OBJECTIVES:To examine (1) the course of life satisfaction in individuals with spinal cord injury (SCI) from admission to inpatient rehabilitation to 4 years after discharge and (2) the associations between psychological factors and this course of life satisfaction. DESIGN:Prospective longitudinal cohort study. SETTING:Rehabilitation center and community. PARTICIPANTS:This study includes 266 individuals with recent-onset SCI. INTERVENTIONS:Not applicable. MAIN OUTCOME MEASURES:Life satisfaction was assessed using the 2-item Life Satisfaction Scale (range, 2-13) at 9 time points. Patient characteristics, psychological resources (general self-efficacy, disability management self-efficacy, resilience, neuroticism, and meaning in life), coping, and cognitive appraisals were assessed at admission. Multilevel regression analyses were performed. RESULTS:The mean age of the participants was 55.8 years (SD, 15.2); 47% had paraplegia, 50% had traumatic SCI, and 77% had incomplete SCI. Median duration of inpatient rehabilitation was 11 weeks. Life satisfaction gradually increased from 5.3 (SD, 2.3) at admission to 7.2 (SD, 2.1) 4 years after discharge, with significant increases in the first 4 weeks (Δ=0.8; SD=0.6), and between 1 and 4 years after discharge (Δ=.4; SD=.7). In the final regression model, younger age, Dutch nationality, higher education level, higher disability management self-efficacy, and lower threatening appraisals were independent predictors of a more positive course of life satisfaction. CONCLUSION:Life satisfaction in individuals with SCI increased significantly over time. Results from this study suggest that long-term life satisfaction could be positively influenced by modifying low self-efficacy and high threatening appraisals during inpatient rehabilitation.

BACKGROUND:The aim of this article is to study inclusion and recognition experienced amongst people with a Spinal Cord Injury (SCI) in Norway, The Netherlands, and Australia. This is approached both from the perspectives of an interest in the impact of mobility limitations versus social attitudes, and from a consideration of differences between societies. METHODS:The data derive from the core questionnaire of International Spinal Cord Injury Community Survey with extended national modules on the attitudes and values of respondents from Norway, The Netherlands, and Australia. The data gathered in 2017-18 include 2,450 participants aged 18 years or older. The data are analysed and presented with descriptive statistics and OLS regression analyses. In order to explore our main questions, we run regression controlling for country effects in addition exploring within country effects. RESULTS:Mobility limitations are a substantially weaker predictor of self-perceived inclusion and recognition than experiences of negative attitudes towards disabled people. Stereotypical attitudes and norms in society are shown to have various impacts on inclusion in the three countries. The Norwegian respondents report overall better results on inclusion and recognition than respondents in Australia and The Netherlands, illustrating the importance of national contexts. CONCLUSIONS:Challenges associated with inclusion, recognition, and respect after SCI need to be defined in a language broader than mobility limitations and stereotypical attitudes towards people with an SCI. The main road to both inclusion and recognition in society is primarily linked to job and educational status, in addition to family and friends. The results are of particular interest as measures to support reintegration into society, including a strengthening of labour market integration programs.

Consensus exercise, narrative review. To create an International Spinal Cord Injury Psychological Functioning Basic Data Set (PSYCHBDS). International working group. Online meetings and email communications throughout 2020-2022. The authors reviewed measures used by SCI rehabilitation psychologists and reported in the literature. Selected measures and their psychometric properties were described. Consensus was reached on the measures and other data elements to include in the PSYCHBDS. The draft-PSYCHBDS was further reviewed by members of the International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, individual reviewers and societies, and posted on the ASIA and ISCoS websites for 1 month to elicit comments before final approval by ASIA and ISCoS. The group agreed to restrict the scope of the PSYCHBDS to the domains of anxiety and depressed mood and to use the 2-item versions of the Patient Health Questionnaire (PHQ) and the Generalized Anxiety Disorder (GAD). The PSYCHBDS consists of six standard and three optional data elements: date of data collection, professional background of data collector (optional), presence of psychological disorders before the onset of SCI, administration mode, PHQ-2 score, PHQ-9 score (optional), GAD-2 score, GAD-7 score (optional), and therapy for current psychological disorders. A data collection form and scoring instructions were developed. An international working group of experts achieved consensus on a data set to collect basic information on psychological factors and recommends its use in SCI/D rehabilitation and research.

