Change in environmental barriers experienced over a 5-year period by people living with spinal cord injury in Switzerland:a prospective cohort study

STUDY DESIGN: Cohort study with two measurement occasions. OBJECTIVES: To investigate change in environmental barriers experienced by people living with spinal cord injury (SCI) over a 5-year period. SETTING: Community, Switzerland. METHODS: Data were from the Swiss spinal cord injury (SwiSCI) survey. Main outcome measure was the Nottwil Environmental Factors Inventory-Short Form. Random-effects Poisson regression featuring between-within estimation was used to examine predictors of the number of environmental barriers and of its change over time. RESULTS: One thousand five hundred and forty-nine persons participated in Survey 2012 and 1530 participated in Survey 2017; 761 participated in both surveys. In both surveys most participants reported at least three barriers. Leading issues were unfavorable climate, inaccessibility of buildings and public spaces, and lack of or insufficiently adapted means of transportation. Reporting of barriers related to climate, finances, and state services declined over time. Between subjects, having more health problems, lesser physical independence, poorer mental health, and a lower household income were related to a higher number of barriers experienced. Within subjects, improvements in income, physical independence, and mental health over time were related to a reduction in barriers. CONCLUSIONS: Inaccessibility of buildings and places and problems with transportation remained major barriers over a 5-year period and should be priorities of Swiss disability policy. People with reduced mental and physical health, and those with lower income are vulnerable groups deserving specific attention. Policies targeting income and life-long rehabilitation targeting health promotion and maintenance may be suitable means to reduce the experience of environmental barriers

Measurement Properties of the Full and Brief Version of the Work Rehabilitation Questionnaire in Persons with Physical Disabilities

Purpose The Work Rehabilitation Questionnaire (WORQ) is a self-report vocational rehabilitation assessment. A comprehensive (WORQ-FULL) and a brief version (WORQ-BRIEF) are available. The purpose of this study was to investigate measurement properties of both versions in persons with physical disabilities. Methods Cross sectional and test-retest design. Adults with physical disabilities in vocational rehabilitation were included. Internal consistency (Cronbach's alpha), test-retest reliability (intra-class correlation; ICC), agreement between sessions (Bland-Altman Plots), criterion validity (ICC and agreement with Bland-Altman Plots between WORQ-FULL and WORQ-BRIEF) and convergent validity with the Work Ability Index -Single item (WAS) and the EuroQOL 5D-5L were analyzed. Results Out of the 91 individuals who agreed to participate, 74 (81%) returned questionnaire T1 and 49 (54%) participants returned questionnaire T2 within the maximum time interval (= 27 days). At T2, 28 (57%) participants reported no medical changes compared to T1. Median age was 49 (IQR 40-60), 57% were male, 47% had experienced a stroke and 27% a spinal cord injury (n = 49). Internal consistency was good: 0.95/0.95/0.94 for the WORQ-FULL and 0.88/0.89/0.85 for the WORQ-BRIEF (n = 74/n = 48/n = 28, respectively). Test-retest reliabilitywas good: ICC = 0.86/0.85 for the WORQ-FULL and ICC = 0.87/0.86 for the WORQ-BRIEF (n = 49/ n = 28). Bland Altman plots suggested a higher score at T1. As for criterion validity of the WORQ-FULL versus the WORQ-BRIEF, ICC was good (ICC = 0.84; n = 74), however Bland Altman plots indicated potential bias. Correlations with the WAS/EuroQOL 5D-5L were variable: r = -0.24/r = -0.57 (WORQ-FULL) and r = -0.28/-0.65 (WORQ-BRIEF). Conclusions The WORQ showed good internal consistency and test-retest reliability. Agreement demonstrated large score differences are needed to indicate change beyond random chance at individual level, whereas small changes are sufficient at group level. Criterion validity of the WORQ-FULL versus the WORQ-BRIEF was supported, however, agreement demonstrated moderate to large score differences are needed to indicate change beyond random chance at individual level, whereas small changes are sufficient at group level. This indicates the WORQ-FULL and WORQ-BRIEF are better not used interchangeably. Correlation analyses provided better insight in the validity of the WORQ. Convergent validity was supported for the WORQ-BRIEF with the EuroQoL 5D-5L (r = -0.65)

Cohort Profile of the International Spinal Cord Injury Community Survey Implemented in 22 Countries

