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1.
BMJ Neurol Open ; 6(1): e000754, 2024.
Article En | MEDLINE | ID: mdl-38818241

Background and objectives: Spontaneous spinal cord infarction (SCInf) is a rare condition resulting in acute neurological impairment. Consensus on diagnostic criteria is lacking, which may present a challenge for the physician. This review aims to analyse the current literature on spontaneous SCInf, focusing on epidemiology, the diagnostic process, treatment strategies and neurological outcomes. Methods: The study was performed in accordance with a previously published protocol. PubMed, Web of Science and Embase were searched using the keywords 'spontaneous', 'spinal cord', 'infarction' and 'ischaemic'. The eligibility of studies was evaluated in two steps by multiple reviewers. Data from eligible studies were extracted and systematically analysed. Results: 440 patients from 33 studies were included in this systematic review. Analysis of vascular risk factors showed that hypertension was present in 40%, followed by smoking in 30%, dyslipidaemia in 29% and diabetes in 16%. The severity of symptoms at admission according to the American Spinal Injury Association (ASIA) Impairment Scale was score A 19%, score B14%, score C36% and score D32%. The mean follow-up period was 34.8 (±12.2) months. ASIA score at follow-up showed score A 11%, score B 3%, score C 16%, score D 67% and score E 2%. The overall mortality during the follow-up period was 5%. When used, MRI with diffusion-weighted imaging (DWI) supported the diagnosis in 81% of cases. At follow-up, 71% of the patients were able to walk with or without walking aids. Conclusion: The findings suggest a significant role for vascular risk factors in the pathophysiology of spontaneous SCInf. In the diagnostic workup, the use of DWI along with an MRI may help in confirming the diagnosis. The findings at follow-up suggest that neurological recovery is to be expected, with the majority of patients regaining ambulation. This systematic review highlights gaps in the literature and underscores the necessity for further research to establish diagnostic criteria and treatment guidelines.

2.
Top Spinal Cord Inj Rehabil ; 30(2): 54-64, 2024.
Article En | MEDLINE | ID: mdl-38799608

The World Health Organization (WHO) recommends that infants be breastfed exclusively for the first 6 months of age. However, there are few resources available on the effects a spinal cord injury (SCI) can have for breastfeeding mothers. It is difficult to find information to address the unique challenges women with SCI experience when planning or trying to breastfeed. Our international team, including women with SCI, health care providers, and SCI researchers, aims to address the information gap through the creation of this consumer guide. The purpose of this consumer guide is to share the most common issues women with SCI experience during breastfeeding and provide information, practical suggestions, recommendations, and key resources in lay language. General information about breastfeeding is available on the internet, in books, or from friends and health care providers. We do not intend to repeat nor replace general breastfeeding information or medical advice. Breastfeeding for mothers with SCI is complex and requires a team of health care providers with complementary expertise. Such a team may include family physician, obstetrician, physiatrist, neurologist, occupational and physical therapist, lactation consultant, midwife, and psychologist. We hope this consumer guide can serve as a quick reference guide for mothers with SCI planning of trying to breastfeed. This guide will also be helpful to health care providers as an educational tool.


Breast Feeding , Mothers , Spinal Cord Injuries , Humans , Female , Mothers/psychology , Infant, Newborn , Infant
3.
Top Spinal Cord Inj Rehabil ; 30(2): 9-36, 2024.
Article En | MEDLINE | ID: mdl-38799607

The World Health Organization (WHO) recommends that children be breastfed exclusively for the first 6 months of age. This recommendation may prove challenging for women with spinal cord injury (SCI) who face unique challenges and barriers to breastfeeding due to the impact of SCI on mobility and physiology. Tailored provision of care from health care professionals (HCPs) is important in helping women navigate these potential barriers. Yet, HCPs often lack the confidence and SCI-specific knowledge to meet the needs of mothers with SCI. An international panel of clinicians, researchers, consultants, and women with lived experience was formed to create an accessible resource that can address this gap. A comprehensive survey on breastfeeding complications, challenges, resources, and quality of life of mothers with SCI was conducted, along with an environmental scan to evaluate existing postpartum guidelines and assess their relevance and usability as recommendations for breastfeeding after SCI. Building on this work, this article provides evidence-based recommendations for HCPs, including but not limited to general practitioners, obstetricians, pediatricians, physiatrists, lactation consultants, nurses, midwives, occupational therapists, and physiotherapists who work with prospective and current mothers with SCI.