STUDY DESIGN:Prospective cohort study. OBJECTIVES:To describe barriers to admission to and discharge from an inpatient rehabilitation unit for patients with newly acquired spinal cord injury or disease (SCI/D) and to identify modifiable factors whereby patient flow can be optimized. SETTING:Netherlands. METHODS:In-patients with newly acquired SCI/D referred to a rehabilitation centre in the Netherlands between December 2018 and December 2019 were included. Demographic, clinical characteristics and information about waiting days and causes of delay were recorded. Descriptive analysis was used. RESULTS:In total, 105 patients were included; 33 patients (31%) were female, mean age was 59 years, 60% had a non-traumatic SCI/D, 42% of the SCI/D were tetraplegia and 62% were AIS D at referral. No significant differences in demographic or clinical characteristics were found between patients with and without a barrier to admission. Most common admission barriers were bed availability and capacity of nursing and other health staff. The most frequent discharge barriers were delay in care approval, lack of availability of nursing home places and waiting for home modifications. CONCLUSION:Most frequent admission barriers were availability of beds and staffing capacity; most discharge barriers were problems with home modifications, waiting for care approval or a nursing home place. Recommendations for reducing these barriers are recognizing a potential problem at an early stage, timely communication with patient and/or family about options for discharge, while simultaneously initiating a home modification plan and exploring temporary accommodation options.

Study designInternational Classification of Functioning, Disability and Health (ICF) linking study.ObjectiveAnalyze cognitive interview data using the ICF as an analytic framework, to examine aspects of social life relevant to quality of life (QoL) according to people with spinal cord injury or disease (SCI/D). This study builds upon results of an international study about the cross-cultural validity of the International SCI QoL Basic Data Set (QoL-BDS).SettingFour specialized outpatient clinics in SCI/D rehabilitation, from the US, Brazil and Australia.MethodsAnalysis of qualitative data from 39 cognitive interviews with SCI/D patients at least one year post onset. Participants were asked to define their concept of QoL, overall life satisfaction, physical health and psychological health, and other relevant matters. Four independent researchers coded text fragments related to the items, and fragments were linked to ICF chapters d6-d9, following established linking rules.ResultsThe proportion of text referring to social life was 35.8% (definition QoL), 24.9% (QoL life as whole), 6.0% (physical health) and 34.9% (psychological health). The most frequent ICF categories were d760 Family relationships, d770 Intimate relationships and d920 Recreation and leisure. Most frequent responded social topics to the 'other issues' item were d770 Intimate relationships, d760 Formal relationships, and d870 Economic self-sufficiency.ConclusionThe importance of social life aspects to the QoL was highlighted based on responses of SCI/D patients, clearly demonstrated through the ICF linking process. Adding a satisfaction with social life item to the QoL-BDS has made this instrument a more comprehensive measure.

CONTEXT/OBJECTIVE:Chronic pain is a common secondary condition in spinal cord injury (SCI). Pharmacological interventions to reduce pain are associated with side effects. The reported effects of non-pharmacological treatments are unclear. This study aims to examine the self-reported presence and type of pain, and the use, effectiveness and side effects of non-pharmacological treatments for pain. DESIGN:Cross-sectional survey regarding SCI-related pain and non-pharmacological treatments. SETTING:Community, the Netherlands. PARTICIPANTS:Outpatients with SCI from two rehabilitation centers. INTERVENTIONS:Not applicable. OUTCOME MEASURES:Self-reported presence and type of pain, use, effectiveness and side effects of non-pharmacological treatments. RESULTS:A total of 371 patients (41.5%) returned the questionnaire. Median time since onset of SCI was 7 years. Pain following SCI was reported by 262 patients (70.6%). Neuropathic pain was reported most often (74.4%), followed by musculoskeletal pain (51.5%). Of patients with pain, 204 (77.9%) reported past or current use of non-pharmacological treatments. Non-pharmacological treatments used most were physiotherapy (67.6%), physical exercise (44.7%) and massage (22.5%). Of patients using non-pharmacological treatments, 152 patients (74.5%) reported the effect of their treatment. Most treatments for which the effect was reported, were described as moderately effective. Most side effects were reported for cannabis. CONCLUSION:Patients with SCI experiencing pain often use non-pharmacological treatments. Most treatments were described as moderately effective. Research on specific non-pharmacological treatments and different types of pain separately is needed to further determine the effectiveness of non-pharmacological treatments.