Objectives: To detail the methodological features of the first International Spinal Cord Injury (InSCI) Community Survey by describing recruitment and data collection procedures, and to report on the recruitment results and basic characteristics of participants by country and income setting. Design: Cross-sectional survey. Setting: Community setting in 22 countries representing all 6 World Health Organization regions. Participants: Individuals (N = 12,591) with traumatic or non-traumatic spinal cord injury (SCI) aged over 18 years. Interventions: Not applicable. Main Outcome Measures: Recruitment and data collection procedures, recruitment results, and basic sociodemographic and lesion characteristics of participants. Results: Eight countries used predefined sampling frames and 14 countries applied convenience sampling for recruitment. Most countries recruited participants through specialized rehabilitation facilities, patient organizations, or acute and general hospitals. Modes of approaching potential participants depended on the sampling strategy and multiple response modes were offered to maximize participation. Contact rates ranged from 33% to 98%, cooperation rates ranged from 29% to 90%, and response rates ranged from 23% to 54%. The majority of participants were men (73%), the median age was 52 years (interquartile range, 40-63y), 60% had a partner, 8% reported that they were born in another country than where they were currently residing, and the median length of education was 12 years (interquartile range, 9-15y). Paraplegia was the main diagnosis (63%), traumatic etiologies were the major cause of injury (81%), and the median time since injury (TSI) was 9 years (interquartile range, 4-19y). Compared with participants from lower income settings, participants from higher income settings were over-represented and, in general, were older, more often diagnosed with tetraplegia, had a longer TSI, higher education, and were more often born in a country different than their current residence country. Conclusions: The successful implementation of the InSCI survey enables the comparison of the situation of individuals with SCI around the world and constitutes a crucial starting point for an international learning experience. (C) 2020 by the American Congress of Rehabilitation Medicin

Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation:a systematic review

Purpose: (1) To identify measures used to evaluate the impact of caregiving among caregivers of persons with stroke, spinal cord injury, and amputation; and (2) to systematically evaluate their clinimetric properties reported in validation studies. Materials and methods: Two separate systematic reviews (Embase, PsycINFO, CINAHL, Pubmed/Medline) were conducted. COSMIN guidelines were used to assess clinimetric properties and methodological quality of studies. Results: (1) 154 studies published between 2008 and May 2019 were included, in which 48 measures were used, mostly describing negative impact. Thirty measures were used only once and not further described. (2) In general, structural validity, internal consistency, and hypothesis testing were often investigated. Reliability, cross-cultural and criterion validity to a lesser extent, and scale development and content validity were rarely described. Tests of measurement error and responsiveness were exceptional. Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire. Conclusions: There is a wide variety of impact of caregiving measures. The present study provided a detailed overview of what is known about clinimetric characteristics of 18 different measures repeatedly used in research. The overview provides clinicians a guidance of appropriate measure selection. PROSPERO registration: CRD4201809479

Reliability and validity of the Brief Illness Perception Questionnaire (B-IPQ) in individuals with a recently acquired spinal cord injury

Objective To assess the reliability and validity of the Brief Illness Perception Questionnaire (B-IPQ) and possible subscales, and to interpret Brief Illness Perception Questionnaire (B-IPQ) total scores, in individuals with a spinal cord injury. Design Cross-sectional Setting Seven Dutch rehabilitation centres Subjects Individuals with a recently acquired traumatic or non-traumatic spinal cord injury at the start of inpatient spinal cord injury rehabilitation (N = 270). Main measure The Brief Illness Perception Questionnaire (B-IPQ) consists of eight items on an individual's cognitive and emotional representation of one's health conditions. Principal component analysis was performed to identify possible Brief Illness Perception Questionnaire (B-IPQ) subscales. Validity was assessed by testing hypotheses on correlations between the Brief Illness Perception Questionnaire (B-IPQ) and other measures. Cut-off points of the Brief Illness Perception Questionnaire (B-IPQ) total score were determined. Results Mean (SD) age of participants was 60.1 (16.5) years, 188 (71%) were male, and 119 (44%) had tetraplegia. Three potential subscales were revealed. Cronbach's alpha was acceptable for only one subscale. This subscale was named 'consequences' and included the items 'consequences', 'symptom burden', 'concern', and 'emotions'. The Brief Illness Perception Questionnaire (B-IPQ) total and the consequence subscale showed the expected strong correlations (>.50) with symptoms of anxiety and depression. Mean (SD) scores were 40.9 (12.3) on the 8-item Brief Illness Perception Questionnaire (B-IPQ) (range 0-80) and 25.1 (8.1) on the consequences subscale (range 0-40). Cut-off points for the Brief Illness Perception Questionnaire (B-IPQ) total score were determined as follows: = 50 indicating high experienced threat. Conclusion The Brief Illness Perception Questionnaire (B-IPQ) total and consequences subscale seem applicable in individuals with a spinal cord injury in the rehabilitation practice and research