Autonomic Dysreflexia , Breast Feeding , Spinal Cord Injuries , Humans , Spinal Cord Injuries/complications , Female , Autonomic Dysreflexia/etiology , Autonomic Dysreflexia/therapy , Autonomic Dysreflexia/physiopathology , Practice Guidelines as Topic , Mothers/psychology , Quality of Life , Adult
4.
Neurology ; 101(2): e114-e124, 2023 07 11.
Article En | MEDLINE | ID: mdl-37202170

BACKGROUND AND OBJECTIVES: Spinal cord infarction (SCInf) is a rare condition where consensus regarding diagnostic criteria is lacking, and misdiagnosis or delayed diagnosis can be detrimental. The aim of this study was to describe baseline findings and predictors of long-term functional outcome in a population-based cohort of patients with SCInf. METHODS: All adult patients (aged 18 years or older) treated at the spinal cord injury unit of the study center, between 2006 and 2019, and discharged with a G95 diagnosis (other and unspecified disease of the spinal cord) were screened for inclusion. The diagnostic criteria proposed by Zalewski et al. were retrospectively applied to evaluate the certainty of the SCInf diagnosis. RESULTS: A total of 270 patients were screened and 57 were included in the study, of whom 30 had a spontaneous SCInf and 27 had a periprocedural SCInf. The median American Spinal Cord Injury Association Impairment Scale (AIS) on admission was C, which at a median follow-up of 2.1 years had improved to D (p = 0.002). Compared with periprocedural cases, those with spontaneous SCInf showed significantly better admission AIS (median AIS D vs B, p < 0.001), fewer multilevel SCInf (27% vs 59%, p = 0.029), shorter hospital stay (median 22 vs 44 days, p < 0.001), and better AIS (median AIS D vs C, p < 0.001) and ambulatory status on long-term follow-up (66% vs 1%, p < 0.001). Regression analyses revealed that spontaneous SCInfs (odds ratio [OR] 5.91 [1.92-18.1], p = 0.002) and more favorable admission AIS (OR 33.6 [7.72-146], p < 0.001) were significant predictors of more favorable AIS at follow-up, with admission AIS demonstrating independent predictive ability (OR 35.9 [8.05-160], p < 0.001). DISCUSSION: SCInf is a rare neurologic emergency lacking specific management guidelines. While the presumptive diagnosis is based on the typical presentation and clinical findings, T2-weighted and diffusion-weighted MRI were the most useful diagnostic tools in establishing a definitive diagnosis. Our data show that spontaneous SCInf mostly affected a single spinal cord segment, whereas periprocedural cases were more extensive, had poorer AIS on admission, poorer ambulatory function, and longer hospital stays. Regardless of the etiology, significant neurologic improvements were seen at long-term follow-up, highlighting the importance of active rehabilitation.


Spinal Cord Injuries , Spinal Cord Ischemia , Adult , Humans , Cohort Studies , Retrospective Studies , Infarction , Recovery of Function
5.
Acta Obstet Gynecol Scand ; 101(11): 1282-1290, 2022 11.
Article En | MEDLINE | ID: mdl-36031797

INTRODUCTION: The aim of this study was to describe the rate of pregnancy in spinal cord injured women in Sweden as well as pregnancy, delivery, and neonatal outcomes. MATERIAL AND METHODS: This study was based on data from the Swedish Medical Birth Register and the National Patient Register. The study population included women with spinal cord injury who gave birth in Sweden during the period 1997 to 2015. The general population was used as reference and included all non-spinal cord injured patients who gave birth during the same period of time. RESULTS: In the spinal cord injury group, 109 births were identified. Eighty-nine (82%) of them were among paraplegic women and 20 (18%) were among tetraplegic women. Women with spinal cord injury in our study population had urinary tract infections during pregnancy in five cases (5%) and anemia during pregnancy in nine cases (8%), compared with 0.2% and 4%, respectively, in the general population. Compared with the general population more deliveries were induced in the study population, 18 (17%) in the spinal cord injury group and 12% in the general population. Vaginal delivery was achieved in 52 (48%) of the births with 42 of them (39%) being non-instrumental and 10 (9%) being instrumental vaginal deliveries. Elective cesarean section rate was 34% (n = 37). Sixteen infants (15%) were born preterm (gestational week <37). We found an overall low rate of pregnancy and delivery complications. CONCLUSIONS: Our results show predominantly favorable outcomes of pregnancy and delivery in women with spinal cord injury as well as their infants. These results are in concordance with previous research.


