Functional independence of persons with long-standing motor complete spinal cord injury in the Netherlands.

Context/Objective: Since life expectancy of persons with spinal cord injury (SCI) has improved, it is relevant to know whether this group is able to maintain functional abilities many years after onset of SCI. Objectives of this study were (1) to examine associations between time since injury (TSI) and functional independence in persons with long-standing SCI and (2) to explore associations between functional independence and level of injury, comorbidities, mental health, waist circumference and secondary health conditions (SHCs).Design: TSI-stratified cross-sectional study. Strata were 10-19, 20-29 and 30+ years.Setting: Community.Participants: 226 persons with long-standing SCI. Inclusion criteria: motor complete SCI; age at injury 18-35 years; TSI ≥ 10 years; current age 28-65 years; wheelchair dependency.Interventions: Not applicable.Outcome measures: The Spinal Cord Independence Measure III (SCIM) was administered by a trained research assistant. Level of injury, comorbidities, mental health, waist circumference and SHCs were assessed by a rehabilitation physician.Results: Mean TSI was 23.6 (SD 9.1) years. No significant differences in SCIM scores were found between TSI strata. SCIM scores were lower for persons with tetraplegia, autonomic dysreflexia, hypotension, more than four SHCs and a high waist circumference. In linear regression analyses, TSI nor age was associated with the SCIM total score. Only level of injury (ß = -0.7; P < .001) and waist circumference (ß = -0.1; P = .042) were independent determinants (explained variance 55%).Conclusion: We found no association between TSI and functional independence in persons with long-standing motor complete SCI. This study confirms the possible effect of overweight on functional independence.

Prevalence of hypertension and associated risk factors in people with long-term spinal cord injury living in the Netherlands.

PURPOSE: To describe the prevalence of hypertension and associated risk factors in people with long-term spinal cord injury (SCI) and to compare the prevalence of high blood pressure and/or the use of antihypertensive drugs with the prevalence in the Dutch general population. METHOD: Multicentre cross-sectional study (N = 282). Hypertension was defined as a systolic blood pressure (SBP) of ≥140 mmHg and/or a diastolic blood pressure (DBP) of ≥90 mmHg after ≥2 blood pressure measurements during ≥2 doctor visits. High blood pressure was defined as a single measurement of a SBP of ≥140 mmHg and/or a DBP of ≥90 mmHg. RESULTS: The prevalence of hypertension was 21.5%. Significant predictors were: lesion level below C8 (T1-T6: OR =6.4, T7-L5: OR =10.1), history of hypercholesterolemia (OR =4.8), longer time since injury (OR =1.1), higher age (OR =1.1). The prevalence of high blood pressure and/or the use of antihypertensive drugs was higher in men (T1-T6 lesion: 48%; T7-L5 lesion: 57%) and women (T1-T6 lesion: 48%; T7-L5 lesion: 25%) with a SCI below C8 compared to Dutch able-bodied men (31%) and women (18%). CONCLUSION: High blood pressure is common in people with SCI. Screening for hypertension during annual checkups is recommended, especially in those with a SCI below C8. Implications for Rehabilitation High blood pressure is common in people with long-term SCI living in the Netherlands and its prevalence is higher in both men and women with a spinal cord lesion level below C8 compared with the age-matched Dutch general population. It is recommended to screen for hypertension during annual checkups in people with SCI, especially in those with a higher risk of developing hypertension, e.g. those with a spinal cord lesion level below C8 and an age of ≥45 years or a time since injury of ≥20 years. When a high blood pressure is measured in people with SCI, they should receive a further assessment of the blood pressure according to the available guidelines for the general population, including ambulatory 24 h-blood pressure monitoring.

Bladder-emptying methods, neurogenic lower urinary tract dysfunction and impact on quality of life in people with long-term spinal cord injury.

