Carole Niederberger, Elena Henes, Andrei V Krassioukov, Michael Baumberger, Jörg Krebs, Jürgen Pannek, Matthias Walter, Anke Scheel-Sailer
{"title":"German Transcreation of the International Standards to Document Remaining Autonomic Function After Spinal Cord Injury (Second Edition): A Feasibility Study in Individuals With Subacute Phase Spinal Cord Injury/Disease (SCI/D).","authors":"Carole Niederberger, Elena Henes, Andrei V Krassioukov, Michael Baumberger, Jörg Krebs, Jürgen Pannek, Matthias Walter, Anke Scheel-Sailer","doi":"10.46292/sci25-00010","DOIUrl":"https://doi.org/10.46292/sci25-00010","url":null,"abstract":"<p><strong>Background: </strong>In May 2021, the second edition of International Standards to document remaining Autonomic Function after Spinal Cord Injury (ISAFSCI) was published.</p><p><strong>Objectives: </strong>To transcreate the 2021 ISAFSCI (2nd ed.) to German and to assess its feasibility in the subacute phase following spinal cord injury/disease (SCI/D).</p><p><strong>Methods: </strong>Transcreation to German was performed by an interdisciplinary team of native English and German speakers. We screened individuals with SCI/D for eligibility (i.e., age ≥18 years; >3 months following SCI/D) between August 2021 and January 2022. To minimize the time for the assessment, we first interviewed participants in a supine position before conducting the clinical examination. We assessed participants thrice within 14 days using a randomized sequence of assessors, and we assessed SCI/D according to the International Standards for Classification of Spinal Cord Injury (ISNCSCI) grading of the SCI/D, including the American Spinal Injury Association Impairment Scale (AIS). Time of ISAFSCI assessments (median and quartiles) and its completeness (%) were calculated.</p><p><strong>Results: </strong>Twelve participants (3 females; median age 42 years [Q1: 31, Q3: 54]) were enrolled and assessed thrice. Severity and level of injury were either sensorimotor complete (AIS A, 9) or incomplete (AIS C, 3) SCI/D and tetraplegia (<i>n</i> = 5) or paraplegia <i>(n</i> = 7), respectively. Median time to complete an assessment was 39 minutes (Q1: 32, Q3: 46).</p><p><strong>Conclusion: </strong>The German version of the ISAFSCI second edition is feasible to perform in a subacute cohort. However, given the subacute stage following SCI, certain limitations must be acknowledged. Many participants have not yet engaged in sexual activity, which limits the evaluation of sexual function.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 3","pages":"89-100"},"PeriodicalIF":1.2,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12376144/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144973796","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Rochelle E Tractenberg, Ana Valeria Aguirre Guemez, Marla Petriello, Suzanne L Groah
{"title":"SCI Model Systems Complicated Urinary Tract Infection (cUTI) Guidelines: International Consensus on cUTI Likelihood Based on Symptoms.","authors":"Rochelle E Tractenberg, Ana Valeria Aguirre Guemez, Marla Petriello, Suzanne L Groah","doi":"10.46292/sci25-00019","DOIUrl":"https://doi.org/10.46292/sci25-00019","url":null,"abstract":"<p><strong>Background: </strong>Complicated urinary tract infection (cUTI) is prevalent among people with spinal cord injury and disease (SCI/D). Diagnostic guidelines are neither consistent nor evidence based.</p><p><strong>Objectives: </strong>To establish consensus around symptoms-based diagnostic and decision-making criteria for cUTI for SCI/D.</p><p><strong>Methods: </strong>A representative sample of clinicians from PM&R, infectious disease, urology, and primary care within the United States (phase 1) and internationally (phase 2) participated in this study. Phase 1 involved focus groups and interviews to refine a decision-making paradigm for cUTI based on reliable and validated Urinary Symptom Questionnaires for Neurogenic Bladder (USQNBs: intermittent catheterization, indwelling catheterization, and voider versions). The phase 2 international Delphi survey on cUTI diagnostic criteria reflected phase 1 results. These criteria feature 6 \"profiles\": combinations of symptom number and types with associated likelihood of cUTI for each USQNB (18 total decisions).