and trust in doctors; and access and barriers to DM. DM enactment varied across surgeries and individuals, revealing no clear patterns. Most participants were satisfied with the surgery outcomes. Some differences in demographics were observed between veterans and civilians. Conclusions We have attempted to illustrate the process of NBB DM as individuals move from factors to enactment to outcomes. Attending to the complexity of the DM process through careful listening and clear communication will allow clinicians to better assist patients in making surgical decisions about NBB management.

Objectives People with neurogenic bladder and/or bowel dysfunction experience diverse challenges that can be difficult to evaluate with standardized outcome measures. Goal attainment scaling (GAS) is an individualized, patient-centric outcome measure that enables patients/caregivers to identify and track their own treatment goals. Because creating goals de novo can be cumbersome, we aimed to develop a neurogenic bladder/bowel dysfunction goal menu to facilitate goal attainment scaling uptake and use. Methods We conducted a workshop with 6 expert clinicians to develop an initial menu. Individual interviews with 12 people living with neurogenic bladder and/or bowel dysfunction and 2 clinician panels with 5 additional experts aided us in refining the menu. A thematic framework analysis identified emergent themes for analysis and reporting. Results Interview participants were adults (median = 36 years, range 25-58), most with spinal cord injury (75%; 9/12). Of 24 goals identified initially, 2 (8%) were not endorsed and were removed, and 3 goals were added. Most participants listed “Impact on Life” goals (eg, Exercise, Emotional Well-Being) among their 5 most important goals (58%; 35/60). Three main themes emerged: challenges posed by incontinence, limitations on everyday life, and need for personalized care. Conclusions We developed a clinical outcome assessment tool following a multistep process of representative stakeholder engagement. This patient-centric tool consists of 25 goals specific to people living with neurogenic bladder and/or bowel dysfunction. Asking people what matters most to them can identify important constructs that clinicians might have overlooked.

Financial support provided by the Craig H. Neilsen Foundation.© Copyright 2020, Paralyzed Veterans of AmericaThese guidelines have been prepared based on scientific and professional information ava...

People with spinal cord injury (SCI) suffer from the sequela of neurogenic bowel and its disabling complications primarily constipation, fecal incontinence, and gastrointestinal (GI) symptoms. Neurogenic bowel is a functional bowel disorder with a spectrum of defecatory disorders as well as colonic and gastrointestinal motility dysfunction. This manuscript will review the anatomy and physiology of gastrointestinal innervation, as well as the pathophysiology associated with SCI. It will provide essential information on the recent guidelines for neurogenic bowel assessment and medical management. This will allow medical providers to partner with their patients to develop an individualized bowel plan utilizing a combination of various pharmacological, mechanical and surgical interventions that prevent complications and ensure successful management and compliance. For people with SCI and neurogenic bowel dysfunction, the fundamental goal is to maintain health and well-being, promote a good quality of life and support active, fulfilled lives in their homes and communities.

Objective: To provide an overview of clinical assessments and diagnostic tools, self-report measures (SRMs) and data sets used in neurogenic bladder and bowel (NBB) dysfunction and recommendations for their use with persons with spinal cord injury /disease (SCI/D). Methods: Experts in SCI/D conducted literature reviews, compiled a list of NBB related assessments and measures, reviewed their psychometric properties, discussed their use in SCI/D and issued recommendations for the National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDEs) guidelines. Results: Clinical assessments included 15 objective tests and diagnostic tools for neurogenic bladder and 12 for neurogenic bowel. Following a two-phase evaluation, eight SRMs were selected for final review with the Qualiveen and Short-Form (SF) Qualiveen and the Neurogenic Bowel Dysfunction Score (NBDS) being recommended as supplemental, highly-recommended due to their strong psychometrics and extensive use in SCI/D. Two datasets and other SRM measures were recommended as supplemental. Conclusion: There is no one single measure that can be used to assess NBB dysfunction across all clinical research studies. Clinical and diagnostic tools are here recommended based on specific medical needs of the person with SCI/D. Following the CDE for SCI studies guidelines, we recommend both the SF-Qualiveen for bladder and the NBDS for bowel as relatively short measures with strong psychometrics. Other measures are also recommended. A combination of assessment tools (objective and subjective) to be used jointly across the spectrum of care seems critical to best capture changes related to NBB and develop better treatments.