OBJECTIVES: To describe bladder-emptying methods used by people with long-term spinal cord injury (SCI) and to determine usage differences in relation to time since injury, sex, lesion level and completeness of lesion. Furthermore, to evaluate the relationship between bladder-emptying methods and the impact of neurogenic lower urinary tract dysfunction (NLUTD) on quality of life (QoL). DESIGN: Cross-sectional multicenter study. SETTING: Dutch community. PARTICIPANTS: Persons dependent on wheelchairs (N = 282) with traumatic or non-traumatic SCI for ≥10 years and age at injury of 18-35 years. INTERVENTIONS: Not applicable. OUTCOME MEASURES: The International Lower Urinary Tract Function Basic SCI Data Set and the Short-Form Qualiveen (SF-Qualiveen). RESULTS: Median time since injury was 22.0 years (IQR: 16.8-30.3). Clean intermittent catheterization (CIC) was most commonly used (42.6%). Longer time since injury was associated with fewer continent urinary diversions and more transurethral catheter use. Transurethral catheter use and continent urinary diversions were more prevalent among women. Participants with tetraplegia were more likely to use reflex voiding or a suprapubic catheter, and participants with paraplegia were more likely to use CIC. Transurethral catheter users reported the highest impact of NLUTD on quality of life (SF-Qualiveen score: 1.9; SD = 0.8). Participants with a continent urinary diversion reported the lowest impact (SF-Qualiveen score: 0.9; SD = 0.6). Higher age and indwelling catheter use versus CIC were associated with a higher impact of NLUTD on QoL. CONCLUSIONS: CIC is the most common bladder-emptying method in Dutch people with long-term SCI. Clinicians should be aware of the impact of NLUTD on QoL, especially for those using an indwelling catheter.

Description of Urological Surveillance and Urologic Ultrasonography Outcomes in a Cohort of Individuals with Long-Term Spinal Cord Injury.

Background: Individuals with spinal cord injury (SCI) have an increased risk of developing urological complications. Therefore, long-term routine urological surveillance is recommended. Objective: To describe urological surveillance in individuals with long-term SCI and to determine factors associated with urologic ultrasonography (UU) outcome. Methods: Wheelchair-dependent individuals with an SCI for 10 years or more were included. A medical assessment was done in 8 participating rehabilitation centers. The International Lower Urinary Tract Function Basic SCI Data Set was used to assess bladder-emptying methods and previous surgical procedures on the urinary tract. We studied urological surveillance: whether participants had routine urological checkups (including UU) and when latest urodynamic study was performed. Latest UU (performed <1 year ago) was retrieved or, when lacking, UU was performed as part of our study. Results: Median time since injury (TSI) was 22.0 years. Overall, 39% of the 282 participants did not have routine urological checkups and 33% never had a urodynamic study performed. UU data (N = 243) revealed dilatation of the upper urinary tract (UUT) in 4.5% of the participants and urinary stones in 5.7%. Abnormal UU outcome was associated with increasing TSI, nontraumatic SCI, and previous surgical bladder or UUT stone removal. UU outcome was not associated with routine urological checkups or type of bladder-emptying method. Conclusions: Over one-third of Dutch individuals with long-term SCI did not receive routine urological surveillance. UU outcome was not associated with routine urological checkups or type of bladder-emptying method. Further research on the indication and frequency of urological surveillance is recommended.

Secondary health conditions and quality of life in persons living with spinal cord injury for at least ten years.