</p><p><strong>Results: </strong>Analyses of the phase 1 transcripts (<i>n</i> = 32) led to the Delphi design. Across the United States and internationally, 24 responses were obtained on the complete Delphi, with 48 responses on the USQNB for intermittent catheterization only. We achieved the a priori target 80% consensus on 13 of 18 decisions. The remaining 5 decisions reached 62.2% to 77.8% agreement. Changes were made based on respondent suggestions to clarify decisions and slightly modify risk descriptors. One hundred percent consensus among subject matter experts from 9 collaborating SCI model systems centers was achieved for the revisions.</p><p><strong>Conclusion: </strong>This is the first international and empirical initiative to establish cUTI symptoms-based guidelines for cUTI in SCI/D. These guidelines provide a coherent and evidence-based approach to decision making based on symptoms for clinicians and patients.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 3","pages":"101-120"},"PeriodicalIF":1.2,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12376156/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144973784","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Brittany Snider, Steven Kirshblum, Ruediger Rupp, Christian Schuld, Fin Biering-Sorensen, Stephen Burns, James Guest, Linda Jones, Andrei Krassioukov, Gianna Rodriguez, Mary Schmidt Read, Keith Tansey, Kristen Walden
{"title":"International Standards for Neurological Classification of Spinal Cord Injury: Classification Questions and Cases.","authors":"Brittany Snider, Steven Kirshblum, Ruediger Rupp, Christian Schuld, Fin Biering-Sorensen, Stephen Burns, James Guest, Linda Jones, Andrei Krassioukov, Gianna Rodriguez, Mary Schmidt Read, Keith Tansey, Kristen Walden","doi":"10.46292/sci25-00013","DOIUrl":"https://doi.org/10.46292/sci25-00013","url":null,"abstract":"<p><strong>Background: </strong>The International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) have been refined through the years and continue to evolve with advances in the field. The International Standards Committee of the American Spinal Injury Association (ASIA) is responsible for maintaining, continually reviewing, and updating the ISNCSCI. Questions from spinal cord injury (SCI) professionals are frequently submitted to ASIA for review by the International Standards Committee.</p><p><strong>Methods: </strong>Of the questions submitted to the International Standards Committee, 5 were selected for this article, as they relate to common areas of confusion, address challenging classification concepts, and have not previously been described. Representative cases were also created to reinforce classification rules and the committee's recommendations.</p><p><strong>Cases: </strong>The 5 questions/cases address ISNCSCI classification in the setting of (1) AIS E grade, (2) tendon transfer, (3) spinal cord stimulation, (4) nontraumatic SCI (ntSCI) etiology, and (5) AIS D grade (vs. AIS B) based on the presence of non-key muscle function. Each case includes a detailed review of the correct classification components and thorough discussion of the impact the corresponding question has on the classification.</p><p><strong>Conclusion: </strong>The International Standards Committee provides answers to questions about ISNCSCI classification. The scenarios presented in this article address important classification rules and challenging concepts that have not previously been described. This article can serve as a useful reference when similar cases are encountered in clinical and research settings.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 3","pages":"77-88"},"PeriodicalIF":1.2,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12376160/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144973792","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Matthew Farrow, Jia Li, Sana Chahande, Raquel Minarsch, Tonya Orchard, Jan Schwab, Ceren Yarar-Fisher