Financial support provided by the Craig H. Neilsen Foundation.© Copyright 2020, Paralyzed Veterans of AmericaThese guidelines have been prepared based on scientific and professional information ava...

BACKGROUND CONTEXT Individuals living with a spinal cord injury (SCI) are at heightened risk for a number of chronic health conditions such as secondary comorbidities that may develop or be influenced by the injury, the presence of impairment, and/or the process of aging. PURPOSE The objective of this study was to compare the incidence of and adjusted hazards for cardiovascular and metabolic (cardiometabolic) morbidities among adults following SCI compared to adults without SCIs. STUDY DESIGN/SETTING Longitudinal cohort from a nationwide insurance claims database. PATIENT SAMPLE Privately-insured beneficiaries were included if they had an ICD-9-CM diagnostic code for traumatic SCI (n=9,081). Adults without SCI were also included (n=1,474,232). OUTCOME MEASURES AND METHODS Incidence estimates of common cardiometabolic morbidities were compared at 4-years of enrollment. Survival models were used to quantify unadjusted and adjusted hazard ratios for incident cardiometabolic morbidities. RESULTS Adults living with traumatic SCIs had a higher 5-year incidence of any cardiometabolic morbidities (56.2% vs. 36.4%) as compared to adults without SCI, and differences were to a clinically meaningful extent. Survival models demonstrated that adults with SCI had a greater hazard for any cardiometabolic morbidity (Hazard Ratio [HR]: 1.67; 95%CI: 1.58, 1.76) and all cardiometabolic disorders; this ranged from HR: 1.45 (1.32, 1.59) for non-alcoholic fatty liver disease to HR: 3.55 (3.36, 3.76) for heart failure. CONCLUSIONS Adults with SCIs have a significantly higher incidence of and risk for common cardiometabolic morbidities, as compared to adults without SCIs. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce risk of cardiometabolic disease onset/progression in this vulnerable population.

Background People living with spinal cord injuries (SCIs) experience motor, sensory and autonomic impairments that cause musculoskeletal disorders following the injury and that progress throughout lifetime. The range and severity of issues are largely dependent on level and completeness of the injury and preserved function. Objective High risk of developing musculoskeletal morbidities among individuals after sustaining a traumatic SCI is well known in the clinical setting, however, there is a severe lack of evidence in literature. The objective of this study was to compare the incidence of and adjusted hazards for musculoskeletal morbidities among adults with and without SCIs. Methods Privately-insured beneficiaries were included if they had an ICD-9-CM diagnostic code for SCI (n = 9081). Adults without SCI were also included (n = 1,474,232). Incidence estimates of common musculoskeletal morbidities (e.g., osteoporosis, sarcopenia, osteoarthritis, fractures, etc.) were compared at 5-years of enrollment. Survival models were used to quantify unadjusted and adjusted hazard ratios for incident musculoskeletal morbidities. Results Adults living with traumatic SCIs had a higher incidence of any musculoskeletal morbidities (82.4% vs. 47.5%) as compared to adults without SCI, and differences were to a clinically meaningful extent. Survival models demonstrated that adults with SCI had a greater fully-adjusted hazard for any musculoskeletal morbidity (Hazard Ratio [HR]: 2.41; 95%CI: 2.30, 2.52), and all musculoskeletal disorders, and ranged from HR: 1.26 (1.14, 1.39) for rheumatoid arthritis to HR: 7.02 (6.58, 7.49) for pathologic fracture. Conclusions Adults with SCIs have a significantly higher incidence of and risk for common musculoskeletal morbidities, as compared to adults without SCIs. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce risk of musculoskeletal disease onset/progression in this higher risk population.

