Reciprocal association between pain and quality of life after newly acquired spinal cord injury.

PURPOSE: 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. METHODS: 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% were male and the average age was 53.2 years. Random intercept cross-lagged panel models were conducted to examine the reciprocal association between pain intensity and QoL, as measured with the International SCI QoL Basic Data Set three individual items (satisfaction with life, physical health, and psychological health) and total score (mean of the three individual items). RESULTS: Both item and total QoL scores increased over time. 1 month: 5.3 (SD = 2.7), 3 months: 5.9 (SD = 2.3), discharge: 6.6 (SD = 2.0). Participants reported relatively low levels of pain intensity that remained stable over the course of inpatient rehabilitation. 1 month: 2.7 (SD = 2.3), 3 months: 2.6 (SD = 2.4), discharge: 2.7 (SD = 2.5). There were no significant cross-lagged associations between QoL and pain intensity across time. CONCLUSION: Results indicate that pain intensity does not predict changes in QoL during first rehabilitation, and vice versa. Associations between pain intensity and QoL reported by previous studies may be attributable to individual characteristics and timely events that simultaneously influence pain and QoL.

Validation of the AO Spine CROST (Clinician Reported Outcome Spine Trauma) in the clinical setting.

PURPOSE: To evaluate feasibility, internal consistency, inter-rater reliability, and prospective validity of AO Spine CROST (Clinician Reported Outcome Spine Trauma) in the clinical setting. METHODS: 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. RESULTS: 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%. Exact agreement per CROST item showed good results (73.9-98.9%). Kappa statistics revealed moderate agreement for most CROST items. In the prospective analysis a trend was only seen when no concerns at all were expressed by the surgeon (CROST = 0), and moderate to strong positive Spearman correlations were found between CROST at baseline and the scores at follow-up (rs = 0.41-0.64). Comparing the CROST with PROST showed no specific association, nor any Spearman correlations (rs = -0.33-0.07). CONCLUSIONS: The AO Spine CROST showed moderate validity in a true clinical setting including patients from the daily clinical practice.

Relationship between employment and quality of life and self-perceived health in people with spinal cord injury: an international comparative study based on the InSCI Community Survey.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: Work-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. SETTING: Community. METHODS: We 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. RESULTS: Participants' 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. CONCLUSIONS: Employment 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.

Correlates of physical activity in ambulatory people with spinal cord injury during the first year after inpatient rehabilitation.

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, R2: 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.

Obesity in wheelchair users with long-standing spinal cord injury: prevalence and associations with time since injury and physical activity.

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/m2) 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.

Associations between personality traits and depressive and anxiety symptoms among persons with spinal cord injury in first inpatient rehabilitation.

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 (ß = 0.42 and ß = 0.53) and low self-esteem (ß = -0.25 and ß = -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 (ß = 0.42, p < 0.05) and anxiety (ß = 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.

The social dimension of quality of life following spinal cord injury or disease: an international ICF-linking study.

STUDY DESIGN: International Classification of Functioning, Disability and Health (ICF) linking study. OBJECTIVE: Analyze 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). SETTING: Four specialized outpatient clinics in SCI/D rehabilitation, from the US, Brazil and Australia. METHODS: Analysis 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. RESULTS: The 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. CONCLUSION: The 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.

Relationship between secondary health conditions and life satisfaction in persons with spinal cord injury: study across twenty-one countries.

PURPOSE: To determine the relationships between impact of secondary health conditions (SHCs), treatment of SHCs, and life satisfaction (LS) following spinal cord injury (SCI) across 21 countries. Hypotheses were as follows: (1) Persons with SCI and fewer SHCs report higher LS and (2) Persons who receive treatment for SHCs report higher LS than those who do not receive treatment. METHODS: Cross-sectional survey, including 10,499 persons with traumatic or non-traumatic SCI aged 18 years or older and living in the community. To assess SHCs, 14 items adapted from the SCI-Secondary Conditions Scale were used (range 1-5). SHCs index was calculated as the mean of all 14 items. LS was assessed using a selection of 5 items from the World Health Organization Quality of Life Assessment. LS index was calculated as the mean of these 5 items. RESULTS: South Korea, Germany, and Poland exhibited the highest (2.40-2.93) and Brazil, China, and Thailand the lowest (1.79-1.90) impact of SHCs. Indexes for LS and SHCs were inversely correlated (- 0.418; p < 0.001). Mixed Model Analysis showed that the fixed effect (key predictors of the study) of SHCs index (p < 0.001) and the positive interaction between SHCs index and treatment (p = 0.002) were significant determinants of LS. CONCLUSION: Persons with SCI across the world are more likely to perceive better LS if they experience fewer SHCs and receive treatment for SHCs, in comparison to those who do not. Prevention and treatment of SHCs following SCI should be a high priority in order to improve the lived experience and enhance LS.

Prevalence and Determinants of Pain in Spinal Cord Injury During Initial Inpatient Rehabilitation: Data From the Dutch Spinal Cord Injury Database.