OBJECTIVES: To describe the prevalence of secondary health conditions among persons with long-term spinal cord injury, and the relationship between these secondary health conditions and quality of life. DESIGN: Multicentre, cross-sectional study. SUBJECTS: Individuals (n = 282) with traumatic or non-traumatic spinal cord injury for ≥ 10 years, age at injury 18-35 years, current age 28-65 years, and using a wheelchair. METHODS: Occurrence of 13 secondary health conditions was assessed during a consultation with a rehabilitation physician. Quality of life was measured with the International Spinal Cord Injury Quality of Life Basic Data Set. RESULTS: Median time since injury was 22.0 years. Median number of secondary health conditions was 4. The most prevalent secondary health conditions were: musculoskeletal pain (63.5%), oedema (38.7%), neuropathic pain (34.1%) and urinary tract infections (33.3%). Only oedema showed a significant association with increasing time since injury. Median Total Quality of Life Basic Data Set score was 7. Musculoskeletal pain, pressure ulcers, problematic spasticity and constipation showed an independent association with quality of life in multiple regression analysis, but in general, these associations were weak. CONCLUSION: Secondary health conditions are common among persons with long-term spinal cord injury and the following secondary health conditions were independently associated with lower quality of life: musculoskeletal pain, pressure ulcers, problematic spasticity, and constipation. Minimizing the impact of secondary health conditions should be a priority in the long-term care of persons with spinal cord injury.

Diagnostic accuracy of Tc-99m DMSA scintigraphy and renal ultrasonography for detecting renal scarring and relative function in patients with spinal dysraphism.

AIMS: To study additional benefits of performing Tc-99m dimercaptosuccinic acid (Tc-99m-DMSA) scintigraphy as part of the follow-up of adults with spinal dysraphism (SD), compared with ultrasonography, with regard to finding renal scarring and difference in split renal function. METHODS: Between January 2011 and April 2013 every patient visiting our specialized outpatient clinic for adults with SD was invited to undergo both renal ultrasonography and Tc-99m-DMSA scintigraphy. Outcomes of both modalities were compared, with focus on renal scarring. The relation between renal scarring and hypertension was also assessed. RESULTS: In total, 122 patients (with 242 renal units) underwent both renal scintigraphy and ultrasonography. More scars were seen on DMSA scintigraphy than on ultrasonography: 45.9% vs. 10.3% of renal units; P < 0.001. Renal scarring seen on DMSA was associated with the presence of hypertension (P = 0.049) whereas scarring seen on ultrasonography was not (P = 0.10). If ultrasonography was difficult to interpret, many more scars were missed on ultrasonography (78.9%) compared with easily interpretable ultrasonographic images (30.6%; P < 0.001). CONCLUSIONS: In adults with SD, ultrasonography is of value to diagnose dilatation and stones of the upper urinary tract; however, compared with DMSA renography, renal scars are often missed, especially when the ultrasound is difficult to interpret.

Cross-sectional study of determinants of upper and lower urinary tract outcomes in adults with spinal dysraphism--new recommendations for urodynamic followup guidelines?

PURPOSE: Although annual urodynamic study is currently recommended for all adults with spinal dysraphism, this followup might be overly intensive. Therefore, in this cross-sectional study we examine which determinants of upper and lower urinary tract outcomes are associated with relevant urodynamic findings. MATERIALS AND METHODS: All patients visiting our specialized outpatient clinic for adults with spinal dysraphism during a 26-month period underwent evaluation of the lower urinary tract by (video)urodynamic study. High end filling pressure (40 cm H2O or greater), poor compliance (less than 10 ml/cm H2O) and high detrusor leak point pressure (40 cm H2O or greater) were classified as relevant findings and together called unsafe bladder. Multivariable analysis was performed to reveal determinants of unsafe bladder (type of spinal dysraphism, being wheelchair bound, hydrocephalus, urological symptoms and renal dilatation) and diagnostic accuracy was calculated for the significant determinants. RESULTS: Of the 134 patients evaluated (median age 31.5 years) 120 underwent complete urodynamic study and were included in this study. In the multivariable model unsafe bladder was significantly associated with being wheelchair bound (OR 5.36, p=0.008). In patients without symptoms who were not wheelchair bound the negative predictive value of urodynamic study for finding an unsafe bladder was high (1.00). CONCLUSIONS: If an adult patient with spinal dysraphism is not wheelchair bound, unfavorable findings at urodynamic study are unlikely. If these patients are asymptomatic, these findings are even more unlikely. In these patients it is probably not necessary to perform urodynamic study as frequently as is currently recommended. Patients with an unsafe bladder need active surveillance and treatment when upper tract safety is threatened.