Prospective, cohort study. To evaluate the effectiveness of bi-level positive airway pressure (PAP) therapy and the patterns of use for sleep-disordered breathing (SDB) in individuals with spinal cord injury (SCI). Academic tertiary care center, USA. Overall, 91 adults with C1-T6 SCI for ≥3 months were recruited and 74 remained in the study to be evaluated for SDB and follow-up. Individuals with SDB but no nocturnal hypercapnia (NH) were prescribed auto-titrating PAP. Those with NH were prescribed PAP with volume-assured pressure support. Device downloads and overnight transcutaneous capnography were performed at 3, 6, and 12 months to quantify PAP use and effectiveness. Participants kept daily event logs, and quality of life (QOL) questionnaires were performed after 3, 6, and 12 months. Overall, 45% of 91 participants completed the study. There was great diversity among SCI patients in PAP utilization; after 3 months, 37.8% of participants used PAP for ≥70% nights and ≥240 min per night, whereas 42.2% seldom used PAP and 20% used PAP sporadically or for short periods. PAP therapy was effective in improving OSA in 89% and nocturnal hypercapnia in 77%. Higher PAP pressures predicted higher levels of device use. There were marked reductions in symptoms of autonomic dysreflexia (AD) and orthostatic hypotension as well as some improved indices of QOL. Despite widely diverse patterns of use, PAP therapy may have short-term benefits with regard to QOL and reducing episodes of dizziness and autonomic dysreflexia.

Background: The management of neurogenic bowel and bladder by individuals with spinal cord injury (SCI) often requires a complicated set of behaviors to optimize functioning and reduce complications. However, limited research is available to support the many recommendations that are made. Objective: To describe the occurrence of behaviors associated with the management of neurogenic bowel and bladder among individuals with chronic SCI and to explore whether relationships exist between the performance of those behaviors and outcomes related to health and quality of life. Methods: A survey was developed based on clinical guidelines to collect self-report information about the performance of specific behaviors associated with the management of neurogenic bowel and bladder by individuals with SCI. It was administered to 246 individuals with chronic SCI living in the community as part of a larger ongoing study. Results: Results suggest that the methods that those with SCI use to manage neurogenic bowel and bladder are multifaceted. Many methods are performed with significant consistency, but significant variations exist for some and are often associated with neurological status, methods of evacuation, and quality of life. Conclusion: Many people with SCI of long duration are not sure of the sources of recommendations for some of the management activities that they or their personal care assistants conduct. It is prudent for clinicians working with these people to review their recommendations periodically to ensure that they are current and understood.

Background Ischemic cardiomyopathy ( ICM ) and dilated cardiomyopathy ( DCM ) differ in histopathology and prognosis. Although transendocardial delivery of mesenchymal stem cells is safe and provides cardiovascular benefits in both, a comparison of mesenchymal stem cell efficacy in ICM versus DCM has not been done. Methods and Results We conducted a subanalysis of 3 single‐center, randomized, and blinded clinical trials: (1) TAC‐HFT (Transendocardial Autologous Mesenchymal Stem Cells and Mononuclear Bone Marrow Cells in Ischemic Heart Failure Trial); (2) POSEIDON (A Phase I/II, Randomized Pilot Study of the Comparative Safety and Efficacy of Transendocardial Injection of Autologous Mesenchymal Stem Cells Versus Allogeneic Mesenchymal Stem Cells in Patients With Chronic Ischemic Left Ventricular Dysfunction Secondary to Myocardial Infarction); and (3) POSEIDON‐DCM (Percutaneous Stem Cell Injection Delivery Effects on Neomyogenesis in Dilated Cardiomyopathy). Baseline and 1‐year cardiac structure and function and quality‐of‐life data were compared in a post hoc pooled analysis including ICM (n=46) and DCM (n=33) patients who received autologous or allogeneic mesenchymal stem cells. Ejection fraction improved in DCM by 7% (within‐group, P =0.002) compared to ICM (1.5%; within‐group, P =0.14; between‐group, P =0.003). Similarly, stroke volume increased in DCM by 10.59 mL ( P =0.046) versus ICM (−0.2 mL; P =0.73; between‐group, P =0.02). End‐diastolic volume improved only in ICM (10.6 mL; P =0.04) and end‐systolic volume improved only in DCM (17.8 mL; P =0.049). The sphericity index decreased only in ICM (−0.04; P =0.0002). End‐diastolic mass increased in ICM (23.1 g; P DCM (−4.1 g; P =0.34; between‐group, P =0.007). The 6‐minute walk test improved in DCM (31.1 m; P =0.009) and ICM (36.3 m; P =0.006) with no between‐group difference ( P =0.79). The New York Heart Association class improved in DCM ( P =0.005) and ICM ( P =0.02; between‐group P =0.20). The Minnesota Living with Heart Failure Questionnaire improved in DCM (−19.5; P =0.002) and ICM (−6.4; P =0.03; δ between‐group difference P =0.042) patients. Conclusions Mesenchymal stem cell therapy is beneficial in DCM and ICM patients, despite variable effects on cardiac phenotypic outcomes. Whereas cardiac function improved preferentially in DCM patients, ICM patients experienced reverse remodeling. Mesenchymal stem cell therapy enhanced quality of life and functional capacity in both etiologies. Clinical Trial Registration URL : http://www.clinicaltrials.gov . Unique identifiers: TAC ‐ HFT : NCT 00768066, POSEIDON : NCT 01087996, POSEIDON ‐ DCM : NCT 01392625.

