Your browser doesn't support javascript.
loading
Show: 20 | 50 | 100
Results 1 - 20 de 22
Filter
2.
Spinal Cord ; 55(6): 566-569, 2017 Jun.
Article in English | MEDLINE | ID: mdl-28094294

ABSTRACT

OBJECTIVE: To describe the changes made to the international spinal cord injury (SCI) skin and thermoregulation function basic data set in version 1.1. SETTING: International. METHODS: An international working group reviewed suggested changes to the international SCI skin and thermoregulation function basic data set version 1.0. These changes were discussed and the agreed changes were made. Subsequently, the recommended adjustments were circulated for review to the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, the American Spinal Injury Association (ASIA) Board, around 40 national and international societies, and to interested individuals who had signed up wishing to have the opportunity to review. In addition, the suggested changes were displayed at the ISCoS and ASIA websites for at least a month for possible comments. RESULTS: The recommendation 'largest diameter, including undermining' is changed to: 'Largest undermining', and a description of how to measure this is inserted. The 'smallest opening diameter' is changed to: 'Width' as the maximum dimension perpendicular to the length axis. In the literature, there is a tendency to replace 'grades' or 'stages' with 'categories'; therefore, the word 'category' is used instead of 'grade' or 'stage'. CONCLUSIONS: Impracticable measurements have been adjusted and new terminology adopted. All are to be found on ISCoS website: http://www.iscos.org.uk/international-sci-skin-and-thermoregulation-function-data-sets.


Subject(s)
Body Temperature Regulation , Datasets as Topic , Skin/physiopathology , Spinal Cord Injuries/physiopathology , Humans , Internationality , Societies, Medical , Terminology as Topic
3.
Spinal Cord ; 55(1): 98-104, 2017 Jan.
Article in English | MEDLINE | ID: mdl-27431661

ABSTRACT

STUDY DESIGN: This is a multicenter prospective cohort study. OBJECTIVES: The objective of this study was to describe and compare the impact of health problems secondary to spinal cord injury (SCI) on functioning at home and on social activities at 1 and 5 years after discharge from first inpatient rehabilitation. SETTING: The study was conducted in a Dutch community. METHODS: Participants with SCI who use a wheelchair for everyday mobility (N=110) completed a self-report questionnaire as part of a larger cohort study including four items on extra time needed (body care, bladder and bowel regulation, 'organization' and transportation) and impact of 10 health problems on functioning at home and on social activities. The 10 health problems include secondary health conditions (bladder regulation, bowel regulation, decubitus, pain, spasticity, gain in body weight and edema), psychosocial problems (sexuality, having difficulty with being dependent on help from others) and handicap management. RESULTS: Median extra time needed for self-management and transportation was not significantly higher 1 year after discharge (16 (IQR 13.5) h per week) compared with 5 years after discharge (13 (IQR 17) h per week) (P=0.925). Participants reported slightly less impact, comparing the severity sum-score (range 10-50) of the 10 health problems on functioning at home and in social activities, 5 years post discharge (20 and 17, respectively) than 1 year post discharge (21 and 18, respectively; P<0.05). Most frequently mentioned health problems were handicap management, being dependent on help from others, bladder regulation, bowel regulation, pain and sexuality. CONCLUSIONS: The impact of health problems after SCI is considerable and hardly diminishes over time. These results emphasize the need for structured long-term care for people with SCI.


Subject(s)
Spinal Cord Injuries/complications , Spinal Cord Injuries/rehabilitation , Activities of Daily Living , Adult , Aged , Female , Humans , Inpatients , Male , Middle Aged , Prospective Studies , Self Care , Self Report , Severity of Illness Index , Social Behavior , Spinal Cord Injuries/physiopathology , Spinal Cord Injuries/psychology , Time Factors , Treatment Outcome , Wheelchairs , Young Adult
4.
Spinal Cord ; 54(11): 1025-1030, 2016 Nov.
Article in English | MEDLINE | ID: mdl-27067656

ABSTRACT

STUDY DESIGN: Explorative retrospective files study. OBJECTIVES: To document end-of-life decisions (ELDs) in in-hospital deaths after new traumatic spinal cord injury (TSCI). SETTING: The Netherlands. METHODS: Discharge letters concerning patients with TSCI discharged from Dutch acute hospitals in 2010 were analysed. Data were extracted on survival, personal and lesion characteristics, comorbidities, other injuries, preexisting spinal stenosis, stabilising surgery, length of hospital stay and the presence and types of ELDs. Characteristics of deceased patients and survivors were compared using χ2 and T-tests. Characteristics of the deceased patients and ELDs were further explored. RESULTS: A total of 185 patients with new TSCI were identified. Twenty-six patients were excluded as their survival status at discharge was unknown-for example, because of discharge to another hospital without information about their final discharge. Thirty of the remaining 159 patients died during their initial hospital stay (18.9%). Deceased patients were older and had more often high cervical and motor complete injuries than survivors. The circumstances of death were sparsely documented, and in nine cases, it was not possible to determine the absence or the presence of an ELD. ELDs were reported in 19 deaths (63.3%). All were non-treatment decisions, and almost all (89.5%) were decisions of withdrawal of treatment. There were no cases of documented euthanasia or physician-assisted suicide. CONCLUSION: ELDs were reported in the majority of in-hospital deaths after new TSCI in the Netherlands (63.3%), and all were non-treatment decisions.