Pain is highly prevalent in spinal cord injury (SCI) and a key determinant of quality of life (QoL). This is the first study to examine reciprocal associations between pain and QoL in patients undergoing their first inpatient rehabilitation after SCI. Longitudinal data, with three measurement time points (1 month and 3 months after SCI onset, and at discharge from inpatient rehabilitation) from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study. Participants were 381 individuals aged ≥ 16 years with a newly diagnosed traumatic or non-traumatic SCI. 75.1

To evaluate feasibility, internal consistency, inter-rater reliability, and prospective validity of AO Spine CROST (Clinician Reported Outcome Spine Trauma) in the clinical setting. Patients were included from four trauma centers. Two surgeons with substantial amount of experience in spine trauma care were included from each center. Two separate questionnaires were administered at baseline, 6-months and 1-year: one to surgeons (mainly CROST) and another to patients (AO Spine PROST—Patient Reported Outcome Spine Trauma). Descriptive statistics were used to analyze patient characteristics and feasibility, Cronbach’s α for internal consistency. Inter-rater reliability through exact agreement, Kappa statistics and Intraclass Correlation Coefficient (ICC). Prospective analysis, and relationships between CROST and PROST were explored through descriptive statistics and Spearman correlations. In total, 92 patients were included. CROST showed excellent feasibility results. Internal consistency (α = 0.58–0.70) and reliability (ICC = 0.52 and 0.55) were moderate. Mean total scores between surgeons only differed 0.2–0.9 with exact agreement 48.9–57.6

BackgroundWomen appear to have a higher risk for long term restrictions in participation than men. This gender difference is poorly understood, as solely biomedical factors have been examined to date.ObjectivesThe aims of this study are (1) to map gender differences in participation outcome one year after stroke, and (2) to identify demographic, stroke-related, or psychological predictors of participation for women and men separately.MethodsA total of 326 patients (mean age 66.5 +/- 12.4y, 35.0% women) completed the restriction and satisfaction subscales of the Utrecht Scale of Evaluation of Rehabilitation-Participation (USER-P) at one year after stroke. Bivariate and multiple linear regression analyses were performed.ResultsWomen reported worse scores for restrictions in participation compared to men (median 75.4 versus 87.9 respectively, p = 0.001), especially in physical activities such as daytrips and going out. Satisfaction with participation was similar between women and men. Worse cognitive functioning (beta = 0.17) was associated with more restrictions in participation in men only, other predictors of restrictions in participation were similar between women and men. The presence of depressive symptoms (beta = -0.49) was associated with worse satisfaction with participation in men, whereas an increased stroke severity (beta = -0.29) and the presence of maladaptive psychological factors (beta = -0.36) were associated with worse satisfaction with participation in women.ConclusionsWomen experience more restrictions in participation compared to men one year after stroke. Taking into account gender-specific predictors of participation in stroke aftercare is important, as different biopsychosocial factors contribute to problems in participation across women and men.