Medical and psychosocial problems in middle-aged spina bifida patients: survey among members of the Dutch patients' association.

PURPOSE: To identify physical, emotional and psychosocial issues in the older person with spina bifida (SB). METHOD: Members of the Dutch patients' association aged >25 years (n = 184) were asked to complete a questionnaire. This survey contained questions on physical and psychosocial complaints, as well as problems regarding social participation. RESULTS: A total of 61 people (33.2%) with a median age of 45 years (IQR 33.5-60.0) years responded. During the previous 5 years, 86.9% experienced new physical complaints, whereas only 13.1% remained free of new complaints. 50.8% of the persons had new bladder problems and 44.1% had bowel complaints. Older persons more often had physical complaints. New musculoskeletal problems occurred in 75.4%. Psychological problems were common (78.7%). Overall psychological problems were not associated with gender, hydrocephalus or age. Social participation was good, with 90.2% of persons taking part in some type of social activity. CONCLUSIONS: In this study, a majority of adult persons with SB reported newly arising physical and psychological problems during the previous 5 years. Given the large number and diversity of the newly emerging problems after adolescence, regular and multidisciplinary surveillance of adult persons with SB is recommended. IMPLICATIONS FOR REHABILITATION: Adults with spina bifida often disappear from follow-up, or are forced to take care of their follow-up themselves. According to a survey carried out among adult SB-patients from the general community, these persons continued to struggle with many physical and psychosocial problems. Given the high number of psychosocial problems in this sample of patients, psychosocial counseling could be beneficial during follow-up. This paper adds to the body of evidence indicating that multidisciplinary follow-up for SB-patients could be beneficial, also when patients grow beyond the age of 18 years.

Secondary health conditions in persons with spinal cord injury: a longitudinal study from one to five years post-discharge.

OBJECTIVE: To assess the occurrence of secondary health conditions and their potential risk factors in persons with spinal cord injury from 1 to 5 years after discharge from initial inpatient rehabilitation. DESIGN: Multicentre longitudinal study. SUBJECTS: A total of 139 wheelchair-dependent persons with spinal cord injury. METHODS: The occurrence of secondary health conditions and their potential risk factors were assessed in a clinical interview with a rehabilitation physician at 1 and 5 years after discharge from inpatient rehabilitation and by a telephone interview 2 years after discharge. Self-report questionnaires were used for the assessment of musculoskeletal and neuropathic pain. RESULTS: Neuropathic pain (83.7-92.1%), musculoskeletal pain (62.3-87.1%) and urinary tract infection (56.5-58.9%) were the most frequently reported secondary health conditions. The occurrence of several secondary health conditions was higher among women and individuals with a complete lesion, tetraplegia, and with a higher body mass index. CONCLUSION: Secondary health conditions are common in the first years post-discharge following spinal cord injury, and their course seems to be relatively stable. These results emphasize the number of health issues that must be considered during post-injury care of persons with spinal cord injury living in the community, and the importance of a well-coordinated interdisciplinary approach from specialized rehabilitation centres.

Paucity of evidence for urinary tract outcomes in closed spinal dysraphism: a systematic review.