Cesarean Section , Spinal Cord Injuries , Infant, Newborn , Infant , Humans , Pregnancy , Female , Pregnancy Outcome/epidemiology , Cohort Studies , Sweden/epidemiology , Spinal Cord Injuries/complications , Spinal Cord Injuries/epidemiology
6.
Gait Posture ; 96: 343-350, 2022 07.
Article En | MEDLINE | ID: mdl-35820238

BACKGROUND: Spina bifida (SB) is a complex congenital malformation, often causing impaired gait performance depending on the level and extent of malformation. Research regarding gait and balance performance in adults with SB, has not been sufficiently described yet. RESEARCH QUESTION: What are the characteristics of spatiotemporal gait parameters and balance performance in adults with SB? Further, do persons with muscle function (MF) level 3 differ regarding gait and balance performance from those with MF level 1-2? METHODS: Cross-sectional observational study at an outpatient clinic. 41 adults with SB (18-65 years), who walked regularly. Spatiotemporal parameters of gait was assessed with the APDM system and balance performance with the Mini Balance Evaluation Systems Test (Mini-BESTest). Muscle strength in the legs was assessed with 0-5 manual muscle test, and participants were classified according to level of MF into groups MF1, MF2, and MF3. Two-sided t-test was used for parametric independent variables, and Cohen's d was used for effect sizes. The Mann-Whitney U test was used for non-parametric independent data and effect size was calculated by the z value (r = z/√n). RESULTS: Mean gait speed was 0.96 (SD 0.20) m/s and mean stride length 1.08 m (SD 0.17), individuals with MF3 showed significantly slower gaitspeed and shorter stride length (p < 0.05). Lumbar rotation was 21° (SD 11), and thoracic lateral sway 15° (IQR 15) with significantley difference (p < 0.001 and p < 0.05) for individuals in MF3. Mini-BESTest showed a mean score of 11.3 (SD 6.9), and individuals with MF3 showed significantly lower scores (p ≤ 0.001). SIGNIFICANCE: Gait and balance performance was reduced compared to normative data in almost all parameters, especially in persons with less muscle function. Increased knowledge from advanced gait analysis may help healthcare professionals to design rehabilitation programmes, in order to achieve and maintain a sustainable gait and balance performance.


Postural Balance , Spinal Dysraphism , Adult , Cross-Sectional Studies , Gait/physiology , Humans , Postural Balance/physiology , Spinal Dysraphism/complications , Walking Speed
7.
Spinal Cord ; 60(2): 122-128, 2022 Feb.
Article En | MEDLINE | ID: mdl-34262127

STUDY DESIGN: Cross-sectional study. OBJECTIVE: Describe and compare ambulatory performance and cognitive capacity in relation to muscle function in an adult cohort with spina bifida. Also, explore factors associated with ambulation in participants with muscle function level 3. SETTING: Specialist clinic for adults with spinal cord disorders in Stockholm, Sweden. METHODS: A total regional cohort of adults (n = 219) with spina bifida was invited, 196 (104 women, mean age 35 years, SD 13 years) participated. Mode of mobility, cognitive capacity and muscle function were investigated. For participants with muscle function level 3, factors associated with ambulation were investigated using multivariate logistic regression analysis. RESULTS: In all, 84 participants (42%) were community ambulators, 22 (12%) household ambulators and 90 (46%) wheelchair users. There was a linear association between the lower degree of muscle function and scoliosis (P < 0.001). Mode of mobility varied despite similar muscle prerequisites in participants with muscle function level 3 (n = 58). Factors associated with ambulation in participants with muscle function level 3 were the absence of scoliosis, lower BMI and higher cognitive capacity. CONCLUSIONS: Cognitive capacity and mode of mobility varied widely across the cohort. However, in participants with muscle function level 3, despite similar muscular prerequisites, a large variation in the mode of mobility was found, suggesting that other factors were involved. It is important to prevent scoliosis, support a healthy lifestyle, as well as offer cognitive screening and support to promote ambulatory function and optimise independence in the everyday lives of adults with spina bifida.