STUDY DESIGN: Presentation of implementation of International Spinal Cord Injury (SCI) Data Sets, International Standards for Neurological Classification of SCI (ISNCSCI), and other structured SCI tools in to the Electronic Medical Record (EMR) Epic. OBJECTIVES: To describe the implementation of SCI tools in Epic at Rigshospitalet, University of Hospital, Capital Region of Denmark, and the ambitions for the future development of SCI related structured data and their reporting in the Epic EMR to be able to standardize data collection to facilitate research within institutions and collaboratively with other institutions locally and globally. SETTING: Denmark and United States of America. METHODS: The general content of the EMR Epic and the SCI-specific structured data implemented are described as well as the tools for reporting. RESULTS: The ISNCSCI is made available via access to http://isncscialgorithm.azurewebsites.net/. After filling in the test data on the website, one can save the completed form as an image within the patient’s chart. The International SCI Core Data Set and 13 International SCI Basic Data Sets (Table 1) are nearly completely implemented in the Danish version of Epic as SmartForms. In addition, 14 functional measures, including the Spinal Cord Independence Measure III, are implemented as flowsheets (Table 2). CONCLUSIONS: The possibility of entering international recognized structured data into the EMR gives better possibility for data sharing across SCI centers worldwide. SPONSORSHIP: Gianna Maria Rodriguez, Stacey Cohen, and Fin Biering-Sørensen are users of Epic, but have no economic relationship with Epic. Kelly Tausk and Josh Martin are employees of Epic.

The International Standards for the Neurological Classification of Spinal Cord Injury (ISNCSCI) is routinely used to determine levels of injury and to classify the severity of the injury. Questions are often posed to the International Standards Committee of the American Spinal Injury Association (ASIA) regarding the classification. The committee felt that disseminating some of the challenging questions posed, as well as the responses, would be of benefit for professionals utilizing the ISNCSCI. Case scenarios that were submitted to the committee are presented with the responses as well as the thought processes considered by the committee members. The importance of this documentation is to clarify some points as well as update the SCI community regarding possible revisions that will be needed in the future based upon some rules that require clarification.

Kalpakjian CZ, Quint EH, Bushnik T, Rodriguez GM, Terrill MS. Menopause characteristics and subjective symptoms in women with and without spinal cord injury. Objective To examine menopause transition characteristics and symptom bother in women with spinal cord injury (SCI). Design Prospective cohort (4 data collection periods across 4 years). Setting Community. Participants Women (n=62) with SCI (injury levels C6–T12, nonambulatory, >36mo postinjury; 86.1% retention) and women without SCI (n=66; 92.9% retention) with intact ovaries, not using hormone therapy, and between the ages of 45 and 60 years volunteered. A total of 505 observations were collected and analyzed. Interventions None. Main Outcome Measures Age at final menstrual period (FMP), transitions through menopause status classifications, and menopause symptom bother (vasomotor, somatic, psychologic symptoms). Results The number of women transitioning through a menopause status classification over the course of the study did not significantly vary by group ( P =.263), nor did age at FMP ( P =.643). Women with SCI experienced greater bother of somatic symptoms (a subscale, P P P =.012). Women without SCI had significantly greater bother of vasomotor symptoms ( P =.020). There were no significant group by menopause status interactions; main effects for menopause status were significant only for vasomotor symptoms and vaginal dryness. Conclusions Results suggested that women with SCI experience greater symptom bother in certain areas, but that patterns of symptom bother across menopause, transition through menopause, and age at FMP are similar to those of their peers. Larger studies are needed to examine menopause outcomes with respect to level of injury and completeness of injury. These findings provide a framework that women with SCI and their health care providers can use to address the menopause transition and highlight the importance of multidisciplinary involvement to maximize health and well being during this transition.