Subject(s)
Decision Making , Spinal Cord Injuries/mortality , Spinal Cord Injuries/psychology , Terminal Care/statistics & numerical data , Adolescent , Adult , Aged , Aged, 80 and over , Female , Hospitalization , Humans , Male , Middle Aged , Netherlands , Retrospective Studies , Survival Analysis , Terminally Ill , Young Adult
5.
Spinal Cord ; 54(4): 314-8, 2016 Apr.
Article in English | MEDLINE | ID: mdl-26099212

ABSTRACT

STUDY DESIGN: Cross-sectional validation study. OBJECTIVES: To examine the construct and concurrent validity of the International Spinal Cord Injury (SCI) Quality of Life (QoL) Basic Data Set. SETTING: Dutch community. PARTICIPANTS: People 28-65 years of age, who obtained their SCI between 18 and 35 years of age, were at least 10 years post SCI and were wheelchair users in daily life. MEASURE(S): The International SCI QoL Basic Data Set consists of three single items on satisfaction with life as a whole, physical health and psychological health (0=complete dissatisfaction; 10=complete satisfaction). Reference measures were the Mental Health Inventory-5 and three items of the World Health Organization Quality of Life measure. RESULTS: Data of 261 participants were available. Mean time after SCI was 24.1 years (s.d. 9.1); 90.4% had a traumatic SCI, 81.5% a motor complete SCI and 40% had tetraplegia. Mean age was 47.9 years (s.d. 8.8) and 73.2% were male. Mean scores were 6.9 (s.d. 1.9) for general QoL, 5.8 (s.d. 2.2) for physical health and 7.1 (s.d. 1.9) for psychological health. No floor or ceiling effects were found. Strong inter-correlations (0.48-0.71) were found between the items, and Cronbach's alpha of the scale was good (0.81). Correlations with the reference measures showed the strongest correlations between the WHOQOL general satisfaction item and general QoL (0.64), the WHOQOL health and daily activities items and physical health (0.69 and 0.60) and the Mental Health Inventory-5 and psychological health (0.70). CONCLUSIONS: This first validity study of the International SCI QoL Basic Data Set shows that it appears valid for persons with SCI.


Subject(s)
Quality of Life/psychology , Spinal Cord Injuries/psychology , Adult , Aged , Cross-Sectional Studies , Databases, Factual/statistics & numerical data , Female , Humans , Male , Mental Health , Middle Aged , Psychometrics , Reproducibility of Results , Spinal Cord Injuries/physiopathology , Statistics as Topic , Surveys and Questionnaires , Wheelchairs
6.
Spinal Cord ; 53(7): 539-43, 2015 Jul.
Article in English | MEDLINE | ID: mdl-25753494

ABSTRACT

STUDY DESIGN: This is a prospective cohort study. OBJECTIVES: The objective of this study was to predict the progress of healing of pressure ulcers (PUs) in spinal cord injury (SCI) patients after the first 4 weeks. SETTING: The study was conducted in a specialized SCI rehabilitation unit in The Netherlands. METHODS: Weekly measurements of length, width and depth/undermining of grades II-IV PUs under sacrum or ischial tuberosity in SCI patients with the 'Decu-stick' were taken. The speed of reduction of the greatest dimension in the first 4 weeks of the granulation-epithelization (G-E) phase was compared with the speed of reduction of this dimension after week 4 until the end of observation. RESULTS: Fifty-one PUs in 45 patients were measured. During the first 4 weeks of the G-E phase, the greatest dimension of 23/51 PUs reduced with a speed of ⩾0.5 cm per week. In 22 of these 23 PUs, this speed remained ⩾0.5 from week 4 until the end of observation (weeks 5-22). Closure: 21 patients (pts); operation: 2 pts. Of 28/51 PUs, this dimension reduced with <0.5 cm per week. In 27/28 PUs, this speed remained <0.5 from week 4 until the end of observation (weeks 9-37). Closure: 6 pts; operation: 16 pts; discharge with open ulcer: 6 pts. CONCLUSION: Measurement of PUs in SCI patients with the 'Decu-stick' provides a reliable, quick, cheap and easy-to-learn bedside method to predict the progress of healing in PUs in SCI patients after 4 weeks of conservative treatment with a positive predictive value of 0.95 and an negative predictive value of 0.96. This provides a scientific basis for the decision on operative or alternative conservative treatment.