Content validity of the Work Rehabilitation Questionnaire (WORQ) for persons with spinal cord injury:A mixed methods study

STUDY DESIGN: Mixed methods. OBJECTIVES: The aim of our study was to investigate the content validity of the Work Rehabilitation Questionnaire (WORQ) for use in persons with post-acute and chronic spinal cord injury (SCI). SETTING: A university-based Rehabilitation Center in The Netherlands. METHODS: Contents of the WORQ, brief ICF core sets for SCI for post-acute care and for chronic situation were compared with semi-guided interviews with persons with SCI and controlled for relevance by SCI rehabilitation professionals in two group meetings. RESULTS: Fourteen interviews with persons with SCI were performed. Two group meetings with 8 and 9 SCI rehabilitation professionals were held. Thirty seven of the 46 ICF categories (80%) of the WORQ were confirmed by both sources: mentioned in interviews with persons with SCI and considered important by the SCI professionals. The remaining 9 categories (20%) were confirmed by either the persons with SCI or the SCI professionals. Fourteen ICF categories that are part of the brief ICF core set for SCI for acute care and/or chronic situation, however are not part of the WORQ, have revealed importance by persons with SCI and SCI professionals. CONCLUSION: Our study confirms that most categories of the WORQ are important to consider for VR in persons with SCI, however, there are ICF categories that are absent in the WORQ and deemed relevant for use in VR in persons with SCI. Consequently, the content validity of the WORQ without additional items is insufficient for persons with SCI

Prediction of Psychological Distress Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others

Objectives: To identify intra- and interpersonal sociodemographic, injury-related, and psychological variables measured at admission of inpatient rehabilitation that predict psychological distress among dyads of individuals with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others (ie, individuals close to the individual with a disability, mostly family members) 6 months after discharge. Differences in predictors were investigated for persons with SCI or ABI and their significant others and were compared between diagnoses. Design: Prospective longitudinal study. Setting: Twelve Dutch rehabilitation centers. Participants: Dyads (N= 157) consisting of adults with SCI or ABI who were admitted to inpatient rehabilitation and their adult significant others. Interventions: Not applicable. Main Outcome Measures: Psychological distress (Hospital Anxiety and Depression Scale). Results: Sociodemographic and injury-related variables were not or were only weakly associated with psychological distress among individuals with SCI or ABI and their significant others 6 months after discharge. Bivariately, higher baseline psychological distress, lower scores on adaptive psychological characteristics (combination of self-efficacy, proactive coping, purpose in life, resilience), and higher scores on maladaptive psychological characteristics (combination of passive coping, neuroticism, appraisals of threat and loss) were related to higher psychological distress, as well as crosswise between individuals with SCI or ABI and their significant others, although less strongly. Combined prediction models showed that psychological distress among persons with SCI or ABI was predicted by education level of their significant other, their own baseline psychological distress, and their own maladaptive psychological characteristics (explained variance, 41.9%). Among significant others, only their own baseline psychological distress predicted psychological distress (explained variance, 40.4%). Results were comparable across diagnoses. Conclusions: Although a dyadic connection was shown, primarily one's own baseline psychological distress and psychological characteristics were important in the prediction of later psychological distress among both individuals with SCI or ABI and their significant others. Screening based on these variables could help to identify persons at risk for psychological distress. (C) 2020 by the American Congress of Rehabilitation Medicin

Longitudinal Changes in Psychological Adaptation Outcomes During Spinal Cord Injury Inpatient Rehabilitation

Impact and Implications Although the psychological adaptation process to a spinal cord injury (SCI) may extend over years, improvements in mental health and life satisfaction can be observed at the group level during SCI inpatient rehabilitation. Still, at the individual level, different adaptation patterns such as improvement, resilience, or vulnerability can be identified. Clinicians should be aware that resilient responses in some adaptation outcomes may coexist with vulnerability in other outcomes. These findings highlight the importance screening processes during inpatient rehabilitation to detect early signs of psychological adaptation issues, and the need for psychosocial support extending beyondinpatient rehabilitation. Specific psychosocial factors can be targeted during inpatient rehabilitation to promote a more favorable psychological adaptation process across different outcomes with more general self-efficacy and social support contributing to improvement in depressive symptoms and optimism to improvements in distress and life satisfaction. Objectives: To determine average changes and individuals' patterns of change in depressive symptoms, anxiety symptoms, general distress, and life satisfaction between admission to spinal cord injury inpatient rehabilitation and discharge; and to identify factors associated with change. Method: Longitudinal data collection as part of a national cohort study (N = 281). Changes in the psychological adaptation outcomes were analyzed using latent change score models. Reliable change indexes were calculated for each outcome to identify individuals' patterns of change. Biopsychosocial factors were examined as covariates of change. Results: On average, depressive symptoms, anxiety symptoms, and general distress decreased between admission and discharge, while life satisfaction increased. According to the reliable change indexes, several adaptation patterns were identified. The proportion of individuals following each pattern varied depending on the analyzed outcome: resilience (absence of clinically relevant symptoms at admission and discharge) was the most common for symptoms of depression (61.57%) and anxiety (66.55%), whereas vulnerability (clinically relevant symptoms at both measurement times) was the most common for distress (57.32%). Improvement patterns (statistically significant decreases) were identified for 6.41%, 4.27%, and 7.83% of participants in depressive symptoms, anxiety symptoms and distress, respectively. For life satisfaction, improvement (statistically significant increases) was found for 8.54%. Male sex, tetraplegia, self-efficacy, optimism, and social support were associated with average changes in the psychological adaptation outcomes. Conclusions: On average, participants showed improvement in all analyzed outcomes. Still, there is substantial variability in change. Self-efficacy, social support, and optimism are potential intervention targets during inpatient rehabilitation to promote a favorable psychological adaptation process