Spinal Cord Injuries , Spinal Dysraphism , Adult , Cognition , Cross-Sectional Studies , Female , Humans , Muscles , Spinal Cord Injuries/complications , Spinal Dysraphism/complications
8.
PLoS One ; 16(1): e0245453, 2021.
Article En | MEDLINE | ID: mdl-33513187

BACKGROUND: Transanal irrigation (TAI) has emerged as a key option when more conservative bowel management does not help spinal cord injured (SCI) individuals with neurogenic bowel dysfunction (NBD). AIM: To investigate the short-term efficacy and safety of an electronic TAI system (Navina Smart) in subjects with NBD. DESIGN: We present an open, prospective efficacy study on Navina Smart, in individuals with NBD secondary to SCI, studied at three months. POPULATION: Eighty-nine consecutive consenting established SCI individuals (61 male; mean age 48, range 18-77) naïve to TAI treatment were recruited from ten centres in seven countries. Subjects had confirmed NBD of at least moderate severity (NBD score ≥10). METHODS: Subjects were taught how to use the device at baseline assisted by the Navina Smart app, and treatment was tailored during phone calls until optimal TAI regime was achieved. The NBD score was measured at baseline and at three months follow up (mean 98 days). Safety analysis was performed on the complete population while per protocol (PP) analysis was performed on 52 subjects. RESULTS: PP analysis showed a significant decrease in mean NBD score (17.8 to 10, p<0.00001). In subjects with severe symptoms (defined as NBD score ≥14), mean NBD scores decreased (19.4 to 10.9, p<0.0001). The number of subjects with severe symptoms decreased from 41 (79%) subjects at baseline to 16 (31%) at three months follow-up. Device failure accounted for the commonest cause for loss of data. Side effects possibly related to the device developed in 11 subjects (12%). Discontinuation due to failure of therapy to relieve symptoms was reported by 5 subjects (6%). CONCLUSION: Navina Smart is effective for individuals with NBD, even those with severe symptoms; long-term data will follow. Whilst there were some device problems (addressed by the later stages of subject recruitment) the treatment was generally safe. CLINICAL TRIAL: (ClinicalTrials.gov number NCT02979808).


Neurogenic Bowel/therapy , Therapeutic Irrigation/methods , Adult , Equipment Design , Fecal Incontinence/etiology , Fecal Incontinence/therapy , Female , Humans , Male , Middle Aged , Neurogenic Bowel/etiology , Prospective Studies , Spinal Cord Injuries/complications , Therapeutic Irrigation/adverse effects , Therapeutic Irrigation/instrumentation
9.
J Spinal Cord Med ; 44(2): 247-252, 2021 03.
Article En | MEDLINE | ID: mdl-31549939

Objective: To examine the prevalence of postpartum depression (PPD) and postpartum anxiety (PPA) in mothers with spinal cord injury (SCI).Design: Retrospective, cross-sectional study.Setting: Online multi-national study.Participants: We surveyed an international sample of 102 women who gave birth following cervical SCI (C1-C8, n = 30), upper thoracic SCI (T1-T6, n = 12) or lower level SCI (T7 & below, n = 60). Participants were primarily from Canada and Sweden, and mean age at childbirth was 30 ± 6 years.Outcome Measures: Subscales from the Pregnancy Risk Assessment Monitoring System (PRAMS) were used to measure PPD (PRAMS-3D) and PPA (PRAMS-2A).Results: PPD and PPA were most prevalent in women with cervical SCI, followed by upper thoracic SCI then lower SCI. Self-reported PPD was more prevalent than clinically diagnosed PPD in women with cervical SCI (P = 0.03) and upper thoracic SCI (P = 0.03). With cervical SCI, 75% of women diagnosed with MDD before pregnancy scored >9 on the PRAMS PPD subscale, indicating clinically relevant PPD. However, only 10% were diagnosed with PPD. Of women with lower SCI diagnosed with MDD before pregnancy, 25% had a clinically relevant score for self-reported PPD; 7% were diagnosed.Conclusions: This is currently the largest study examining PPD and PPA after SCI. Clinicians should be aware that mothers with SCI (particularly high-level SCI) may have increased risk of PPD and PPA. PPD is poorly understood in women with SCI and may even be underdiagnosed. SCI-related risk factors for PPD and PPA should be explored.