Background Patient Reported Outcomes Measures (PROMs) are being used increasingly to measure health problems in stroke clinical practice. However, the implementation of these PROMs in routine stroke care is still in its infancy. To understand the value of PROMs used in ischemic stroke care, we explored the patients' experience with PROMs and with the consultation at routine post-discharge follow-up after stroke.Methods In this prospective mixed methods study, patients with ischemic stroke completed an evaluation questionnaire about the use of PROMs and about their consultation in two Dutch hospitals. Additionally, telephone interviews were held to gain in-depth information about their experience with PROMs.Results In total, 63 patients completed the evaluation questionnaire of which 10 patients were also interviewed. Most patients (82.2-96.6%) found completing the PROMs to be feasible and relevant. Half the patients (49.2-51.6%) considered the PROMs useful for the consultation and most patients (87.3-96.8%) reported the consultation as a positive experience. Completing the PROMs provided 51.6% of the patients with insight into their stroke-related problems. Almost 75% of the patients found the PROMs useful in giving the healthcare provider greater insight, and 60% reported discussing the PROM results during the consultation. Interviewed patients reported the added value of PROMs, particularly when arranging further care, in gaining a broader insight into the problems, and in ensuring all important topics were discussed during the consultation.Conclusions Completing PROMs appears to be feasible for patients with stroke attending post-discharge consultation; the vast majority of patients experienced added value for themselves or the healthcare provider. We recommend that healthcare providers discuss the PROM results with their patients to improve the value of PROMs for the patient. This could also improve the willingness to complete PROMs in the future.

BACKGROUND:Work participation is related to a better quality of life (QoL) for people with spinal cord injury (SCI), however, the specific work characteristics that are related to QoL in people with SCI are largely unknown. OBJECTIVES:To investigate which work characteristics are related to QoL in people with SCI. METHODS:Cross-sectional survey of people with SCI in the Netherlands. The survey consisted of demographic, SCI-related, and work-related items. Work control was measured with the short Job Content Questionnaire and work stress with the effort-reward imbalance (ERI). People of working age with at least 1 h of paid work per week were included. Hierarchical regression analysis was performed to examine the contribution of work characteristics to QoL while controlling for potential clinical and demographic confounders. RESULTS:The study included 169 persons with SCI (74.6 % male, 47.8 ± 9.3 years, time since injury 18.9 ± 11.1 years). The final hierarchical regression model explained 31 % of the variance in QoL. The number of SCI-related health complications contributed the strongest to QoL (ß = -.36), followed by work hours (β = .24), and work stress (β = .24). However, work control did not contribute significantly to QoL in our final model. CONCLUSION:Work hours and work stress contributed to QoL in people with SCI, but the number of SCI-related health complications was the strongest contributor. Future research and vocational rehabilitation should be directed to both medical and work-related variables to enhance the QoL of working people with SCI.

Is it the case that social trust is significantly different for people with a disability compared to people without a disability? Or is it the case that disabled people's perception of social trust is country-specific and/or socio-demographic specific? This article analyses how people with spinal cord injuries (SCI) compare with the general population’s perceptions of social trust in Norway, The Netherlands, and South Africa. The study is based on survey data for people with an SCI and the general population. Contrary to our expectations, we find that people with an SCI tend to have a social trust on a par with or somewhat higher than the general population. The low levels of social trust in South Africa are striking compared to levels in Norway and The Netherlands. Those with higher education and those having paid work show higher levels of trust than those who are less educated or those who are unemployed; women have somewhat higher levels of trust than men, and that the mean level of social trust increases with each age group. The findings illustrate a need for more critical empirically oriented research on social trust as well the value of exploring the research object beyond conventional understandings.

Study design: Secondary analysis of cross-sectional data from the ALLRISC cohort study. Objectives: To investigate the prevalence of obesity and its association with time since injury (TSI) and physical activity (PA) in wheelchair users with long-standing (TSI > 10 years) spinal cord injury (SCI). Setting: Community, The Netherlands. Methods: Wheelchair users with SCI (N = 282) in TSI strata (10-19, 20-29, and >= 30 years) and divided in meeting SCI-specific exercise guidelines or not. Waist circumference (WC) and body mass index (BMI) were assessed. Participants were classified as being obese (WC > 102 cm for men, WC > 88 cm for women; BMI >= 25 kg/m(2)) or not. Logistic regression analyses were performed to investigate the associations between obesity and TSI and PA. Results: Almost half of the participants (45-47%) were classified as obese. TSI was significantly associated with obesity, the odds of being obese were 1.4 higher when having a 10 years longer TSI. Furthermore, the odds of being obese were 2.0 lower for participants who were meeting the exercise guidelines. Conclusions: The prevalence of obesity is high in people with long-standing SCI. Those with a longer TSI and individuals who do not meet the exercise guidelines are more likely to be obese and need to be targeted for weight management interventions.

