Jacinthe J. E. Adriaansen

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.

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. Implications for Rehabilitation Persons with long-term spinal cord injury may be susceptible to many types of secondary health conditions (i.e. pressure ulcers, urinary tract infections, pain and spasticity). Coordinated long-term health care is required for this population but this is currently not operational in all specialized rehabilitation centres in the Netherlands. This study aims to develop predictive models for the occurrence of secondary health conditions and to develop guidelines to improve long-term health care for persons living with a spinal cord injury in the Netherlands.

Course of social support and relationships between social support and life satisfaction in spouses of patients with stroke in the chronic phase

OBJECTIVE To describe the course of social support in spouses of patients with stroke, and to examine direct and indirect relationships between social support and life satisfaction over time. METHODS Prospective cohort study (N=180) with measurements at 2 months after discharge from inpatient rehabilitation, 1 year, and 3 years after stroke. Social support was assessed using the Social Support List-12, Life satisfaction with the Life Satisfaction Questionnaire (LiSat-9) and Caregiver strain with the Caregiver Strain Index. Random coefficient analyses was used. RESULTS Total social support and the 3 subtypes of social support decreased significantly over time. In all models, caregiver strain was associated with lower life satisfaction and social support was associated with higher life satisfaction, but there were no interaction effects between caregiver strain and social support on life satisfaction. CONCLUSION Spouses of patients with stroke experienced a decline of social support over time. Social support was positively associated with life satisfaction, regardless of the amount of caregiver strain experienced by the spouses. PRACTICE IMPLICATIONS It is important to discuss with caregivers of stroke patients the importance of maintaining their own social contacts and to facilitate this by arranging support if appropriate.

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.

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.

Outcomes of neurogenic bowel management in individuals living with a spinal cord injury for at least 10 years.

OBJECTIVE To describe bowel management and its outcomes in individuals living with a spinal cord injury (SCI) for at least 10 years. DESIGN Cross-sectional multicenter study. SETTING Dutch community. PARTICIPANTS Individuals (N=258; age range, 28-65y) who acquired their SCI between 18 and 35 years of age, who were at least 10 years post-SCI, and who used a wheelchair for their daily mobility. INTERVENTIONS Not applicable. MAIN OUTCOME MEASURES The International SCI Bowel Function Basic Data Set, the neurogenic bowel dysfunction (NBD) score, and a single item on satisfaction with bowel management. RESULTS Mean time since injury (TSI) was 24±9 years. Seventy-four percent used ≥1 conservative bowel management method, specifically digital evacuation (35%) and mini enemas (31%). Transanal irrigation (TAI) and surgical interventions were used by 11% and 8%, respectively. Perianal problems were reported by 45% of the participants. Severe NBD was present in 36% of all participants and in 40% of those using a conservative method. However, only 14% were (very) dissatisfied with their current bowel management. Dissatisfaction with bowel management was significantly associated with constipation and severe NBD. With increasing TSI, there was a nonsignificant trend observed toward a decline in dissatisfaction with bowel management and a significant decline in severe NBD. CONCLUSIONS Although satisfaction rates were high, more than a third of the participants reported severe NBD and perianal problems. Apart from severe NBD, there were no significant associations between bowel problems and TSI. Conservative methods were most often used, but some of these methods were also significantly associated with the presence of severe NBD. Longitudinal research is necessary to provide more knowledge concerning the course of NBD with increasing TSI.

Associations between disability-management self-efficacy, participation and life satisfaction in people with long-standing spinal cord injury

Objectives:To study disability-management self-efficacy (DMSE) and its correlates in a large sample of Dutch people with long-standing spinal cord injury (SCI). DMSE is the confidence that people with SCI may have in their ability to manage the consequences of their condition with respect to the various domains in their life. Research questions were: (1) What is the level of DMSE in Dutch people with long-standing SCI?; (2) Is DMSE associated with demographic and lesion characteristics?; and (3) Is DMSE associated with participation and life satisfaction if these associations are adjusted for demographic and lesion characteristics and mood?Methods:Eligible people were identified from all eight rehabilitation centers with a specialty in SCI rehabilitation in the Netherlands (N=261). Data were collected using a self-report questionnaire. DMSE was measured using the University of Washington Self-Efficacy Scale–Short Form (UW-SES-6). Correlation and linear regression analyses were used.Results:Levels of UW-SES-6 scores were largely independent of demographic and lesion characteristics. UW-SES-6 scores were bivariately moderately to strongly associated with mood (0.47), participation (0.39–0.51) and life satisfaction (0.46). In the regression analyses, UW-SES-6 scores still explained a significant amount of variance of participation (standardized β 0.31–0.33) and life satisfaction (standardized β 0.21) when controlling for demographic and lesion characteristics and mood, and explained an additional 3.2–8.1% of the variance of participation and life satisfaction.Conclusion:DMSE is a psychological resource associated with higher levels of participation and life satisfaction after SCI. The UW-SES-6 is a brief and easy to use measure of this psychological resource.

Good validity of the international spinal cord injury quality of life basic data set

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.

Wheelchair-specific fitness of persons with a long-term spinal cord injury : cross-sectional study on effects of time since injury and physical activity level

Abstract Purpose: To study the impact of time since injury (TSI) and physical activity (PA) on fitness of persons with spinal cord injury (SCI). Method: Cross-sectional study. Persons with SCI (N = 158) in three TSI strata: 10–19, 20–29 and ≥30 years after SCI and divided in an active and inactive group. Fitness [peak power output (POpeak) and peak oxygen uptake (VO2peak)] was assessed. Results: In persons with tetraplegia, no significant relationship was found between TSI and fitness after controlling for confounders, while a higher activity level was related to a higher POpeak in this group. Active people with tetraplegia also showed less decline in POpeak with an increase in TSI compared to inactive people. In persons with paraplegia, after controlling for confounders, it was shown that TSI had a negative effect on POpeak, while PA was not significantly associated with fitness in people with paraplegia. Conclusions: In people with paraplegia, fitness was significantly lower in those with a longer TSI. Persons with a long TSI might need more attention to remain fit and PA might be an important element in that respect as shown by the results of the group with a tetraplegia. Implications for Rehabilitation Wheelchair-specific fitness seems to diminish over time after paraplegia. An active lifestyle is related to wheelchair-specific fitness in persons with tetraplegia. Prevention of long-term deconditioning is very important.

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

Abstract 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.