OBJECTIVES: To describe the long-term upper (UUT) and lower urinary tract (LUT) outcomes in patients with closed spinal dysraphism (CSD). CSD differs from open spinal dysraphism (OSD) by its long asymptomatic course and consequent later diagnosis. The outcome of UUT and LUT function in adults with CSD is relatively unknown. PATIENTS AND METHODS: A systematic review was performed following the standards of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. An extensive search was made of PubMed and EMBASE. Included were papers on adults with any form of primary CSD that described bladder and/or kidney function. Only English and Dutch language papers were included. Excluded were papers on patients aged <18 years and patients with secondary tethered cord following childhood OSD repair. International Continence Society terminology was used to describe LUT outcomes. RESULTS: Eventually, only seven studies (90 patients) were included and none of these described renal outcomes. Five of the seven papers were on outcomes after untethering surgery during adulthood. Urological complaints were present in 54/79 (68.4%) patients. Urodynamic studies (48 patients available) revealed detrusor underactivity in 46.5% of the evaluated cases, detrusor overactivity in 32.6% and normal findings in 16.3% of the studied patients. Symptomatic improvement after surgery for tethered cord occurred in 33.3-90.0%, depending on the subgroup studied. Urodynamic improvement rates ranged from 11.1% to 54.5% (but based on three studies with only 24 patients). Success of surgery depended on the time between onset of symptoms and operation, and (sometimes) type of lesion. CONCLUSIONS: Few data are available on long-term urological outcomes in adult patients with CSD. More extensive research on follow-up, including the functional status of the UUT, is recommended. Based upon the little evidence available, we think life-long follow-up (from birth into adulthood) of those with CSD and neurogenic bladder is advisable.

Rehabilitation of patients with nontraumatic spinal cord injury in the Netherlands: etiology, length of stay, and functional outcome.

BACKGROUND: Patients with nontraumatic spinal cord injury (NTSCI) are different from patients with traumatic spinal cord injury. A better understanding of the characteristics of NTSCI and their influence on length of stay (LOS) and functional outcome might help professionals in planning rehabilitation and predicting outcomes in NTSCI. OBJECTIVE: To describe personal and injury characteristics, etiology, LOS, and functional outcome after inpatient rehabilitation in patients with NTSCI. METHODS: Retrospective single-center study including 124 patients who were discharged between 2006 and 2010 from their initial inpatient rehabilitation after onset of NTSCI. Information about personal and injury characteristics, LOS, and functional outcome was collected from medical files. Descriptive statistics were performed, and associations between etiology, LOS, and functional outcome were investigated. RESULTS: Fifty percent of participants were male, and mean age was 54.9 years (SD 13.7). Most lesions were classified as American Spinal Injury Association Impairment Scale (AIS) D (68.8%) and paraplegic (76.6%). The most frequent etiologies were degeneration (25.8%), vascular disease (21.8%), benign tumor (16.1%), and malignant tumor (15.3%). Discharge destination was usually a private residence (84.6%). Median LOS in inpatient rehabilitation was 61.0 days (interquartile range [IQR], 38.3-111.8). Median functional status score was 47.5 (IQR, 30-70) at admission and 90 (IQR, 75-100) at discharge. Etiology was a significant predictor of LOS and functional status at admission and discharge, but not of functional improvement during inpatient rehabilitation. CONCLUSION: Spinal degeneration, tumor, and vascular disease were the most common causes of NTSCI. All etiology groups improved during inpatient rehabilitation.

Wheelchair exercise capacity in spinal cord injury up to five years after discharge from inpatient rehabilitation.

OBJECTIVE: To elucidate the course and determinants of wheelchair exercise capacity in spinal cord injury up to 5 years after discharge from inpatient rehabilitation, and to describe loss to follow-up. DESIGN: Prospective cohort study, with measurements at the start and discharge from inpatient rehabilitation, 1 and 5 years after discharge. SUBJECTS: A total of 225 wheelchair-dependent persons with spinal cord injury. METHODS: Random coefficient analysis of the course and determinants of peak aerobic power output (POpeak) and peak oxygen uptake (VO2peak). RESULTS: A total of 162 participants attended 1 or more peak exercise tests and were analysed. Significant changes were found for both VO2peak and POpeak between start and 5 years after discharge, and discharge and 5 years after discharge. No significant changes were found for VO2peak and POpeak between 1 year and 5 years after discharge. Age, gender, level and completeness of lesion were determinants for level of VO2peak and age, gender, and level of lesion for level of POpeak. No significant determinants were found for the course of wheelchair exercise capacity. The 63 participants who were not analysed were older, and showed more persons with a tetraplegia. CONCLUSION: Wheelchair exercise capacity of persons with spinal cord injury stabilizes at between 1 and 5 years after discharge. The participants appear to be a positive selection of the total study group.