{"title":"The Effect of a Low-Glycemic Index Diet on Postprandial Hypotension in Individuals With Chronic Spinal Cord Injury: Results From a Pilot Study.","authors":"Matthew Farrow, Jia Li, Sana Chahande, Raquel Minarsch, Tonya Orchard, Jan Schwab, Ceren Yarar-Fisher","doi":"10.46292/sci24-00044","DOIUrl":"10.46292/sci24-00044","url":null,"abstract":"<p><strong>Background: </strong>One in two individuals with spinal cord injury (SCI) experiences postprandial hypotension (PPH), a decline (>20 mm Hg) in systolic blood pressure (SBP) within 2 hours after eating. Consuming meals with a low glycemic index (GI) could prevent or lessen PPH.</p><p><strong>Objectives: </strong>To determine the effect of a low-GI diet on PPH and postprandial glucose and insulin in individuals with chronic SCI (>1 year postinjury).</p><p><strong>Methods: </strong>Eleven participants (6 males, 5 females; age 43 ± 11 years) with chronic SCI (C4-C7, 7; T4-T12, 4) took part in a randomized crossover study (low GI vs. high GI). On each occasion, BP, glucose, and insulin were measured in the fasted state and for 2 hours after consuming a breakfast meal (60% carbohydrate, 28% fat, 12% protein) in laboratory-controlled conditions. Participants wore an ambulatory BP monitor and continuous glucose monitor for 3 days at home, and consumed study meals that were macronutrient-matched across conditions.</p><p><strong>Results: </strong>The maximum decrease in systolic blood pressure (SBP) following the laboratory-controlled breakfast meals tended to be lower in the low-GI (14 ± 12 mm Hg) compared to the high-GI (24 ± 25 mm Hg) diet (<i>d</i> = 0.52, <i>P</i> = .056). Serum glucose (<i>P</i> < .01) and insulin (<i>P</i> = .026) concentrations were lower at 30 minutes in the low-GI diet. In the home setting, peak glucose concentrations were lower after lunch (<i>P</i> = .011) and dinner (<i>P</i> < .01) in the low-GI diet.</p><p><strong>Conclusion: </strong>A low-GI meal may be an effective solution to reduce the magnitude of PPH and peak glucose concentrations in individuals with chronic SCI.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 1","pages":"30-41"},"PeriodicalIF":2.4,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11848139/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143504722","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Andrew J Park, Hannah K Fandl, Vinicius P Garcia, Auburn R Berry, Kendra N Wegerson, Emily I Ostrander, Hannah L Cardenas, Noah M DeSouza, Jared J Greiner, Brian Stauffer, Christopher A DeSouza
{"title":"Different Circulating Endothelial Microvesicle Subtype Signature in Subacute and Chronic Spinal Cord Injury.","authors":"Andrew J Park, Hannah K Fandl, Vinicius P Garcia, Auburn R Berry, Kendra N Wegerson, Emily I Ostrander, Hannah L Cardenas, Noah M DeSouza, Jared J Greiner, Brian Stauffer, Christopher A DeSouza","doi":"10.46292/sci24-00068","DOIUrl":"10.46292/sci24-00068","url":null,"abstract":"<p><strong>Objectives: </strong>The aim of this study was to determine whether circulating concentrations of activation- and apoptosis-derived endothelial cell-derived microvesicles (EMVs) differ between adults after subacute (time since injury ≤6 months) and chronic (time since injury >12 months) spinal cord injury (SCI).</p><p><strong>Methods: </strong>Peripheral blood was collected from 43 adults (age range 18-71 years): 12 non-injured adults (9 male/3 female), 16 adults with subacute cervical and high thoracic (C2-T3) motor complete injuries (13 male/3 female; time since injury 1-3 months), and 15 adults with chronic cervical and high thoracic (C1-T2) motor complete injuries (14 male/1 female; time since injury 12-52 months). EMVs were defined by markers of endothelial origin either by activation (CD62e<sup>+</sup>) or apoptosis (CD31<sup>+</sup>/CD42b<sup>-</sup>) by flow cytometry. Activation-derived but not apoptosis-derived EMVs were significantly higher (<i>P</i> < .05) in adults with chronic SCI (median [IQR], 139 [83-181] EMVs/μL) compared with adults with subacute SCI (median [IQR], 99 [83-104] EMVs/μL) and non-injured adults (median [IQR], 74 [51-104] EMVs/μL). In contrast, apoptosis-derived but not activation-derived EMVs were significantly higher (<i>P</i> < .05) in adults with subacute SCI (mean ± <i>SD</i>, 77 ± 17 EMVs/μL) compared with adults with chronic SCI (mean ± <i>SD</i>, 55 ± 19 EMVs/μL) and non-injured adults (mean ± <i>SD</i>, 52 ± 25 EMVs/μL). Differential expression of circulating EMVs in adults with SCI during the subacute and chronic phase of injury may represent a biomarker of the vascular environment associated with each condition. Our findings suggest that the vascular phenotype is markedly different in subacute compared with the chronic SCI and provide insight into endothelial function after SCI.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 2","pages":"29-38"},"PeriodicalIF":2.4,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12199602/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144530243","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