Subject(s)
Dermatology/instrumentation , Point-of-Care Testing , Pressure Ulcer/diagnosis , Spinal Cord Injuries/complications , Spinal Dysraphism/complications , Adult , Aged , Aged, 80 and over , Equipment Design , Female , Humans , Ischium , Male , Middle Aged , Pressure Ulcer/etiology , Pressure Ulcer/pathology , Prognosis , Prospective Studies , Sacrum , Young Adult
7.
Spinal Cord ; 52(6): 483-8, 2014 Jun.
Article in English | MEDLINE | ID: mdl-24686827

ABSTRACT

STUDY DESIGN: Prospective multicentre cohort study. OBJECTIVES: To determine mortality, causes and determinants of death of individuals with spinal cord injury (SCI) within five years after first inpatient rehabilitation. SETTING: The Netherlands. METHODS: Patients were included on admission to first clinical rehabilitation after traumatic or nontraumatic SCI. INCLUSION CRITERIA: age between 18 and 65, American Spinal Injury Association impairment scale A-D and expected long-term wheelchair dependency. Information about survival, cause of death, relevant comorbidity and psychosocial circumstances was obtained from the rehabilitation physician or general practitioner. Determinants of death were retrieved from a prospectively collected database. Deceased persons and survivors were compared using χ(2)-test and t-test. Cox regression analysis was performed to describe independent predictors of death. The Kaplan-Meier method was used to calculate survival curves for independent predictors. Excess mortality was described by a standardized mortality ratio (SMR). RESULTS: Mean duration of follow up was 6.2 years. A total of 27 persons (12.2%) died during this period (SMR 5.3). Main causes of death were cardiovascular disease (37.0%), pulmonary disease (29.6%) and neoplasm (14.8%). Older age at injury, nontraumatic SCI, family history of cardiovascular disease, less social support and a history of other medical conditions on admission were related to death. Older age at injury, nontraumatic SCI and a history of other medical conditions were independent predictors of death. CONCLUSION: Twelve per cent of persons with SCI who had survived the acute hospital phase died during follow up (SMR 5.3). The main causes of death were cardiovascular and pulmonary disease.


Subject(s)
Spinal Cord Injuries/mortality , Spinal Cord Injuries/rehabilitation , Adolescent , Adult , Age Factors , Aged , Cardiovascular Diseases/mortality , Comorbidity , Databases, Factual , Disability Evaluation , Female , Follow-Up Studies , Humans , Kaplan-Meier Estimate , Lung Diseases/mortality , Male , Middle Aged , Netherlands/epidemiology , Prospective Studies , Survival Analysis , Wheelchairs , Young Adult
8.
Spinal Cord ; 52(4): 258-63, 2014 Apr.
Article in English | MEDLINE | ID: mdl-24445971

ABSTRACT

STUDY DESIGN: Retrospective files study. OBJECTIVE: To update epidemiological data on the incidence of traumatic spinal cord injury (TSCI) in The Netherlands. SETTING: The Netherlands. METHODS: From the Dutch National acute-care hospital database, all records of patients discharged with International Classification of Diseases 9th edition codes 806 or 952 in 2010 were selected. For each record, we requested an anonymised copy of the hospital discharge letter. We analysed the received letters for TSCI, defined as a newly acquired traumatic transverse lesion of the spinal cord or cauda equina, resulting in loss of motor, sensory, bladder or bowel function below the level of the lesion, lasting longer than 2 weeks. We further extracted data on demographic and SCI characteristics and discharge destination. RESULTS: We received 372 discharge letters or a confirmation that the patient did not have TSCI. A total of 185 patients with TSCI were identified, of whom 30 died during acute-care hospital stay. We estimated the incidence of TSCI as 14.0 per million per annum including patients and 11.7 per million per annum excluding patients who did not survive the acute phase. Most patients were male (74%), had tetraplegia (69%) and an motor incomplete lesion (62%). Median age was 62 years (range 13-96). Discharge destination was a rehabilitation centre specialized in SCI in 78% of patients with motor complete TSCI and 47% of patients with motor incomplete TSCI. CONCLUSION: The estimated incidence of TSCI surviving the acute phase was 11.7 per million per annum in the Netherlands in 2010. A substantial proportion of these patients was not referred to a specialized rehabilitation centre.