Depression, Postpartum , Spinal Cord Injuries , Anxiety/epidemiology , Anxiety/etiology , Cross-Sectional Studies , Depression, Postpartum/epidemiology , Depression, Postpartum/etiology , Female , Humans , Pregnancy , Prevalence , Retrospective Studies , Risk Factors , Spinal Cord Injuries/complications , Spinal Cord Injuries/epidemiology
10.
Spinal Cord ; 59(2): 215-224, 2021 Feb.
Article En | MEDLINE | ID: mdl-32978510

STUDY DESIGN: A qualitative study with an emergent design using semi-structured interviews in focus groups. OBJECTIVES: To explore the expectations, experiences and desires among individuals who are prescribed drugs for spinal cord injury (SCI) neuropathic pain (NP). SETTING: SCI rehabilitation centre. METHODS: Eighteen informants with SCI and NP were enrolled. The informants originated from large and small cities in southern Sweden. Data were collected in focus groups consisting of 4-5 individuals in four separate sessions. An emergent design was employed using an interview guide containing open questions. The interviews were transcribed verbatim and data were analyzed according to qualitative content analysis. RESULTS: A model of three themes emerged: "Balancing between pain and side-effects" described the difficult choices the informants had to make between drugs and their unwanted side-effects and pain, "Desiring competence and structure in pain management" described the informants wishes regarding pain management and "From hope to personal solutions" described the process from hope of total pain relief from drugs to the development of personal strategies. CONCLUSIONS: There is a great need for improvement of SCI-related neuropathic pain management since recommended drugs are insufficiently effective and accompanied by severe side-effects that impact quality of life but also due to structural limitations and physicians' lack of competence in pain management.


Neuralgia , Pharmaceutical Preparations , Spinal Cord Injuries , Humans , Neuralgia/drug therapy , Neuralgia/etiology , Qualitative Research , Quality of Life , Spinal Cord Injuries/complications , Spinal Cord Injuries/drug therapy
11.
Spinal Cord ; 59(2): 151-158, 2021 Feb.
Article En | MEDLINE | ID: mdl-32665708

STUDY DESIGN: Cohort study OBJECTIVES: The purpose of this study was to evaluate the performance of a re-engineered device (Ferticare 2.0), which is replacing the previous standard (Ferticare 1.0) for penile vibratory stimulation in men with spinal cord injury. Most men with spinal cord injury are anejaculatory, requiring medical assistance to obtain their semen. Penile vibratory stimulation is generally recognized as the standard of care for semen retrieval in these anejaculatory men. SETTING: Major Research University in Miami, Florida, USA. METHODS: The Ferticare 2.0 device was applied to 15 men with spinal cord injury in a three-step protocol simulating normal use. Step 1: one device (2.5 mm amplitude, 100 Hz) was applied to the glans penis for 2 min. Step 2: If no ejaculation occurred, the amplitude was increased to 4.0 mm (100 Hz) and the device similarly applied. Step 3: If no ejaculation occurred, two devices, each 2.5 mm and 100 Hz were applied to the dorsum and frenulum of the glans penis. Participants at risk for autonomic dysreflexia were pretreated with sublingual nifedipine (20 mg), 15 min prior to stimulation. Blood pressure and other symptoms of autonomic dysreflexia were monitored. Participants answered a questionnaire about their experience with the device. RESULTS: Thirteen of 15 participants ejaculated with the device. No adverse events occurred. All participants commented they would recommend the device to other men with spinal cord injury. CONCLUSIONS: A re-engineered device, the Ferticare 2.0, is safe and effective for inducing ejaculation in men with spinal cord injury.


Autonomic Dysreflexia , Spinal Cord Injuries , Ejaculation , Humans , Male , Penis , Spinal Cord Injuries/complications , Spinal Cord Injuries/therapy , Vibration
12.
Int J Qual Stud Health Well-being ; 15(1): 1830702, 2020 Dec.
Article En | MEDLINE | ID: mdl-33146083

The aim of this study was to actively integrate expertise of persons living with spina bifida, to explore conditions embedded in their everyday life. This was important because young adults with spina bifida risk not being able to fully participate in the community on equal terms and in accordance with their own preferences. Photovoice, a community-based participatory research approach, was utilized to engage participants through dialogue and photography. An exhibition was created to share results with community and stakeholders. An overarching theme that characterized the experiences of the group was, "an adaptation for us, but it works for no one". Findings are presented as: "Accessibility-a never-ending project," "Tensions of a normative view," and "Power to influence." Findings integrated everyday life metaphors photographically depicted by broken elevators, unsafe transportation, closed doors and not experiencing real opportunities of involvement. Tensions in everyday life experienced by persons living with spina bifida can inform conditions relevant and necessary to support community participation, particulary among persons living with disability.