Post-traumatic stress disorder symptoms and pain intensity in persons with spinal cord injury

Study design Cross-sectional. Objectives To examine the association between post-traumatic stress disorder (PTSD) symptoms and pain intensity, taking symptoms of anxiety and depression into account within persons with spinal cord injury (SCI). Setting Persons with SCI, who visited a Dutch rehabilitation centre between 2005 and 2010, were invited to complete a survey. Methods PTSD symptoms were measured with the Trauma Screening Questionnaire (TSQ), pain intensity with an 11-point Numerical Rating Scale (NRS), and symptoms of anxiety and depression with the Hospital Anxiety and Depression Scale (HADS). To determine associations between PTSD symptoms and pain intensity, linear regression analyses were performed. Confounding variables representing anxiety and depression were added to the final model. Results In total, 175 participants (55.8% traumatic, 29.1% complete) were included (response rate of 31.7%). Of them, 11.4% had clinically relevant symptoms of probable PTSD (TSQ score >= 6) 69.8% experienced moderate to severe pain levels (NRS >= 4), 14.9% had symptoms of anxiety and 20.8% symptoms of depression (HADS scores >= 11). Levels of PTSD symptoms were strongly associated with symptoms of anxiety (0.54) and depression (0.49). Bivariate analyses showed a moderate significant association (0.30) between PTSD symptoms and pain intensity. This association became small (0.10) when anxiety and depression comorbidity were factored into the final regression model. Conclusions No independent association between PTSD symptoms and pain intensity was shown when adjusted for anxiety and depression. Results of this study suggest the usefulness of screening for PTSD in persons with SCI (regardless of injury cause or type/level) who score high on symptoms of anxiety/depression

Rasch Analysis of the International Quality of Life Basic Data Set Version 2.0

Objective: To examine the internal construct validity of the International Spinal Cord Injury Quality of Life Basic Data Set Version 2.0 (QoL-BDS V2.0) and compare this with the internal construct validity of the original version of the QoL-BDS. Design: International cross-sectional psychometric study. Setting: Spinal rehabilitation units, clinics, and community. Participants: The study involved 5 sites and 4 countries, 2 of whose primary language is not English. Each site included a consecutive sample of inpatients with spinal cord injury or disease (SCI/D) and a convenience sample of individuals with SCI/D living in the community (N=565). Main outcome measures: The QoL-BDS V2.0 consists of the 3 original items on satisfaction with life as a whole, physical health, psychological health of the QoL-BDS, and an additional item on satisfaction with social life. All 4 items are answered on a 0-10 numeric rating scale. Rasch analysis was performed on versions 1.0 and 2.0 of the QoL-BDS to examine the ordering of the items' response options, item scaling, reliability, item fit, local item independence, differential item functioning, and unidimensionality. Results: The sample included 565 participants with 57% outpatients and 43% inpatients. Mean age was 51.4 years; 71% were male; 65% had a traumatic injury, 40% had tetraplegia, and 67% were wheelchair users. Item thresholds were collapsed for ordering, and subsequent analyses showed good internal construct validity for the QoL-BDS V2.0 with a person separation reliability of 0.76 and Cronbach α of 0.81. Infit and outfit statistics ranged 0.62-0.91. No local dependencies and multidimensionality were found. Differential item functioning was observed only for country and inpatients vs outpatients but not for other participants' characteristics. Differences in internal construct validity between the 3-item and 4-item versions were minimal. Conclusions: The results of this Rasch analysis support the internal construct validity of the QoL-BDS V2.0