Subject(s)
Spinal Cord Injuries/epidemiology , Adolescent , Adult , Aged , Aged, 80 and over , Databases, Factual , Female , Hospitalization/statistics & numerical data , Hospitalization/trends , Humans , Incidence , Male , Middle Aged , Netherlands/epidemiology , Rehabilitation Centers/statistics & numerical data , Rehabilitation Centers/trends , Retrospective Studies , Spinal Cord Injuries/etiology , Spinal Cord Injuries/rehabilitation , Young Adult
9.
Spinal Cord ; 49(1): 106-12, 2011 Jan.
Article in English | MEDLINE | ID: mdl-20531357

ABSTRACT

STUDY DESIGN: Multicenter prospective cohort study. OBJECTIVES: To determine the occurrence and predictors for pressure ulcers in patients with spinal cord injury (SCI) during primary in-patient rehabilitation. SETTING: Eight Dutch rehabilitation centres with specialized SCI units. METHODS: The occurrence, location and stage of pressure ulcers were registered between admission and start of functional rehabilitation (called acute rehabilitation phase) and between start of functional rehabilitation and discharge. Possible risk factors for the occurrence of pressure ulcers during functional rehabilitation (personal and lesion characteristics, complications and functional independence) were measured at the start of functional rehabilitation and were entered as predictors in univariate and multivariate logistic regression analysis with pressure ulcers during functional rehabilitation as the dependent variable. RESULTS: Data for 193 patients (86%) were available. The occurrence of pressure ulcers, including stage 1, was 36.5% during acute rehabilitation phase and 39.4% during functional rehabilitation. Most pressure ulcers were located at the sacrum (43%), followed by heel (19%) and ischium (15%). The significant risk factors for pressure ulcers during functional rehabilitation were motor completeness of the lesion, tetraplegia, pressure ulcer during acute rehabilitation phase, pneumonia and/or pulmonary disease, low score on the Functional Independence Measure (FIM) self-care, continence, transfers, locomotion and total FIM motor score. Having had a pressure ulcer during acute rehabilitation phase was the strongest risk factor. CONCLUSION: The occurrence of pressure ulcers was comparable with other studies. A few significant risk factors were found, of which having had a pressure ulcer during acute rehabilitation phase being the strongest predictor.


Subject(s)
Pressure Ulcer/epidemiology , Spinal Cord Injuries/epidemiology , Spinal Cord Injuries/rehabilitation , Adult , Cohort Studies , Comorbidity/trends , Female , Humans , Incidence , Male , Middle Aged , Physical Therapy Modalities , Predictive Value of Tests , Pressure Ulcer/diagnosis
10.
Spinal Cord ; 48(9): 657-63, 2010 Sep.
Article in English | MEDLINE | ID: mdl-20585327

ABSTRACT

STUDY DESIGN: A questionnaire survey. OBJECTIVES: To evaluate the need for the introduction of quantitative diagnostic criteria for the traumatic central cord syndrome (TCCS). SETTING: An online questionnaire survey with participants from all over the world. METHODS: An invitation to participate in an eight-item online survey questionnaire was sent to surgeon members of AOSpine International. RESULTS: Out of 3340 invited professionals, 157 surgeons (5%) from 41 countries completed the survey. Whereas most of the respondents (75%) described greater impairment of the upper extremities than of the lower extremities in their own TCCS definitions, symptoms such as sensory deficit (39%) and bladder dysfunctions (24%) were reported less frequently. Initially, any difference in motor strength between the upper and lower extremities was considered most frequently (23%) as a 'disproportionate' difference in power. However, after presenting literature review findings, the majority of surgeons (61%) considered a proposed difference of at least 10 points of power (based on the Medical Research Council scale) in favor of the lower extremities as an acceptable cutoff criterion for a diagnosis of TCCS. Most of the participants (40%) felt that applying a single criterion to the diagnosis of TCCS is insufficient for research purposes. CONCLUSION: Various definitions of TCCS were used by physicians involved in the spinal trauma care. The authors consider a difference of at least 10 motor score points between upper and lower extremity power a clear diagnostic criterion. For clinical research purposes, this diagnostic criterion can be considered as a face valid addendum to the commonly applied TCCS definition as introduced by Schneider et al.


