Explore the vast range of titles available.

Background Quality of life (QoL) in persons with spinal cord injury (SCI) has been found to differ across countries. However, comparability of measurement results between countries depends on the cross-cultural validity of the applied instruments. The study examined the metric quality and cross-cultural validity of the Satisfaction with Life Scale (SWLS), the Life Satisfaction Questionnaire (LISAT-9), the Personal Well-Being Index (PWI) and the 5-item World Health Organization Quality of Life Assessment (WHOQoL-5) across six countries in a sample of persons with spinal cord injury (SCI). Methods A cross-sectional multi-centre study was conducted and the data of 243 out-patients with SCI from study centers in Australia, Brazil, Canada, Israel, South Africa, and the United States were analyzed using Rasch-based methods. Results The analyses showed high reliability for all 4 instruments (person reliability index .78-.92). Unidimensionality of measurement was supported for the WHOQoL-5 (Chi 2 = 16.43, df = 10, p = .088), partially supported for the PWI (Chi 2 = 15.62, df = 16, p = .480), but rejected for the LISAT-9 (Chi 2 = 50.60, df = 18, p = .000) and the SWLS (Chi 2 = 78.54, df = 10, p = .000) based on overall and item-wise Chi 2 tests, principal components analyses and independent t-tests. The response scales showed the expected ordering for the WHOQoL-5 and the PWI, but not for the other two instruments. Using differential item functioning (DIF) analyses potential cross-country bias was found in two items of the SWLS and the WHOQoL-5, three items of the LISAT-9 and four items of the PWI. However, applying Rasch-based statistical methods, especially subtest analyses, it was possible to identify optimal strategies to enhance the metric properties and the cross-country equivalence of the instruments post-hoc. Following the post-hoc procedures the WHOQOL-5 and the PWI worked in a consistent and expected way in all countries. Conclusions QoL assessment using the summary scores of the WHOQOL-5 and the PWI appeared cross-culturally valid in persons with SCI. In contrast, summary scores of the LISAT-9 and the SWLS have to be interpreted with caution. The findings of the current study can be especially helpful to select instruments for international research projects in SCI.

Background Amyotrophic lateral sclerosis (ALS) is a fatal progressive neurodegenerative disorder affecting motor neurons in the spinal cord, brainstem and motor cortex, leading to muscle weakness. Muscle weakness may result in the avoidance of physical activity, which exacerbates disuse weakness and cardiovascular deconditioning. The impact of the grave prognosis may result in depressive symptoms and hopelessness. Since there is no cure for ALS, optimal treatment is based on symptom management and preservation of quality of life (QoL), provided in a multidisciplinary setting. Two distinctly different therapeutic interventions may be effective to improve or preserve daily functioning and QoL at the highest achievable level: aerobic exercise therapy (AET) to maintain or enhance functional capacity and cognitive behavioural therapy (CBT) to improve coping style and cognitions in patients with ALS. However, evidence to support either approach is still insufficient, and the underlying mechanisms of the approaches remain poorly understood. The primary aim of the FACTS-2-ALS trial is to study the effects of AET and CBT, in addition to usual care, compared to usual care alone, on functioning and QoL in patients with ALS. Methods / Design A multicentre, single-blinded, randomized controlled trial with a postponed information model will be conducted. A sample of 120 patients with ALS (1 month post diagnosis) will be recruited from 3 university hospitals and 1 rehabilitation centre. Patients will be randomized to one of three groups i.e. (1) AET + usual care, (2) CBT + usual care, (3) Usual care. AET consists of a 16-week aerobic exercise programme, on 3 days a week. CBT consists of individual psychological support of patients in 5 to 10 sessions over a 16-week period. QoL, functioning and secondary outcome measures will be assessed at baseline, immediately post intervention and at 3- and 6-months follow-up. Discussion The FACTS-2-ALS study is the first theory-based randomized controlled trial to evaluate the effects, and the maintenance of effects, of AET and CBT on functioning and QoL in patients with ALS. The results of this study are expected to generate new evidence for the effect of multidisciplinary care of persons with ALS. Trial registration Dutch Trial Register NTR1616 .