Disabled Persons/psychology , Spinal Dysraphism/psychology , Activities of Daily Living , Adult , Architectural Accessibility , Community-Based Participatory Research , Female , Humans , Male , Middle Aged , Photography , Social Participation/psychology , Sweden
13.
BMJ Open ; 10(8): e036000, 2020 08 20.
Article En | MEDLINE | ID: mdl-32819984

OBJECTIVES: To evaluate the feasibility of: (1) ReWork-SCI with regard to adherence and acceptability and (2) a study design for evaluating ReWork-SCI with regard to recruitment, retention and outcome measures. DESIGN: Pre-test and post-test, single group, feasibility study. SETTING: Spinal cord injury (SCI) unit at a regional rehabilitation centre in Sweden. PARTICIPANTS: Two women and five men (n=7). Eligible criteria: (1) sustained traumatic or non-traumatic SCI; (2) completed the first acute care episode in a hospital; (3) between 18 to 65 years of age; (4) assessed by a physician as approachable for participation in the intervention; (5) history of permanent or temporary employment; (6) self-reported desire to return to work; and (7) ability to communicate in English or Swedish. INTERVENTION: ReWork-SCI is a person-centred intervention for return-to-work (RTW), developed and evaluated using the Medical Research Council's guidelines. ReWork-SCI follows a person-centred, structured and coordinated intervention process led by a coordinator within a SCI rehabilitation team. OUTCOME MEASURES: The feasibility of ReWork-SCI and a study design was evaluated using a set of outcome measurement tools, vocational data, logbooks and semi-structured interviews. RESULTS: All eligible participants accepted enrolment and follow-up. All participants had a plan for RTW after 3 months and four participants had initiated part-time work or work trial 6 months after commencement of intervention. Adherence and acceptability were overall good. Challenges of the intervention related to the person-centred follow-up, staff shortage and rootedness in the SCI team. CONCLUSIONS: ReWork-SCI was feasible and can contribute to a systematic design of an individualised plan, facilitate decision-making and build trust in the RTW process after SCI. Core features of the intervention was the systematic structure, use of a person-centred approach and dialogue with the employer. For the effectiveness of ReWork-SCI, modifications and considerations of study design are needed.


Return to Work , Spinal Cord Injuries , Adolescent , Adult , Aged , Employment , Feasibility Studies , Female , Humans , Male , Middle Aged , Spinal Cord Injuries/therapy , Sweden , Young Adult
14.
Phys Med Rehabil Clin N Am ; 31(3): 305-318, 2020 08.
Article En | MEDLINE | ID: mdl-32624096

Neurogenic bowel has received surprisingly little attention. Among individuals with spinal cord injury, bowel function is considered a major physical and psychological problem that stems from the severe negative impact on social life and mobility. With transanal irrigation, individuals with neurogenic bowel have received an additional tool that may simplify life and improve independence. A recent survey showed that as many as 37% of the spinal cord injury patients interviewed had not heard about transanal irrigation. It should be a high priority at spinal cord injury centers to support patients with the right tools for proper bowel management and care.


Neurogenic Bowel/etiology , Neurogenic Bowel/physiopathology , Neurogenic Bowel/therapy , Spinal Cord Injuries/complications , Therapeutic Irrigation/methods , Humans , Therapeutic Irrigation/instrumentation
15.
Brain Behav ; 10(8): e01736, 2020 08.
Article En | MEDLINE | ID: mdl-32633090

OBJECTIVE: To describe health issues and living conditions in a cohort of adults living with Spina bifida. MATERIAL AND METHODS: A cross-sectional study was conducted by a multidisciplinary team. Adults with spina bifida (n = 219) were invited to participate. One-hundred-and-ninety-six persons (104 women and 92 men; 18-73 years, median age 33 years) were included. Structured interviews, questionnaires, and clinical assessments for medical, social, physical, and cognitive functions were used. RESULTS: There was large variation among participants as regards the consequences of their spina bifida. Individuals < 46 years seemed to have more secondary conditions such as hydrocephalus, Chiari II malformation, tethered cord symptoms, and latex allergy. A higher proportion of the individuals >46 years and older was able to walk, and they had performed better in primary school and on tests of psychomotor speed and executive function. CONCLUSIONS: This study demonstrates that adults with spina bifida have a complex set of physical, cognitive, and social needs that need to be addressed in order to improve their health issues and living conditions. The high prevalence of urinary and fecal incontinence, pain, and overweight underline that these issues need much attention during follow-up. The future generations of older adults may need more attention in many ways, since they at a younger age do have more complex medical conditions, lower physical and cognitive functions, and lower prerequisites for independent living and participation in society than those > 46 years today. This elucidates that adults with spina bifida need systematic follow-up services and social support throughout life.