J R Connor, W A Thornton, K A Weber, D Pfyffer, P Freund, C Tefertiller, A C Smith
{"title":"Reliability of SCIseg Automated Measurement of Midsagittal Tissue Bridges in Spinal Cord Injuries Using an External Dataset.","authors":"J R Connor, W A Thornton, K A Weber, D Pfyffer, P Freund, C Tefertiller, A C Smith","doi":"10.46292/sci25-00015","DOIUrl":"10.46292/sci25-00015","url":null,"abstract":"<p><strong>Objectives: </strong>To determine the interrater reliability between an automated and manual measure of lesion damage following spinal cord injury (SCI) using T2-weighted magnetic resonance images (MRI).</p><p><strong>Methods: </strong>Twenty-one MRIs were collected from patients who had completed rehabilitation at Craig Hospital. Manual measurements of midsagittal tissue bridges were conducted by an experienced rater using OsiriX (Pixmeo Sarl, Geneva, Switzerland), and automated measures were taken using the SCIsegV2 automated function through the Spinal Cord Toolbox (SCT). Manual and automated measurements were compared using intraclass correlation coefficients (ICC). Percentage agreement and Cohen's kappa statistic were calculated to compare detection of midsagittal tissue bridges.</p><p><strong>Results: </strong>ICCs between the manual and automated measures were excellent (ICC 0.94, 95% CI 0.84-0.97, <i>P</i> < .001, for ventral tissue bridges; ICC 0.99, 95% CI 0.97-0.99, <i>P</i> < .001, for dorsal tissue bridges). Percentage agreement between raters was 90.8% for ventral, dorsal, and any midsagittal tissue bridge. Cohen's kappa for the detection of tissue bridges showed substantial agreement between the two raters for ventral, dorsal, and any tissue bridges (0.81, <i>P</i> < .001; 0.79, <i>P</i> < .001; and 0.81, <i>P</i> < .001, respectively).</p><p><strong>Conclusion: </strong>Measurements of midsagittal tissue bridges between manual and automated raters are reliable. Automated measurements may help to expedite research related to midsagittal tissue bridges and functional outcomes for individuals with SCI.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 2","pages":"39-49"},"PeriodicalIF":2.4,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12199566/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144530249","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anders J Asp, Megan L Gill, Daniel D Veith, Omid Jahanian, K A Fernandez, Candee J Mills, Andrew R Thoreson, Jonathan M Hagedorn, Markus A Bendel, Ryan J Solinsky, W Oliver Tobin, Kristin D Zhao, Peter J Grahn
{"title":"Percutaneous Spinal Cord Stimulator Enables Novel Clonus Biomarker and Management in Persons With Spinal Cord Injury and Multiple Sclerosis: An Exploratory Study.","authors":"Anders J Asp, Megan L Gill, Daniel D Veith, Omid Jahanian, K A Fernandez, Candee J Mills, Andrew R Thoreson, Jonathan M Hagedorn, Markus A Bendel, Ryan J Solinsky, W Oliver Tobin, Kristin D Zhao, Peter J Grahn","doi":"10.46292/sci24-00070","DOIUrl":"10.46292/sci24-00070","url":null,"abstract":"<p><strong>Background: </strong>Spasticity is common in spinal cord injury (SCI) and multiple sclerosis (MS), and it can manifest as repeated, rhythmic muscle contractions called clonus. The spontaneous nature of clonus can disrupt independent performance of activities of daily living and negatively impact overall health and quality of life.</p><p><strong>Objectives: </strong>To quantify biomarkers of clonus and explore management of clonus in individuals with SCI or progressive MS using epidural spinal cord stimulation (ES) or dorsal root stimulation (DRS).</p><p><strong>Methods: </strong>Four male participants were included in this case series study: 3 with SCI and 1 with MS. All participants underwent temporary percutaneous ES lead placement over the dorsolateral thoracolumbar region of the spinal cord. Participants with SCI were also implanted with DRS leads at the L4 dorsal root. Clonus was elicited mechanically at the ankle while recording electromyography of the soleus muscle synchronized to direct spinal cord field potential recordings from ES and DRS percutaneous leads.