Urolithiasis in adult spina bifida patients: study in 260 patients and discussion of the literature.

PURPOSE: To describe incidence and risk factors of urinary tract stones in adult spina bifida (SB) patients. Although spina bifida patients have an allegedly higher risk of urinary tract stones, only two small non-English case series are available and do not provide adequate epidemiological data and analyses on risk factors. METHODS: A total of 260 adult SB patients followed in our centre for 10 years were retrospectively analysed for stone disease. Both a univariate analysis (Fisher's exact, two-sided Student's t test) and a binary logistic regression analysis were performed to identify independent risk factors for stone disease. RESULTS: Of the 260 patients, 24 (9.2 %) were identified with a history of urolithiasis. Fourteen patients (5.4 %) had bladder stones in 26 episodes. Sixteen patients (6.2 %) had upper urinary tract stones: 14 kidney stones and two ureteral stones. Lifetime incidence of both bladder stones and upper tract stones was 2.25 per 1,000 patient-years. Recurrent urinary tract infections (OR 4.34, p = 0.013) and incorporation of bowel tissue into a continent reservoir (including enterocystoplasty) (OR 4.80, p = 0.012) were independent risk factors for bladder stone disease in a multivariate model. An indwelling catheter was an independent predictor for upper tract stones (OR 5.89, p = 0.02). CONCLUSIONS: Urolithiasis, especially in the bladder, is a frequent finding in patients with SB. Bladder stones occur about 10 times more often in SB patients than in the population. In patients without risk factors, frequent ultrasound of the urinary tract is not necessary for the sole detection of stones.

Secondary health conditions in persons with a spinal cord injury for at least 10 years: design of a comprehensive long-term cross-sectional study.

PURPOSE: To describe the prevalence of secondary health conditions (SHCs) (urinary tract and bowel problems, pressure ulcers, spasticity, musculoskeletal and neuropathic pain, sexual dysfunction, respiratory and cardiovascular disorders) in persons with long-term spinal cord injury (SCI), and to explore the impact of SHCs on fitness, active lifestyle, participation and well-being. METHODS: A time since injury (TSI)-stratified cross-sectional study among 300 persons between 28- and 65-year-old with a SCI for at least 10 years. Strata of TSI are 10-19, 20-29, and 30 or more years. All eight Dutch rehabilitation centres with a SCI unit will participate. Participants will be invited for a 1-day visit to the rehabilitation centre for an aftercare check-up by the local SCI rehabilitation physician (neurological impairment, SHCs and management), physical tests by a trained research assistant (lung function, wheelchair skills, physical capacity), and they will be asked to complete a self-report questionnaire in advance. RESULTS: Not applicable. CONCLUSION: This study will provide knowledge on the health status and functioning of persons aging with SCI living in the Netherlands. This knowledge will help us to develop predictive models for the occurrence of SHCs and to formulate guidelines to improve health care for persons with long-term SCI.

Enterocystoplasty vs detrusorectomy: outcome in the adult with spina bifida.