Arnold-Chiari Malformation , Hydrocephalus , Social Conditions , Spinal Dysraphism , Adolescent , Adult , Aged , Cross-Sectional Studies , Female , Health Status , Humans , Male , Middle Aged , Social Support , Spinal Dysraphism/complications , Spinal Dysraphism/epidemiology , Young Adult
16.
Spinal Cord ; 58(1): 116-124, 2020 Jan.
Article En | MEDLINE | ID: mdl-31243318

STUDY DESIGN: Descriptive. OBJECTIVE: The present aim was to define accelerometer cut-point values for wrist-worn accelerometers to identify absolute- and relative-intensity physical activity (PA) levels in people with motor-complete paraplegics (PP) and tetraplegics (TP). SETTINGS: Rehabilitation facility in Sweden. METHODS: The participants were 26 (19 men, 7 women) with C5-C8, AIS A and B (TP) and 37 (27 men, 10 women) with T7-T12 (PP), AIS A and B. Wrist-worn accelerometer recordings (Actigraph GT3X+) were taken during seven standardized activities. Oxygen consumption was measured, as well as at-rest and peak effort, with indirect calorimetry. Accelerometer cut-points for absolute and relative intensities were defined using ROC-curve analyses. RESULTS: The ROC-curve analyses for accelerometer cut-points revealed good-to-excellent accuracy (AUC >0.8), defining cut-points for absolute intensity (2, 3, 4, 5, 6, 7 METs for PP and 2 to 6 METs for TP) and relative intensity (30, 40, 50, 60, 70, and 80% for PP and 40-80% for TP). The cut-points for moderate-to-vigorous physical activity was defined as ≥9515 vector magnitude counts per minute (VMC) for PP and ≥4887 VMC/min for TP. CONCLUSION: This study presents cut-points for wrist-worn accelerometers in both PP and TP, which could be used in clinical practice to describe physical activity patterns and time spent at different intensity levels.


Accelerometry , Exercise/physiology , Paraplegia/physiopathology , Quadriplegia/physiopathology , Spinal Cord Injuries/physiopathology , Accelerometry/statistics & numerical data , Adult , Female , Humans , Male , Middle Aged , Paraplegia/etiology , Paraplegia/rehabilitation , Quadriplegia/etiology , Quadriplegia/rehabilitation , Spinal Cord Injuries/complications , Spinal Cord Injuries/rehabilitation , Wearable Electronic Devices
17.
Spinal Cord ; 58(1): 128, 2020 Jan.
Article En | MEDLINE | ID: mdl-31801980

A correction to this paper has been published and can be accessed via a link at the top of the paper.

18.
PLoS One ; 14(12): e0222542, 2019.
Article En | MEDLINE | ID: mdl-31794548

OBJECTIVE: The aims were to describe VO2peak, explore the potential influence of anthropometrics, demographics and level of physical activity within each cohort; b) to define common, standardized activities as percentages of VO2peak and categorize these as light, moderate and vigorous intensity levels according to present classification systems, and c) to explore how clinically accessible methods such as heart-rate monitoring and Borg rating of perceived exertion (RPE) correlate or can describe light, moderate and vigorous intensity levels. DESIGN: Cross sectional. SETTING: Rehabilitation facility and laboratory environment. SUBJECTS: Sixty-three individuals, thirty-seven (10 women) with motor-complete paraplegia (MCP), T7-T12, and twenty-six (7 women) with motor-complete tetraplegia (MCT), C5-C8. INTERVENTIONS: VO2peak was obtained during a graded peak test until exhaustion, and oxygen uptake during eleven different activities was assessed and categorized using indirect calorimetry. MAIN OUTCOME MEASURES: VO2peak, Absolute and relative oxygen consumption, Borg RPE. RESULTS: Absolute VO2peak was significantly higher in men than in women for both groups, with fairly small differences in relative VO2peak. For MCP sex, weight and time spent in vigorous-intensity activity explained 63% of VO2peak variance. For MCT sex and time in vigorous-intensity activity explained 55% of the variance. Moderate intensity corresponds to 61-72% HRpeak and RPE 10-13 for MCP vs. 71-79% HRpeak, RPE 13-14 for MCT. CONCLUSION: Using current classification systems, eleven commonly performed activities were categorized in relative intensity terms, (light, moderate and vigorous) based on percent of VO2peak, HRpeak and Borg RPE. This categorization enables clinicians to better guide persons with SCI to meet required physical activity levels.