Subject(s)
Central Cord Syndrome/diagnosis , Data Collection/standards , Disability Evaluation , Muscle Weakness/diagnosis , Paralysis/diagnosis , Surveys and Questionnaires/standards , Central Cord Syndrome/complications , Central Cord Syndrome/physiopathology , Diagnosis, Differential , Humans , Muscle Weakness/etiology , Muscle Weakness/physiopathology , Paralysis/etiology , Paralysis/physiopathology
11.
Spinal Cord ; 48(2): 92-9, 2010 Feb.
Article in English | MEDLINE | ID: mdl-19949418

ABSTRACT

STUDY DESIGN: Review. OBJECTIVES: To identify the pressure ulcer healing assessment instrument that is the best choice for use in spinal cord injury rehabilitation. METHODS: Articles were retrieved from PubMed. Inclusion criteria were written in English, published up to December 2008 and describing instruments evaluated in more than one study. Search terms were pressure ulcer, wound healing, severity of illness index, reproducibility of results, sensitivity and specificity. Articles describing pressure ulcer staging scales and articles not describing clinimetric properties of an instrument were excluded. Validity, reliability, responsiveness and feasibility for routine clinical use were described of all instruments evaluated in two or more studies. RESULTS: Eleven instruments were described. Clinimetric information was incomplete for all instruments. Clinimetric information was most complete and promising for two instruments: 'ruler length and width' and the 'Sessing' scale. The ruler method showed good intra-rater and inter-rater reliability and good concurrent validity. The 'Sessing' scale has a moderate concurrent validity but was not tested for its responsiveness. CONCLUSION: Further study of the clinimetric properties of pressure ulcer assessment instruments is necessary before the best instrument can be selected.


Subject(s)
Monitoring, Physiologic/methods , Pressure Ulcer/physiopathology , Wound Healing/physiology , Humans , Outcome Assessment, Health Care/methods , Pressure Ulcer/etiology , Reproducibility of Results , Spinal Cord Injuries/complications , Spinal Cord Injuries/rehabilitation
12.
Spinal Cord ; 48(5): 423-8, 2010 May.
Article in English | MEDLINE | ID: mdl-19884896

ABSTRACT

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To describe the care received, care needs and preventability of secondary conditions according to persons with long-term spinal cord injury (SCI) living at home. SETTING: The Netherlands. METHODS: A questionnaire was sent to all members of the Dutch SCI Patient Organisation. From a list of 26 SCI secondary conditions, participants chose the five conditions they perceived as most important. For each of these conditions, they described the type of care they received, their need for (extra) care and its preventability. RESULTS: Response rate was 45% (n=453) and mean time after injury was 13.3 years. In case of secondary conditions, participants were more likely to visit their general practitioner (58%) than another medical specialist (29%) or rehabilitation specialist (25%). For all most-important secondary conditions, care was received in 47% and care, or extra care, was needed in 41.3%. Treatment was the type of care most often received (29.5%) and needed (17.2%). However, for information and psychosocial care, the care needed (12.2 and 9.9%, respectively) was higher than the care received (7.6 and 5.9%, respectively). Thirty-four percent of all most-important secondary conditions were perceived as preventable, the rate increasing to 52.8% for pressure sores, of which 29.9% were considered to be preventable by the participants themselves. CONCLUSIONS: This study showed substantial unmet care needs in persons with long-term SCI living at home and underlines the further improvement of long-term care for this group. Information, psychosocial care and self-efficacy seem to be the areas to be enhanced.


Subject(s)
Health Services Needs and Demand/statistics & numerical data , Home Care Services/statistics & numerical data , Quality of Health Care/statistics & numerical data , Spinal Cord Injuries/complications , Spinal Cord Injuries/nursing , Adolescent , Adult , Aged , Aged, 80 and over , Caregivers/statistics & numerical data , Caregivers/trends , Cross-Sectional Studies , Female , Health Care Surveys , Health Services Accessibility/statistics & numerical data , Health Services Accessibility/trends , Health Services Needs and Demand/trends , Home Care Services/trends , Humans , Male , Medicine/statistics & numerical data , Medicine/trends , Middle Aged , Netherlands , Pain/etiology , Pain/nursing , Pain/psychology , Patient Satisfaction/statistics & numerical data , Pressure Ulcer/etiology , Pressure Ulcer/nursing , Pressure Ulcer/psychology , Quality of Health Care/trends , Quality of Life/psychology , Social Support , Spasm/etiology , Spasm/nursing , Spasm/psychology , Spinal Cord Injuries/psychology , Surveys and Questionnaires , Urinary Bladder, Neurogenic/etiology , Urinary Bladder, Neurogenic/nursing , Urinary Bladder, Neurogenic/psychology , Young Adult
13.
Spinal Cord ; 47(4): 339-44, 2009 Apr.
Article in English | MEDLINE | ID: mdl-19002154