Background Most people with a spinal cord injury rate neuropathic pain as one of the most difficult problems to manage and there are no medical treatments that provide satisfactory pain relief in most people. Furthermore, psychosocial factors have been considered in the maintenance and aggravation of neuropathic spinal cord injury pain. Psychological interventions to support people with spinal cord injury to deal with neuropathic pain, however, are sparse. The primary aim of the CONECSI (COping with NEuropathiC Spinal cord Injury pain) trial is to evaluate the effects of a multidisciplinary cognitive behavioural treatment programme on pain intensity and pain-related disability, and secondary on mood, participation in activities, and life satisfaction. Methods/Design CONECSI is a multicentre randomised controlled trial. A sample of 60 persons with chronic neuropathic spinal cord injury pain will be recruited from four rehabilitation centres and randomised to an intervention group or a waiting list control group. The control group will be invited for the programme six months after the intervention group. Main inclusion criteria are: having chronic (> 6 months) neuropathic spinal cord injury pain as the worst pain complaint and rating the pain intensity in the last week as 40 or more on a 0-100 scale. The intervention consists of educational, cognitive, and behavioural elements and encompasses 11 sessions over a 3-month period. Each meeting will be supervised by a local psychologist and physical therapist. Measurements will be perfomed before starting the programme/entering the control group, and at 3, 6, 9, and 12 months. Primary outcomes are pain intensity and pain-related disability (Chronic Pain Grade questionnaire). Secondary outcomes are mood (Hospital Anxiety and Depression Scale), participation in activities (Utrecht Activities List), and life satisfaction (Life Satisfaction Questionnaire). Pain coping and pain cognitions will be assessed with three questionnaires (Coping Strategy Questionnaire, Pain Coping Inventory, and Pain Cognition List). Discussion The CONECSI trial will reveal the effects of a multidisciplinary cognitive behavioural programme for people with chronic neuropathic spinal cord injury pain. This intervention is expected to contribute to the rehabilitation treatment possibilities for this population. Trial Registration Dutch Trial Register NTR1580.

We aimed to describe labor market participation (LMP) of persons with spinal cord injury (SCI) in Switzerland, to examine potential determinants of LMP, and to compare LMP between SCI and the general population. We analyzed data from 1458 participants of employable age from the cross-sectional community survey of the Swiss Spinal Cord Injury Cohort Study. Data on LMP of the Swiss general population were obtained from the Swiss Federal Statistical Office. Factors associated with employment status as well as the amount of work performed in terms of full-time equivalent (FTE) were examined with regression techniques. 53.4% of the participants were employed at the time of the study. Adjusted odds of being employed were increased for males (OR = 1.73, 95% CI 1.33-2.25) and participants with paraplegia (OR = 1.78, 95% CI 1.40-2.27). The likelihood of being employed showed a significant concave relationship with age, peaking at age 40. The relation of LMP with education was s-shaped, while LMP was linearly related to time since injury. On average, employment rates were 30% lower than in the general population. Males with tetraplegia aged between 40 and 54 showed the greatest difference. From the 771 employed persons, the majority (81.7%) worked part-time with a median of 50% FTE (IRQ: 40%-80%). Men, those with younger age, higher education, incomplete lesions, and non-traumatic etiology showed significantly increased odds of working more hours per week. Significantly more people worked part-time than in the general population with the greatest difference found for males with tetraplegia aged between 40 and 54. LMP of persons with SCI is comparatively high in Switzerland. LMP after SCI is, however, considerably lower than in the general population. Future research needs to show whether the reduced LMP in SCI reflects individual capacity adjustment, contextual constraints on higher LMP or both.

Background and purposeThe Stroke Specific Quality of Life Scale (SS-QoL) is a well validated measure of health related quality of life in patients with stroke, but with 49 items its length is a disadvantage. A short version of the SS-QoL was developed and tested here.MethodsSecondary analyses of three different studies. The short version was developed using data from 141 patients with aneurysmal subarachnoid haemorrhage (SAH) and tested on data from independent samples of 97 patients with SAH and 105 patients with ischaemic stroke or intracerebral haemorrhage. The item with the highest item domain correlation from each of the SS-QoL domains was selected to obtain a 12 item SS-QoL (SS-QoL-12) with a total score and physical and psychosocial subscores. Criterion validity of the SS-QoL-12 scores was tested in each sample with the original SS-QoL as reference.ResultsAll three scores of the SS-QoL-12 showed good internal consistency (Cronbach's alpha 0.77–0.89). The SS-Qol-12 scores predicted 88–95% of the variance of the original SS-QoL. Mean differences between the SS-QoL-12 and SS-QoL and their 95% CI were generally within 0.1 points on a 1–5 scale. The limits of agreement were generally within 0.4 points.ConclusionThe SS-QoL-12 has good criterion validity for all subsets of stroke. Because it consists of only 12 questions, this short form will be easy to use in research and clinical settings.

