F W A van Asbeck

High prevalence of incontinence among young adults with spina bifida: description, prediction and problem perception

Study design:Cross-sectional study.Objectives:To study the prevalence of incontinence, problem perception and determinants of urinary and faecal incontinence in young adults with spina bifida.Setting:Nation-wide study in the Netherlands.Participants:A total of 179 of 350 invited patients participated, including 37 patients with spina bifida occulta and 142 with spina bifida aperta, of whom 119 had hydrocephalus; 41% were male and mean age was 20.4 (range 16–25 years).Methods:Data were collected from interviews, physical examination, neuropsychological tests and medical records.Results:Urinary and faecal incontinence was common in young adults with spina bifida (60.9 and 34.1%, respectively), regardless of the bladder and bowel management they used. The majority of urinary and faecal incontinent patients perceived this as a problem (69.7 and 77.0%, respectively). Spina bifida aperta, hydrocephalus and a level of lesion of L5 or above were associated with patients suffering from urinary and/or faecal incontinence. Predictors of perceiving urinary incontinence as a problem were, in addition to being incontinent, not having hydrocephalus and having a level of lesion of L5 or above. The only predictor of perceiving faecal incontinence as a problem was the frequency of incontinence.Conclusion:A majority of young adults with spina bifida suffer from urinary and faecal incontinence and most of them perceive their incontinence as a problem. Therefore, further efforts are important to improve urinary and faecal continence.

Services for spinal cord injured: availability and satisfaction

This article discusses service delivery for Spinal Cord Injured (SCI) in the Netherlands. In this wealthy country, almost everyone has access to domestic adaptations and other equipment, regardless of income and with low, or without user contributions. However, satisfaction with this system or its products is rarely examined. Subjects in this research are 318 SCI individuals between 18 and 65 years of age, living in the community at a mean time of 3.6 years after injury. Availability of accessible housing, domestic adaptations, wheelchairs and outdoor transportation is investigated. Satisfaction with available services and satisfaction with service delivery procedures is measured by self-developed questionnaires. Relationships between these satisfaction scores and measures for functional health status (SIP68) and life satisfaction (LSQ) are analyzed. The presence of domestic adaptations is high, and 78.3% said their houses were sufficiently adapted at the time of the interview. Wheelchairs were generally available and most respondents had more than one. However, many users had complaints about their wheelchairs: 35.9% about their manual wheelchairs and 47.5% about their electric wheelchairs. Public transport was rarely used, 51.1% of respondents had an adapted car. Having an adapted car was significantly related to the ability to drive independently. Satisfaction with available services was acceptable, but satisfaction with service delivery procedures was very low. Satisfaction with available services did have a significant relationship with functional health status when the influence of the type of injury was taken into account. Satisfaction with available services also had a significant relationship with life satisfaction, after the influence of functional health status was taken into account. Further research on this topic is recommended.

Demographics of the Dutch multicenter prospective cohort study 'Restoration of mobility in spinal cord injury rehabilitation'

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.

Characteristics, length of stay and functional outcome of patients with spinal cord injury in Dutch and Flemish rehabilitation centres.

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.

Care needs of persons with long-term spinal cord injury living at home in the Netherlands

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.

Occurrence and predictors of pressure ulcers during primary in-patient spinal cord injury rehabilitation

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.

Work participation among young adults with spina bifida in the Netherlands

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.

Social implications for persons 5-10 years after spinal cord injury

One hundred and seventy four persons with a spinal cord injury (SCI) were treated in the rehabilitation centre ‘De Hoogstraat’ in Utrecht, The Netherlands, between 1980 and 1985. One hundred and seventeen were available for a follow up study. Between 1990 and 1992 these 117 persons were visited and interviewed at home by a physiotherapist who worked in this centre, in order to find possible shortcomings in their rehabilitation programme and to advise accordingly on improvements. From this research project the following subjects are reported: housing, work/household, sport/hobbies, and marital status. The findings are described and compared with the literature.

Causes of death following spinal cord injury during inpatient rehabilitation and the first five years after discharge. A Dutch cohort study.

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 χ2-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.

Monitoring healing of pressure ulcers: a review of assessment instruments for use in the spinal cord unit

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.