ABSTRACT

STUDY DESIGN: Multi-centre prospective descriptive study. OBJECTIVE: To establish a profile of the population affected with traumatic and non-traumatic spinal cord injury (SCI) admitted to rehabilitation centres in the Netherlands and Flanders (Belgium) and to describe determinants of length of stay (LOS) and functional outcome. SETTING: Eleven rehabilitation centres in the Netherlands and Flanders. PATIENTS: A total of 919 patients with traumatic and non-traumatic SCI on first admission to rehabilitation centres between 2002 and 2007. METHODS: Information about LOS, functional outcome and personal and injury characteristics was derived from a joint data set developed for this project. RESULTS: A total of 54.7% of patients with SCI had a non-traumatic lesion. The group of patients with non-traumatic SCI showed a more even gender distribution, a more advanced age and less severe lesion characteristics than the group of patients with traumatic SCI. Linear regression models explained 32% of the variance of LOS and 42% of the variance of functional outcome. Functional status on admission was the strongest determinant of LOS and completeness of the lesion was the strongest determinant of functional outcome. Aetiology (traumatic versus non-traumatic) was a weak independent determinant of LOS but was not an independent determinant of functional outcome. CONCLUSION: Patients with non-traumatic SCI formed a majority in the Dutch and Flemish SCI population. Although the characteristics of patients with traumatic and non-traumatic SCI clearly differed, rehabilitation of patients with non-traumatic SCI appears at least as efficient as rehabilitation of patients with traumatic SCI.


Subject(s)
Length of Stay/statistics & numerical data , Outcome Assessment, Health Care , Recovery of Function/physiology , Rehabilitation Centers/statistics & numerical data , Spinal Cord Injuries , Activities of Daily Living , Adolescent , Adult , Age Distribution , Aged , Aged, 80 and over , Belgium/epidemiology , Disability Evaluation , Female , Humans , Linear Models , Male , Middle Aged , Netherlands/epidemiology , Prospective Studies , Retrospective Studies , Severity of Illness Index , Spinal Cord Injuries/epidemiology , Spinal Cord Injuries/physiopathology , Spinal Cord Injuries/rehabilitation , Young Adult
14.
Dev Med Child Neurol ; 50(10): 772-7, 2008 Oct.
Article in English | MEDLINE | ID: mdl-18699861

ABSTRACT

The aim of this study was to: (1) assess work participation among young adults with spina bifida, (2) identify problems perceived in finding employment, and (3) examine which determinants are related to work participation. This cross-sectional study was a follow-up study to the Adolescents with SPina bifida In the Netherlands (ASPINE) study. Data regarding work participation and problems finding employment were collected with questionnaire developed by the authors. Data on disease characteristics were taken from the ASPINE database. Responses of 136 participants were analyzed (77 females, 59 males; mean age 26 years 1 month [SD 3y1mo], range 21-32y). Twenty participants had spina bifida occulta and 116 had spina bifida aperta, 96 of whom also had hydrocephalus. Work participation rate was 62.5%, of which 22.4% was in a sheltered workplace. Significant determinants of having paid work for at least 1 hour a week were: level of education, level of lesion, hydrocephalus, IQ, functional independence, and ambulation. Significant determinants of full-time employment were the same, plus sex and type of spina bifida. In a multivariate backward logistic regression analysis, however, only level of education remained a significant predictor of work participation. Sex, level of education, and self-care independence were significant predictors of full-time employment. This study shows the importance of educational support and self-care independence training for children with spina bifida.


Subject(s)
Activities of Daily Living/psychology , Cost of Illness , Disabled Persons/statistics & numerical data , Employment/economics , Spinal Dysraphism/economics , Adolescent , Adult , Employment/statistics & numerical data , Female , Humans , Logistic Models , Male , Spinal Dysraphism/psychology , Spinal Dysraphism/rehabilitation , Young Adult
15.
Clin Rehabil ; 21(11): 997-1006, 2007 Nov.
Article in English | MEDLINE | ID: mdl-17984152

ABSTRACT

OBJECTIVE: To evaluate whether transmural care for people with spinal cord injury living in the community has more impact on health outcomes than traditional follow-up care within the Netherlands. DESIGN: Quasi-experiment with 12 months of follow-up. SETTING: Eight Dutch rehabilitation centres. SUBJECTS: Thirty-one patients who received transmural care in two ;experimental' rehabilitation centres were compared with a matched sample of 31 patients having received ;usual follow-up care' in six other rehabilitation centres. INTERVENTION: The core component of the transmural care consists of a transmural nurse, who 'liaises' between former patients living in the community, primary care professionals and the rehabilitation team. The transmural care model provides activities to support patients and their family/partners and activities to promote continuity of care. MAIN MEASURES: The prevalence of pressure sores and urinary tract infections; the number and duration of re-admissions to hospital and rehabilitation centre due to pressure sores, bladder and bowel problems; and the experienced quality of follow-up care. RESULTS: The transmural care, as implemented, did not influence the health outcomes. The prevalence of pressure sores, urinary tract infections and the number of re-admissions (due to pressure sores, bladder and bowel problems) was respectively 13, 13 and 4 in the intervention group versus 14, 15 and 6 in the usual follow-up care group. Since the transmural care had been incompletely implemented and there were methodological and practical limitations, we formulated no final conclusions regarding its effectiveness. CONCLUSION: Implementing the transmural care model strictly according to protocol may improve its effectiveness.