Study design Retrospective analysis of medical records. Objective To assess personality traits in persons with spinal cord injury (SCI) and compare these with the general population group. Moreover, to explore associations between personality traits and depressive and anxiety symptoms among persons with SCI in first inpatient rehabilitation. Setting Specialized rehabilitation center in The Netherlands. Methods Data were used from a routine psychological screening, administered in the first weeks of admission ( N = 67). Measures included the Hospital Anxiety and Depression Scale and the Dutch Personality Questionnaire, which includes subscales measuring neuroticism, social inadequacy, rigidity, hostility, egoism, dominance, and self-esteem. Correlational and regression analyses were conducted. Results Mean age of the participants was 58 (SD 17) years. The majority (63%) were male, and had a low lesion (57%). The participants scored significantly higher on dominance and lower on social inadequacy, hostility, and egoism in comparison with the general population. In the bivariate regression analyses, high neuroticism ( β = 0.42 and β = 0.53) and low self-esteem ( β = -0.25 and β = -0.29) were significantly associated with increased depressive and anxiety symptoms. In the hierarchical regression analyses, only high neuroticism was significantly associated with increased depressive ( β = 0.42, p < 0.05) and anxiety ( β = 0.55, p < 0.001) symptoms. Conclusions Personality traits are not the same between the SCI population and the general population. Assessment of personality traits early in inpatient rehabilitation can help to identify individuals at risk of mood problems and, thereby, facilitate interventions. Future research with a larger, representative SCI sample, is required to confirm these findings.

ABSTRACT Background After stroke, many patients experience problems with participation in daily activities. Improving participation is the main goal in stroke rehabilitation. However, the longitudinal relationship between participation and health-related quality of life (HRQoL) remains unclear. Objectives This study aimed to examine (1) the predictive value of participation at two months on long-term HRQoL and (2) the longitudinal relationship between participation and HRQoL. Methods In this multicenter, prospective cohort study, patients were assessed at two and 12 months after stroke. Participation was measured with the Restriction subscale of the Utrecht Scale for Evaluation of Rehabilitation – Participation. HRQoL was assessed with the three-level version of the EuroQoL five dimensions questionnaire index score. Results This study included 291 patients. Mean age was 66.6 ± 12.4 years, 64.3% were male and mean National Institutes of Health Stroke Scale (NIHSS) was 2.5 ± 2.9. Multivariable linear regression, adjusted for demographic characteristics, stroke characteristics, physical and cognitive impairment, showed that a higher level of participation at two months correlated with a higher HRQoL at one year (B = .004; 95% CI =.002–.005). Patients whose participation improved had a greater increase in HRQoL, compared to patients without improvement (0.080 ± .21 versus −.054 ± .21; p < .001). Conclusions The level of participation at two months post-stroke predicts HRQoL at one year. Improvement in participation during the first year after stroke is associated with improvement in HRQoL. We recommend including the assessment of participation in daily activities at follow-up visits.

OBJECTIVE:To assess the test-retest reliability and agreement of the work ability index-single item (WAS) in persons with a physical disability. DESIGN:Test-retest study, with a 2-4 week interval. Test-retest reliability was computed using the intraclass correlation coefficient (ICC). The agreement was analyzed using Bland-Altman plots. SETTING:Vocational rehabilitation department of a rehabilitation center. PARTICIPANTS:Patients with a physical disability (spinal cord injury, acquired brain injury, neuromuscular disease, or other). INTERVENTIONS:Not applicable. MAIN OUTCOME MEASURES:The WAS consists of 1 question on self-reported current work ability compared with their highest work ability ever, rated on a 0-10 scale. RESULTS:Data from 44 patients were available and 22 patients reported no changes in work or medical situation between the 2 measurements. After excluding 1 outlier in this subgroup (n=21), the ICC was 0.89 (95% confidence interval, 0.76-0.96), the mean test-retest difference was -0.05 points and the limits of agreement were ±2.4 points. CONCLUSIONS:The WAS is reliable for measuring work ability in persons with a physical disability. Using the WAS could be valuable as a routine outcome measure in vocational rehabilitation for persons with a physical disability.