</p><p><strong>Results: </strong>Clonus was evident as a prominent band (5-8 Hz) in recordings from ES leads, DRS leads, soleus muscle, and accelerometry. In 4 participants, percutaneous spinal stimulation reduced median clonus duration and cycle count. Clonus was immediately suppressed upon activation of spinal cord stimulation, and the suppression persisted even when clonus was reinitiated after turning off the stimulation.</p><p><strong>Conclusion: </strong>The use of objective biomarkers, including spinal cord potentials, to quantify clonus in real time combined with the immediate and reversible effects of stimulation highlight the potential of neuromodulation as a therapeutic tool for managing clonus. These data demonstrate preliminary efficacy of ES and DRS for clonus monitoring and treatment in 4 participants.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 2","pages":"114-124"},"PeriodicalIF":1.2,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12464483/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145186981","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Andrei Krassioukov, Amanda H X Lee, Stacy Elliott, Teri Thorson, Nathan Agon-Chen, Gavin Naicker, Matthew Querée, Janice Eng
{"title":"Breastfeeding After Spinal Cord Injury: A Systematic Review of Prevalence and Associated Complications.","authors":"Andrei Krassioukov, Amanda H X Lee, Stacy Elliott, Teri Thorson, Nathan Agon-Chen, Gavin Naicker, Matthew Querée, Janice Eng","doi":"10.46292/sci24-00035","DOIUrl":"10.46292/sci24-00035","url":null,"abstract":"<p><strong>Background: </strong>Breastfeeding can be a vital component for maternal and infant health, but successful breastfeeding may be especially difficult for mothers with spinal cord injury (SCI). No reliable research on prevalence or complications associated with breastfeeding for mothers with SCI currently exists.</p><p><strong>Methods: </strong>Our systematic review aimed to answer the following: (1) What are the breastfeeding rates in women after SCI? (2) What are the rates and nature of postpartum complications reported by women with SCI in conjunction with breastfeeding?</p><p><strong>Results: </strong>Ten studies were included; the reported rates at which women with SCI were able to breastfeed varied widely, ranging from 11% to 100%. Generally speaking, women with higher-level SCI (above T6) were less likely to breastfeed and would breastfeed less frequently than women with lower-level SCI and less frequently than women without SCI. Complications reported included problems with the let-down reflex, autonomic dysreflexia, and a higher incidence of postpartum depression in women with SCI.</p><p><strong>Conclusion: </strong>More research on mothers with SCI is needed, especially matched-control research comparing mothers with and without SCI on successful breastfeeding and associated complications.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 1","pages":"52-65"},"PeriodicalIF":2.4,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11848132/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143504503","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lizabeth L Jordan, Rosalia Costello, Beatriz MacDonald, Amy Heffelfinger, Erin F Jones, T Andrew Zabel, Jennifer T Queally
{"title":"Evaluating Access to Neuropsychological Services for Individuals with Spina Bifida: Insights from the 2022 Provider Survey.","authors":"Lizabeth L Jordan, Rosalia Costello, Beatriz MacDonald, Amy Heffelfinger, Erin F Jones, T Andrew Zabel, Jennifer T Queally","doi":"10.46292/sci24-00023","DOIUrl":"10.46292/sci24-00023","url":null,"abstract":"<p><strong>Background: </strong>Many people with spina bifida (SB) have congenital brain malformations and receive neurosurgical intervention that can impact cognitive, behavioral, and emotional functioning. The Spina Bifida Association's (SBA) guidelines for care recommend that people with SB have neuropsychology evaluations to assess cognitive, behavioral, and emotional functioning throughout their lifespan; however, people with SB anecdotally report having trouble finding and accessing such care.</p><p><strong>Objectives: </strong>The goal of this study was to gain information about neuropsychology services available to people with SB and identify possible barriers to care.