Objective: To describe and compare the content, feasibility, outcome parameters, and clinimetric properties of the manual wheelchair skills tests reported in the literature. Design: A systematic literature search was conducted in MEDLINE, EMBASE, PsychINFO and Current Contents. Tests were selected if they were observational tests, designed for subjects using hand-rim wheelchairs and were intended to assess wheelchair skill performance at the activity level. Results: The search resulted in 34 papers, in which 24 different wheelchair skills tests were described. The skill most frequently included was wheelchair propulsion, consecutively followed by transferring, negotiating kerbs, ascending slopes, traversing tracks, sprinting and performing a wheelie. The three most frequently used outcome parameters were task performance time, independency of task performance, and physical strain during skill performance. Sensitivity to change was evaluated in three tests, validity in 10 tests, and reliability in nine tests. Conclusions: Many tests are applied to measure wheelchair skill performance using different tasks and outcome measures. This makes it difficult to compare study results. Consensus among researchers as to which skills must be included as well as to standardization of the use of measurement instruments will reduce this problem and will additionally lead to a better insight in the quality of tests.

Objective: To compare the psychometric properties of the Caregiver Strain Index Expanded with those of the original Caregiver Strain Index among partners of stroke patients. Design and subjects: Cross-sectional validation study among 173 caregivers of stroke patients six months post-stroke. Main measures: Outcome measure: Caregiver Strain Index Expanded. Reference measures: Hospital Anxiety and Depression Scale, two questions on life satisfaction, Barthel Index and Montreal Cognitive Assessment. Additionally, National Institutes of Health Stroke Scale. Results: Neither the Caregiver Strain Index Expanded nor the original Caregiver Strain Index showed floor or ceiling effects. The sum score of the positive items showed a ceiling effect and was skewed to the right (2.20). Principal component analysis revealed no clear underlying item clustering. Alpha values of the Caregiver Strain Index Expanded and the original Caregiver Strain Index were good (0.82 and 0.83), but the alpha value of the positive subscale of the Caregiver Strain Index Expanded was too low (0.51). Convergent validity was confirmed for the Caregiver Strain Index Expanded, the original Caregiver Strain Index and the positive subscale. The Caregiver Strain Index Expanded and the original Caregiver Strain Index showed nearly identical correlations with the reference measures. Negative caregiving experiences were more strongly related to partners’ mood and life satisfaction than positive caregiving experiences. In the regression analyses, the positive subscale showed little added value in predicting partners’ mood and life satisfaction. Conclusion: The addition of five positively phrased items does not improve the psychometric properties of the Caregiver Strain Index.

Over the last decade, the International Spinal Cord Injury Data Sets project developed a number of International Spinal Cord Injury Data Sets (ISCIDS) that can be used to collect standardized information on patients with SCI. The aim of this article is to describe the process of translating the ISCIDS into Dutch and reaching consensus on a Dutch National SCI Data Set (NDD). The interrater reliability of the NDD and implementation of the NDD at eight rehabilitation centers with a specialty in rehabilitation after SCI in the Netherlands are described. NDD was implemented successfully at all eight centers. Some adaptations were made to the ISCIDS, especially to the core data set. The reliability coefficients of the NDD items were at least sufficient (mean kappa per data set ranged between .68 and .91), and mean agreement per data set ranged from 66% to 97%. Experiences from the participating centers were mainly positive as well. The main obstacle for use was thought to be the absence of a link between the local patient files and the national database, which necessitates double data entry. Although the results on interrater reliability are based on a small sample size and the assessment situation is different from the normal clinical situation, this study showed the NDD to be a useful instrument to collect standardized information on patients with SCI in the Netherlands. In the future, a connection between systems or another way to centrally collect the data is recommended to prevent double data entry and to guarantee continuation of administration of the NDD.

Background: Employment rates among people with spinal cord injury or spinal cord disease (SCI/D) show considerable variation across countries. One factor to explain this variation is differences in vocational rehabilitation (VR) systems. International comparative studies on VR however are nonexistent. Objectives: To describe and compare VR systems and practices and barriers for return to work in the rehabilitation of persons with SCI/D in multiple countries. Methods: A survey including clinical case examples was developed and completed by medical and VR experts from SCI/D rehabilitation centers in seven countries between April and August 2017. Results: Location (rehabilitation center vs community), timing (around admission, toward discharge, or after discharge from clinical rehabilitation), and funding (eg, insurance, rehabilitation center, employer, or community) of VR practices differ. Social security services vary greatly. The age and preinjury occupation of the patient influences the content of VR in some countries. Barriers encountered during VR were similar. No participant mentioned lack of interest in VR among team members as a barrier, but all mentioned lack of education of the team on VR as a barrier. Other frequently mentioned barriers were fatigue of the patient (86%), lack of confidence of the patient in his/her ability to work (86%), a gap in the team's knowledge of business/legal aspects (86%), and inadequate transportation/accessibility (86%). Conclusion: VR systems and practices, but not barriers, differ among centers. The variability in VR systems and social security services should be considered when comparing VR study results.