Secondary health conditions in long-term spinal cord injury

With today’s specialized medical care, life expectancy of persons with a spinal cord injury (SCI) has considerably improved over the last decades. However, it seems that with increasing age and time since injury (TSI), more health problems arise in persons with a SCI. These “secondary health conditions (SHCs)” have been defined as: “physical or psychological health conditions that are influenced directly or indirectly by the presence of a disability or underlying physical impairment”. Examples of SHCs are bladder- and bowel disorders, pressure ulcers, spasticity, musculoskeletal and neuropathic pain and cardiovascular and respiratory problems. These SHCs hamper an active lifestyle and quality of life on top of the primary motor and sensory impairments due to the SCI. Avoiding a downward spiral, that threatens persons aging with SCI, is crucial. Unfortunately, no regular long-term rehabilitation aftercare system is currently operational in the Netherlands, nor have relationships between inactive lifestyle, de-conditioning, and SHCs been systematically evaluated in long-term SCI. In response to this lack of knowledge, the research program “Active LifestyLe Rehabilitation Interventions in aging Spinal Cord injury” (ALLRISC) was developed. ALLRISC focused on the preservation and promotion of an active lifestyle, physical fitness and health in wheelchair-dependent persons with a SCI for at least ten years.The program consisted of one cross-sectional study and three Randomized Clinical Trials. This Thesis describes a part of the results from the cross-sectional study within the ALLRISC research program. The general aim of the present Thesis was to describe the prevalence and impact of several SHCs in persons with long-term SCI and to examine possible determinants of the presence of these SHCs. The main hypothesis was that a longer duration of injury would be associated with a higher prevalence of SHCs. Persons were included if they had a traumatic or non-traumatic SCI with a time since injury of at least 10 years, an age at injury between 18 and 35 years, a current age between 28 and 65 years, and they had to be wheelchair-dependent (hand-rim propelled or electric), at least for longer distances (>500 m). Persons were excluded if they had insufficient mastery of the Dutch language to respond to an oral interview. Participants were invited for a one-day visit to one the eight participating rehabilitation centres with a speciality in SCI rehabilitation. The visit included an extensive medical assessment and physical examination performed by a rehabilitation physician and an oral interview and several physical tests performed by a research assistant. Two weeks before the visit to the rehabilitation centre, participants were asked to complete a self-report questionnaire. This Thesis provides more knowledge on the health status and functioning of persons aging with SCI living in the Netherlands and helps clinicians to formulate requirements and guidelines for a lifespan covering rehabilitation aftercare system, thereby preventing and reducing the impact of SHCs

Rasch analysis of the University of Washington Self-Efficacy Scale short-form (UW-SES-6) in people with long-standing spinal cord injury

Study design Cross-sectional psychometric study. Objectives The University of Washington Self-Efficacy Scale (UW-SES) is a measure of self-efficacy regarding managing challenges related to multiple sclerosis or spinal cord injury (SCI) that can be used across disabling conditions. The objective of this study was to examine the psychometric properties of its short form, the UW-SES-6, using the Rasch model. Setting Community, The Netherlands. Methods Secondary analysis of data from the ALLRISC study. Participants were 261 individuals with a time since onset of SCI (TSI) for at least 10 years, 18-35 at the onset of SCI, and used a wheelchair in everyday life. Rasch analyses were conducted to examine stochastic ordering (fit), unidimensionality, local dependency, reliability, response scale structure, targeting, and item bias. Results Median age was 47.8 years (Inter-Quartile Range (IQR) 41.9-55), median TSI was 22 years (IQR 16.8-30.3), 73.6% were male, 90.4% had a traumatic SCI, 39.8% had tetraplegia, and 81.6% had motor complete SCI. After merging the middle three response categories of item 4, the UW-SES-6 showed satisfactory item fit without local dependence. The PSI was high (0.87). Comparison of the person and item threshold distributions showed satisfactory targeting of the UW-SES-6 to the study group. No differential item functioning was seen with respect to sex, age, level of education, level and completeness of lesion, and TSI. Conclusions This study showed the UW-SES-6 to be a scale with sound psychometric properties that can be used as a quick and easy self-report measure of self-efficacy in people with SCI

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 beta 0.31-0.33) and life satisfaction (standardized beta 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

Impact of health problems secondary to SCI one and five years after first inpatient rehabilitation

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 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

Relationships between type of pain and work participation in people with long-standing spinal cord injury: results from a cross-sectional study

STUDY DESIGN: Multicentre, cross-sectional study. OBJECTIVES: To describe the relationships between the presence of (different types of) pain and participation in paid work in people with long-standing spinal cord injury (SCI). Furthermore, the associations of pain-related work limitations, age, gender, relationship, education, lesion level, and time since injury (TSI) with work participation (WP) were investigated. SETTING: The Netherlands. METHODS: Individuals (n = 265) with SCI for ≥ 10 years were included. Data were collected through a structured consultation with a rehabilitation physician and self-report questionnaire. Descriptive statistics and logistic regression analysis were performed. RESULTS: Median age of participants was 47.9 years, median time since injury was 22 years, 73% were male, 69% had complete SCI and 59% had paraplegia, 50% had paid work, 63% reported musculoskeletal pain, 49% reported neuropathic pain, and 31% reported other pain. Self-reported pain-related work limitations were significantly (V = 0.26 and V = 0.27) related to WP. In bivariable logistic regression analyses, no statistically significant relationships between type of pain and WP were observed. Younger age (OR=0.96), male gender (OR=0.52), a stable relationship (OR = 1.70), and shorter time since SCI (OR = 0.97) were significantly associated with a higher chance of being employed. Multivariable analysis confirmed these findings and in addition showed a higher level of education to be positively related with WP. CONCLUSION: Age, gender, relationship, education, TSI and self-reported work limitations showed a relationship with WP. Different types of pain were unrelated to WP. SPONSORSHIP: Fonds NutsOHRA through the Dutch Organization for Health Research and Development (ZonMw), Project number 89000006