</p><p><strong>Methods: </strong>Neuropsychologists in the United States were invited to complete a practice-focused survey created by members of the Spina Bifida Neuropsychology Collaborative (SBNC). The survey was emailed to professional neuropsychology listservs and directly to providers at the SBA Clinic Care Partner and National Spina Bifida Patient Registry (NSBPR) sites.</p><p><strong>Results: </strong>Responses from 34 neuropsychologists (representing 22 sites, including 40% of SBA Clinic Care Partner sites and 67% of NSBPR sites) indicated that multilingual SB-focused neuropsychology services are available within all regions of the United States. Comprehensive, outpatient evaluations are common; however, integration of neuropsychology services into inpatient settings and multidisciplinary clinics is limited. Respondents report that waitlist time is the most frequent barrier to neuropsychology care, followed by cost/insurance/payor type, travel/transportation difficulties, and limited referrals.</p><p><strong>Conclusion: </strong>There are considerable gaps in the currently available array of US-based neuropsychology services for individuals with SB. Neuropsychologists and SB clinical programs are encouraged to strategically increase availability of neuropsychological services and expand care options.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 2","pages":"104-113"},"PeriodicalIF":2.4,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12199565/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144530245","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Willemijn X M Faber, Janneke Nachtegaal, Janneke Stolwijk, Ben J M Witteman, Renate Winkels
{"title":"Influence of Dietary Quality on Neurogenic Bowel Dysfunction in Individuals With Spinal Cord Injury.","authors":"Willemijn X M Faber, Janneke Nachtegaal, Janneke Stolwijk, Ben J M Witteman, Renate Winkels","doi":"10.46292/sci24-00055","DOIUrl":"10.46292/sci24-00055","url":null,"abstract":"<p><strong>Background: </strong>Neurogenic bowel dysfunction (NBD) occurs in up to 95% of individuals with spinal cord injury (SCI) and negatively impacts the quality of life. Although diet is an important component in the management of NBD, the relationship between diet quality and NBD is understudied in the SCI population.</p><p><strong>Objectives: </strong>To assess the diet quality of individuals with chronic SCI and explore possible relationships between diet quality, especially fiber, and symptoms of NBD, and to evaluate whether individuals with SCI themselves recognize relationships between dietary intake and NBD symptoms.</p><p><strong>Methods: </strong>Individuals with chronic SCI, recruited via their rehabilitation center, completed web-based questionnaires and 24-hour dietary recalls regarding the quality and intake of their diet and the severity of NBD. Ten individuals participated in interviews to explore their views on potential relationships between their diet and NBD.</p><p><strong>Results: </strong>Twenty-eight participants were recruited, of which ten were interviewed. All participants had symptoms of NBD of varying degrees and a low diet quality, but there was no difference between the NBD groups. The more severe NBD group had a lower intake of vegetables and a higher intake of salt. Almost half of the participants interviewed did not report experiencing an association between dietary intake and their NBD.</p><p><strong>Conclusions: </strong>A low diet quality was observed among individuals with chronic SCI, irrespective of their NBD symptoms. Many participants were unaware of a potential relationship between their diet and NBD. The sample size is insufficient to draw definitive conclusions; however, a potential hypothesis is that those with more severe NBD may consume not enough vegetables and too much salt. Further longitudinal prospective research is required to enhance nutritional guidelines for individuals with SCI and NBD.</p>","PeriodicalId":46769,"journal":{"name":"Topics in Spinal Cord Injury Rehabilitation","volume":"31 1","pages":"42-51"},"PeriodicalIF":2.4,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11848138/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143504703","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}