PurposeTo investigate: (1) changes in body satisfaction during five months of handcycle training and one year after the training period; (2) whether longitudinal changes are dependent on sex, waist circumference and severity of the physical impairment; (3) associations between changes in physical capacity or body composition, and body satisfaction.Materials and methodsIndividuals (N = 143) with health conditions such as spinal cord injury filled out the Adult Body Satisfaction Questionnaire: at the start of the training (T1), directly after the training period (T2); and four months (T3) and one year after the training period (T4). At T1 and T2, physical capacity was determined with an upper-body graded exercise test, and waist circumference was measured. Handcycling classification was used as a proxy for the severity of impairment.ResultsMultilevel regression analyses showed that body satisfaction significantly increased during the training period and significantly decreased back to pre-training levels at follow-up. Individuals with more severe impairments showed a larger decrease at T4. Improvements in physical capacity and waist circumference were significantly associated with improvements in body satisfaction.ConclusionsBody satisfaction significantly increased during the training period, but significantly decreased during follow-up. Additional efforts might be necessary to keep individuals engaged in long-term exercise.

Study designCross-sectional study.ObjectivesWork-related disability is common in persons with spinal cord injury (SCI). The aims of this study are to examine the associations of employment with self-perceived health (SPH) and quality of life (QoL) across 22 countries and to explore the covariates around employment and SPH and QoL.SettingCommunity.MethodsWe analyzed 9494 community-dwelling persons with SCI aged 18-65. We performed an adjusted regression and path analysis. The independent variable was 'employment' and the dependent variables were two single items: QoL (very poor to very good) and SPH (excellent to poor). Covariates included the Gross Domestic Product (GDP), education, time since SCI, age, gender, years of employment after SCI, SCI level (paraplegia, tetraplegia), and completeness of SCI.ResultsParticipants' mean age was 47, 74% were male, and 63% had paraplegia. We found an association between employment and QoL and SPH. While the magnitude of the effect of employment on QoL did not differ across GDP quartiles, its perceived effect on QoL was found to be significant in the highest GDP quartile. Employment was predictive of good SPH in two GDP quartiles (Q1 and Q4), but significant across all quartiles when predicting poor perceptions, with the magnitude of effect varying significantly.ConclusionsEmployment is closely related to QoL and SPH depending on the GDP. We may positively influence the QoL and SPH in the SCI population to promote better employment outcomes by considering the infrastructure and economy.

Study design Longitudinal cohort study. Objectives Examine the longitudinal association between mobility and level of physical activity (PA) and explore which other factors are also associated with level of PA in ambulatory people with Spinal Cord Injury (SCI) during the first-year post-inpatient rehabilitation. Setting Three SCI-specialized rehabilitation centers and the Dutch community. Methods Forty-seven adults with recent SCI and ambulatory function were included. All had motor incomplete lesions, 49% had tetraplegia, and the mean age was 55 ± 13 years. Duration of accelerometry-based all-day PA and self-reported level of mobility, exertion of walking, pain, fatigue, depressive mood symptoms, fear of falling, exercise self-efficacy, and attitude toward PA were measured just before discharge from inpatient rehabilitation and 6 and 12 months after discharge. All data were longitudinally analyzed using generalized estimating equations analyses. Models were corrected for age, lesion level, and time since injury. Results Mobility was longitudinally associated with level of PA (beta: 4.5, P < 0.001, R 2 : 41%). In addition, lower levels of exertion of walking (beta: −5.6, P < 0.001), fear of falling (beta: −34.1, P < 0.001), and higher levels of exercise self-efficacy (beta: 2.3, P = 0.038) were associated with higher levels of PA. Exertion of walking and fear of falling were associated with level of PA independent of mobility. Conclusions Mobility, exertion of walking, fear of falling, and exercise self-efficacy seem to be correlates of level of PA in ambulatory people with SCI during the first year after inpatient rehabilitation. Targeting these factors using an interdisciplinary approach may enhance levels of PA in this population.