Subject(s)
Community Health Nursing/organization & administration , Continuity of Patient Care , Patient Care Team/organization & administration , Rehabilitation Centers/organization & administration , Spinal Cord Injuries/rehabilitation , Adult , Community Health Nursing/methods , Female , Humans , Male , Middle Aged , Models, Organizational , Netherlands , Outcome and Process Assessment, Health Care , Patient Readmission/statistics & numerical data , Patient Satisfaction , Pressure Ulcer/etiology , Pressure Ulcer/prevention & control , Program Evaluation , Quality Indicators, Health Care , Spinal Cord Injuries/complications , Urinary Bladder Diseases/etiology , Urinary Bladder Diseases/prevention & control
16.
Int J Sports Med ; 28(10): 880-6, 2007 Oct.
Article in English | MEDLINE | ID: mdl-17436205

ABSTRACT

The purpose of the present study was to investigate whether mechanical efficiency (ME) relates to wheelchair propulsion capacity and wheelchair performance tasks during and after rehabilitation of people with a spinal cord injury (SCI). Eighty participants with a SCI were tested during rehabilitation (3 x) and 1 year after discharge. Two 3-minute submaximal exercise blocks, a maximal wheelchair exercise test, and four wheelchair performance tasks were performed. ME, peak power output (PO (peak)), the sum of the performance times of a 15-m sprint and figure-of-eight, and the heart rate reserve (%HRR) during 10 s of wheelchair propulsion on a 3 % and 6 % slope were calculated. The relationship between ME and PO (peak), %HRR and performance time was tested with a multilevel regression analysis. ME showed a significant relationship with PO (peak) (p

Subject(s)
Spinal Cord Injuries/rehabilitation , Task Performance and Analysis , Wheelchairs , Adult , Exercise Test , Female , Humans , Male , Middle Aged , Netherlands
17.
Dev Med Child Neurol ; 49(3): 192-7, 2007 Mar.
Article in English | MEDLINE | ID: mdl-17355475

ABSTRACT

The aims of this study were to compare the perceived health of young adults with spina bifida with a population without disability, and to determine the effect of the disease characteristics and resulting impairments on perceived health. This cross-sectional study is part of the Adolescents with Spina Bifida in the Netherlands study. Data were collected by physical examination and a questionnaire. In total, 179 patients (age range 16-25y) participated in the study and perceived health data were completed for 164 participants (92 females, 72 males; mean age 20y 7mo [SD 2y 9mo]). Twenty-six participants had spina bifida occulta and 138 had spina bifida aperta, of whom 115 also had hydrocephalus. Perceived health was measured with the Medical Outcome Study 36-item Short-form Health Survey (SF-36), a generic health status measure. SF-36 scores of young adults with spina bifida were below those of an age-matched population group for six of the eight domains. This difference was largest for the physical functioning domain. Although these differences were statistically significant they were small. Findings for the emotional health domains (vitality, mental health, role problems due to emotional problems) did not differ at all from the population group.


Subject(s)
Attitude to Health , Health Status , Self-Assessment , Spinal Dysraphism/psychology , Adolescent , Adult , Cross-Sectional Studies , Female , Humans , Male , Matched-Pair Analysis , Reference Values , Self Concept
18.
Spinal Cord ; 44(11): 668-75, 2006 Nov.
Article in English | MEDLINE | ID: mdl-16462822

ABSTRACT

STUDY DESIGN: A multicenter prospective cohort study. OBJECTIVE: To compare the demographic data of the included population with other studied spinal cord injury (SCI) populations in the international literature. SETTING: Eight Dutch rehabilitation centers with a specialized SCI unit. METHODS: A total of 205 individuals with SCI participated in this study. Information about personal, lesion and rehabilitation characteristics were collected at the beginning of active rehabilitation by means of a questionnaire. RESULTS: The research group mainly consisted of men (74%), of individuals with a paraplegia (59%), and had a complete lesion (68%). The SCI was mainly caused by a trauma (75%), principally due to a traffic accident (42%). The length of clinical rehabilitation varied between 2 months and more than a year, which seemed to be dependent on the lesion characteristics and related comorbidity. CONCLUSIONS: The personal and lesion characteristics of the subjects of the multi-center study were comparable to data of other studies, although fewer older subjects and subjects with an incomplete lesion were included due to the inclusion criteria 'age' and 'wheelchair-dependent'. The length of stay in rehabilitation centers in The Netherlands was longer compared to Denmark but much longer than in eg Australia and the USA.