PURPOSE: Bladder augmentation by enterocystoplasty or detrusorectomy might prevent renal damage, help achieve dryness and decrease the need for antimuscarinics. We compared the long-term outcomes of enterocystoplasty and detrusorectomy in adults with spina bifida. MATERIALS AND METHODS: A retrospective study using the hospital electronic database was performed. We identified 47 patients with spina bifida (median age at followup 26.8 years) who underwent either enterocystoplasty or detrusorectomy between 1988 and 2004. Median followup was 13.1 years in the detrusorectomy group and 15.3 years in the enterocystoplasty group. RESULTS: In the detrusorectomy group 4 patients with treatment failure were identified. All 4 patients underwent secondary enterocystoplasty. No reoperation was necessary in the enterocystoplasty group. Preoperative bladder volume was approximately 100 ml higher in the detrusorectomy group (not significant). There was a significantly greater improvement of median bladder volume in the enterocystoplasty group (increase of 300 vs 77.5 ml, p = 0.006). No differences in continence rate, antimuscarinic use or condition of the upper tract were found. CONCLUSIONS: In this series of 47 patients long-term outcomes were good after enterocystoplasty and detrusorectomy, although bladder volume exhibited a greater increase in the enterocystoplasty group. No differences were observed among the other outcomes. If preoperative bladder volume is sufficient, detrusorectomy can be considered before enterocystoplasty is done.

Upper and lower urinary tract outcomes in adult myelomeningocele patients: a systematic review.

BACKGROUND: The introduction of sophisticated treatment of bladder dysfunction and hydrocephalus allows the majority of SB patients to survive into adulthood. However, no systematic review on urological outcome in adult SB patients is available and no follow-up schemes exist. OBJECTIVES: To systematically summarize the evidence on outcome of urinary tract functioning in adult SB patients. METHODS: A literature search in PubMed and Embase databases was done. Only papers published in the last 25 years describing patients with open SB with a mean age >18 years were included. We focused on finding differences in the treatment strategies, e.g., clean intermittent catheterization and antimuscarinic drugs versus early urinary diversion, with regard to long-term renal and bladder outcomes. RESULTS: A total of 13 articles and 5 meeting abstracts on urinary tract status of adult SB patients were found describing a total of 1564 patients with a mean age of 26.1 years (range 3-74 years, with a few patients <18 years). All were retrospective cohort studies with relatively small and heterogeneous samples with inconsistent reporting of outcome; this precluded the pooling of data and meta-analysis. Total continence was achieved in 449/1192 (37.7%; range 8-85%) patients. Neurological level of the lesion and hydrocephalus were associated with incontinence. Renal function was studied in 1128 adult patients. In 290/1128 (25.7%; range 3-81.8%) patients some degree of renal damage was found and end-stage renal disease was seen in 12/958 (1.3%) patients. Detrusor-sphincter dyssynergy and detrusor-overactivity acted as adverse prognostic factors for the development of renal damage. CONCLUSIONS: These findings should outline follow-up schedules for SB patients, which do not yet exist. Since renal and bladder deterioration continues beyond adolescence, follow-up of these individuals is needed. We recommend standardization in reporting the outcome of urinary tract function in adult SB patients.

Life satisfaction in people with spinal cord injury during the first five years after discharge from inpatient rehabilitation.

PURPOSE: To describe the course of life satisfaction in persons with spinal cord injury (SCI) during the first 5 years after discharge from inpatient rehabilitation and to examine its determinants. METHODS: Multi-centre prospective cohort study with four measurements, the first at discharge from inpatient rehabilitation, the last 5 years after discharge. Data of 162 persons with SCI were analyzed. Life satisfaction was measured as the sum score of 'current life satisfaction' and 'current life satisfaction compared to life satisfaction before SCI'. Lesion characteristics, functional independence, secondary impairments, pain, social support and self-efficacy were analyzed as possible determinants of life satisfaction. Random coefficient analysis was used for the analyses. RESULTS: No significant changes in life satisfaction were found between discharge and 2 years later, however there were significant increases from two to 5 years post discharge. High functional independence, low pain, high everyday social support and high self-efficacy were significant determinants of a positive course of life satisfaction after discharge. CONCLUSIONS: Increases in life satisfaction were found in persons with SCI in the long run. High functional status, low pain, good social skills and high self-efficacy were related to high life satisfaction.

Chronic spinal cord injury pain: pharmacological and non-pharmacological treatments and treatment effectiveness.