Exercise/physiology , Heart Rate/physiology , Oxygen Consumption/physiology , Adult , Cross-Sectional Studies , Exercise Test/methods , Female , Humans , Male , Middle Aged , Oxygen/metabolism , Oxygen/physiology , Paraplegia/physiopathology , Physical Exertion/physiology , Quadriplegia/physiopathology
19.
Article En | MEDLINE | ID: mdl-31632717

Study design: While clinicians who care for patients with spinal cord injury may experience heightened levels of workplace stress related to secondary trauma, little is known about the characteristics of burnout and potential protective factors among interdisciplinary professionals who care for this distinct clinical population. An online survey of self-reported burnout symptoms and meaning in work was conducted to assess the prevalence of burnout and characteristics of meaning in work among spinal cord injury professionals. Objectives: To assess symptoms of professional burnout and meaning in work among a broad-ranging cohort of spinal cord injury clinicians and researchers. Setting: A group of international spinal cord injury professionals. Methods: An online survey was developed using commonly assessed metrics of burnout and meaning in work based upon prior literature. Results: A majority of survey respondents reported feeling exhaustion (60.1%), while fewer reported feelings of burnout (41.1%) or work-life imbalance (31.9%). Many respondents found support in personal relationship from friends and family and reported using various strategies to deal with work stress, including exercise, meditation, and engaging in personally meaningful activities outside of work. Conclusions: Exhaustion is a prevalent issue for many spinal cord injury professionals and burnout appears to be a significant issue for a subset of responders, yet despite potential workplace stressors, spinal cord injury professionals reported high meaningfulness of work, positive impact from colleagues, and satisfaction with intellectual stimulation at work.


Burnout, Professional/epidemiology , Health Personnel/psychology , Job Satisfaction , Spinal Cord Injuries , Adult , Cohort Studies , Female , Humans , Male , Middle Aged , Nurses/psychology , Occupational Stress/psychology , Occupational Therapists/psychology , Physical Therapists/psychology , Physicians/psychology , Prevalence , Surveys and Questionnaires
20.
J Hum Lact ; 35(4): 742-747, 2019 Nov.
Article En | MEDLINE | ID: mdl-31051097

INTRODUCTION: Although lactation dysfunction and breastfeeding difficulties after spinal cord injury have been previously reported, there is still a lack of research on the specific challenges and aspects that require more support. This unique case of a mother with C6 tetraplegia details her breastfeeding experience before and after spinal cord injury. MAIN ISSUE: A 23-year-old woman with a 20-month-old daughter sustained a motor and sensory complete traumatic spinal cord injury in a motor-vehicle crash while she was 6 months pregnant with her second child. This resulted in complete absence of sensory function below the level of injury (including the breast) and limited hand function. In comparison with her breastfeeding experience before injury, after injury she experienced decreased milk production, absence of the milk ejection reflex, and impaired ability to pick up, hold, and position her infant. MANAGEMENT: Care aides and family members assisted this mother with picking up, positioning, and latching her infant. She also utilized alternative breastfeeding positions, nursing pillows, and wedges. Domperidone was suggested by her physiatrist to increase milk production but ultimately was not used as there were no concerns with her infant's growth or development. CONCLUSION: Breastfeeding as a recently injured mother while undergoing intensive post-injury rehabilitation was challenging. Her second child developed well and was breastfed for 3 months compared to her first child (9 months). Breastfeeding was possible for this mother after spinal cord injury, in part due to previous experience successfully breastfeeding her first child, assistance from care personnel, and nursing aids.


Breast Feeding , Perinatal Care , Pregnancy Complications , Quadriplegia , Spinal Cord Injuries , Cervical Vertebrae , Female , Humans , Infant , Infant, Newborn , Male , Pregnancy , Young Adult
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