Subject(s)
Demography , Movement/physiology , Physical Therapy Modalities , Recovery of Function/physiology , Spinal Cord Injuries/epidemiology , Spinal Cord Injuries/rehabilitation , Adult , Age Factors , Cohort Studies , Female , Humans , Male , Middle Aged , Netherlands/epidemiology , Sex Factors , Surveys and Questionnaires , Time Factors , Wheelchairs
19.
Spinal Cord ; 44(5): 287-96, 2006 May.
Article in English | MEDLINE | ID: mdl-16186857

ABSTRACT

STUDY DESIGN: A controlled single-case design: A1 (baseline: 6 weeks), B (intervention: 12 weeks of treadmill training (TT), maximally five times a week/30 min a day), A2 (wash-out: 6 weeks), follow-up measurement: 6 months. OBJECTIVE: To investigate the effects of TT on functional health status (FHS) and quality of life (QoL) in subjects with a chronic incomplete spinal cord injury (ISCI). SETTING: Rehabilitation Department, University Medical Centre Utrecht, The Netherlands. METHODS: Three male subjects with a stable (>48 months postinjury) ISCI, American Spinal Injury Association (ASIA) class C (n=2) and D (n=1). Performance-based walking, subject's perception concerning quality of life (SEIQoL) and activities of daily living Canadian Occupational Performance Measure (COPM). RESULTS: The results of the three subjects were variable. Changes in QoL were relatively small and diverse. After 6 months' follow-up, QoL was unchanged in subjects 1 and 2, and improved in subject 3. In subject 2, performance of activities of daily living (ADL) was significantly improved, consistent with his perception of improvement (P<0.05), and this improvement was sustained throughout the follow-up period. Walking ability improved in subject 3 (P<0.05) but performance of other activities remained stable. Performance of ADL decreased slightly in subject 1 whereas his walking speed and Get up and Go performance improved (P<0.05). CONCLUSIONS: This study demonstrates positive effects of TT on FHS. A randomised clinical trial should be executed before definite conclusions about the effect of TT on FHS and QoL can be drawn. SPONSORSHIP: KF Hein Foundation and Rehabilitation Centre De Hoogstraat Scientific Foundation.


Subject(s)
Body Weight , Exercise Therapy/methods , Health Status , Physical Therapy Modalities , Quality of Life , Spinal Cord Injuries , Disability Evaluation , Humans , Male , Middle Aged , Pilot Projects , Spinal Cord Injuries/physiopathology , Spinal Cord Injuries/psychology , Spinal Cord Injuries/rehabilitation , Statistics, Nonparametric , Time Factors , Treatment Outcome , Walking/physiology
20.
J Neurol ; 253(2): 159-62, 2006 Feb.
Article in English | MEDLINE | ID: mdl-16222429

ABSTRACT

BACKGROUND: Spinal dural arteriovenous fistulas (SDAVF) are rare and present with non-specific symptoms. The diagnosis is difficult and it is therefore conceivable that patients may not be recognized. METHODS: We reviewed the intake forms of patients who had been admitted to the spinal cord injury ward of a rehabilitation center in the period 1980-2004 to identify possible patients with an undiagnosed SDAVF. Clinical and radiological data were evaluated in selected cases. RESULTS: In 20 of 1429 newly admitted patients to the rehabilitation center (in 614 of whom trauma was not the cause), we restudied the CT myelograms, MRI scans or spinal angiograms and in two of these we found an undiagnosed SDAVF, and one cerebral dural arteriovenous fistula. One of these three was diagnosed with SDAVF 8 years after the admission to the rehabilitation center; the other two patients had never been diagnosed with SDAVF. In 9 patients a diagnosis of SDAVF had already been established by the time they were admitted to the spinal cord unit. In 20 other patients the admission diagnosis was a vascular lesion or 'progressive myelopathy' but appropriate radiological studies had been destroyed or had never been performed. CONCLUSION: Our results suggest that spinal dural arteriovenous fistulas are an underdiagnosed condition.


Subject(s)
Central Nervous System Vascular Malformations/complications , Central Nervous System Vascular Malformations/pathology , Rehabilitation Centers/statistics & numerical data , Spinal Cord Injuries/complications , Spinal Cord Injuries/pathology , Aged , Central Nervous System Vascular Malformations/epidemiology , Cerebral Angiography , Female , Follow-Up Studies , Humans , Magnetic Resonance Imaging/methods , Male , Middle Aged , Myelography , Retrospective Studies , Spinal Cord/pathology , Spinal Cord Injuries/epidemiology
SELECTION OF CITATIONS
SEARCH DETAIL