PURPOSE: To describe pharmacological and non-pharmacological pain treatments used for chronic spinal cord injury pain (CSCIP) and current treatment effectiveness in a large Dutch population with a spinal cord injury (SCI). METHOD: Postal survey among 575 persons with SCI. The main outcome measures were the pain intensity score of the Chronic Pain Grade questionnaire, past and current pain treatments, and perceived effectiveness of current pain treatments. RESULTS: Response rate was 49% (279 persons) and 215 respondents (77.1%) had CSCIP. Most respondents with CSCIP (62.8%) reported more than one pain type, of which neuropathic pain was most frequently reported (69.3%). Of this group with CSCIP, 63.8% was currently involved in some kind of treatment, but nevertheless high levels of pain (mean 52.8 on a 0-100 scale) were reported. Massage (therapy)/relaxation (training), anticonvulsants, and non-steroidal anti-inflammatory drugs (NSAIDs) were the most often used treatments. The current treatments that were most often perceived as effective were acupuncture/magnetising, cannabis/alcohol, physiotherapy and exercise, and massage (therapy)/relaxation (training). TENS/ultrasound and antidepressants were least often perceived as effective. CONCLUSIONS: Many SCI pain treatments have been tried. Acupuncture/magnetising, cannabis/alcohol, and physiotherapy and exercise were considered most effective. Further research is needed to establish effective SCI pain treatments.

Investigation of bias due to loss of participants in a Dutch multicentre prospective spinal cord injury cohort study.

OBJECTIVE: To determine bias due to loss of participants (attrition bias) in a prospective cohort study. DESIGN: A multi-centre prospective cohort study. SUBJECTS: A total of 225 individuals with a spinal cord injury from 8 Dutch rehabilitation centres. METHODS: Participants were considered non-participants when no information was collected at the measurement one year after discharge from inpatient rehabilitation. Using bivariate tests participants and non-participants were compared regarding personal, lesion, function and functional characteristics determined at the beginning of inpatient rehabilitation and at discharge. A logistic regression was performed to determine which characteristics predict participation at one year after discharge. RESULTS: Of the participants at the start of the study, 31% (n = 69) did not perform the tests one year after discharge from inpatient rehabilitation. Variables associated with study participation one year after discharge were: higher level of education, higher well-being score at the start of rehabilitation, and a shorter length of stay in hospital and rehabilitation centre at discharge of inpatient rehabilitation. CONCLUSION: Selective attrition in the longitudinal study might have led to an over-estimation of some of the results of the measurement one year after discharge from inpatient rehabilitation.

Development of a classification of physical, occupational, and sports therapy interventions to document mobility and self-care in spinal cord injury rehabilitation.

OBJECTIVE: To describe the development of a classification for therapeutic activities in clinical spinal cord injury (SCI) rehabilitation. DESIGN: Descriptive study including a modified Delphi consensus method. SETTING: Specialized SCI units of 10 rehabilitation facilities. PARTICIPANTS: Thirty physical therapists, occupational therapists, and sports therapists from 10 Dutch and Flemish SCI centers. MAIN OUTCOME MEASURES: Identification of the levels, categories, and interventions; level of agreement among experts with (1) definitions, (2) terminology, (3) relevance, and (4) completeness of the classification (consensus considered sufficient if 80% or more agree). RESULTS: The classification comprises three levels of functioning: basic functions, basic activities, and complex activities. The three levels comprise 28 categories within which interventions are listed. Sufficient consensus was obtained for the definitions of the three levels (range, 87%-100%). Percentages of consensus for the terminology used and the completeness of the categories ranged from 75% to 100%. The perceived relevance of the categories for everyday work varied per discipline. CONCLUSION: A potentially useful classification was developed to record clinical treatment sessions in physical therapy, occupational therapy, and sports therapy for persons with SCI. The classification is currently being tested in ongoing research.