OBJECTIVE: To describe the prevalence and characteristics of spinal cord injury (SCI)-related pain during initial inpatient rehabilitation and to investigate relationships with demographic and lesion characteristics. DESIGN: Cohort during inpatient rehabilitation. SETTING: Eight specialized SCI rehabilitation centers in the Netherlands. PARTICIPANTS: Patients with newly acquired SCI admitted for inpatient rehabilitation between November 2013 and August 2019 (N=1432). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Presence of pain at admission and discharge. Logistic regression analyses were used to study the prevalence of pain related to sex, age, etiology, completeness, and level of injury. RESULTS: Data from 1432 patients were available. Of these patients 64.6% were male, mean age was 56.8 years, 59.9% had a nontraumatic SCI, 63.9% were classified as American Spinal Cord Injury Association Impairment Scale (AIS) D and 56.5% had paraplegia. Prevalence of pain was 61.2% at admission (40.6% nociceptive pain [NocP], 30.2% neuropathic pain [NeuP], 5.4% other pain) and 51.5% at discharge (26.0% NocP, 31.4% NeuP, 5.7% other pain). Having NocP at admission was associated with traumatic SCI. AIS B had a lower risk of NocP than AIS D at admission. Having NocP at discharge was associated with female sex and traumatic SCI. AIS C had a lower risk of NocP at discharge than AIS D. Having NeuP at admission was associated with female sex. Having NeuP at discharge was associated with female sex, age younger than 65 years vs age older than 75 years and tetraplegia. CONCLUSIONS: SCI-related pain is highly prevalent during inpatient rehabilitation. Prevalence of NocP decreased during inpatient rehabilitation, and prevalence of NeuP stayed the same. Different patient and lesion characteristics were related to the presence of SCI-related pain. Healthcare professionals should be aware of these differences in screening patients on presence and development of pain during inpatient rehabilitation.

Health professionals' perspective on the applicability of AO Spine PROST (patient reported outcome Spine trauma) in people with a motor-complete traumatic or non-traumatic spinal cord injury.

PURPOSE: The AO Spine PROST (Patient Reported Outcome Spine Trauma) was developed for people with spine trauma and minor or no neurological impairment. The purpose is to investigate health professionals' perspective on the applicability of the AO Spine PROST for people with motor-complete traumatic or non-traumatic spinal cord injury (SCI), using a discussion meeting and international survey study. METHODS: A discussion meeting with SCI rehabilitation physicians in the Netherlands was performed, followed by a worldwide online survey among the AO Spine International community, involved in the care of people with SCI. Participants rated the comprehensibility, relevance, acceptability, feasibility and completeness of the AO Spine PROST on a 1-5 point scale (5 most positive). Comments could be provided per question. RESULTS: The discussion meeting was attended by 13 SCI rehabilitation physicians. The survey was completed by 196 participants. Comprehensibility (mean ± SD: 4.1 ± 0.8), acceptability (4.0 ± 0.8), relevance (3.9 ± 0.8), completeness (3.9 ± 0.8), and feasibility (4.1 ± 0.7) of the AO Spine PROST were rated positively for use in people with motor-complete traumatic or non-traumatic SCI. Only a few participants questioned the relevance of items on the lower extremities (e.g., walking) or missed items on pulmonary functioning and complications. Some recommendations were made for improvement in instructions, terminology and examples of the tool. CONCLUSION: Health professionals found the AO Spine PROST generally applicable for people with motor-complete traumatic or non-traumatic SCI. This study provides further evidence for the use of the AO Spine PROST in spine trauma care, rehabilitation and research, as well as suggestions for its further development.

Labour market participation after spinal cord injury. A register-based cohort study.

STUDY DESIGN: A register based cohort study. OBJECTIVES: To investigate labour market participation following spinal cord injury (SCI) and to describe the impact of personal and SCI characteristics. SETTING: Norway. METHODS: Persons registered with SCI in the Norwegian SCI registry 2011-2017, and matched reference individuals without SCI from the general population (named controls) were followed for up to six years after injury using national registry data on employment, education, income, and social security benefits. Main measures of labour market participation were: (1) Receiving any amount of pay for work, and (2) Receiving sickness and disability benefits. RESULTS: Among the 451 persons with SCI (aged 16-66 years and working before injury), the estimated percentages receiving pay for work and sickness and disability benefits in the sixth years after injury were 63% (95% CI 57-69) and 67% (95% CI 61-72). Corresponding percentages for the controls (n = 1791) were 91% (95% CI 90-93) for receiving pay for work and 13% (95% CI 12-15) for receiving sickness and disability benefits. Among persons with SCI, less severe neurological outcome, higher level of education, younger age at injury, and a stronger pre-injury attachment to employment (higher employment income, having an employer, less receipt of benefits), were associated with higher labour market participation. CONCLUSION: SCI substantially decreased labour market participation up to six years after injury compared to matched controls. Even if a relatively large proportion of persons with SCI remained in some degree of work activity, more than half did so in combination with receiving benefits.

Relationships between cardiovascular disease risk, neuropathic pain, mental health, and autonomic function in chronic spinal cord injury.

STUDY DESIGN: Multicentre, cross-sectional study. OBJECTIVES: To determine if clinical measures of poor mental health (MH-) and neuropathic pain (NP) are related to increased CVD risk in individuals with chronic spinal cord injury (SCI), and further elucidate the relationships between CVD risk, autonomic function, NP, and MH-. SETTING: Eight SCI rehabilitation centres in the Netherlands. METHODS: Individuals (n = 257) with a traumatic, chronic (≥10 yrs) SCI, with age at injury between 18-35 years, completed a self-report questionnaire and a one-day visit to a rehabilitation centre for testing. CVD risk was calculated using Framingham risk score. NP was inferred using The Douleur Neuropathique 4 clinical examination, and MH- was assessed using the five-item Mental Health Inventory questionnaire. Cardiovascular autonomic function was determined from peak heart rate during maximal exercise (HRpeak). RESULTS: There was a high prevalence of both NP (39%) and MH- (45%) following SCI. MH- was significantly correlated with an adverse CVD risk profile (r = 0.174; p = 0.01), increased the odds of adverse 30-year CVD risk by 2.2 (CI 0.92-2.81, p = 0.02), and is an important variable in determining CVD risk (importance=0.74, p = 0.05). Females (p = 0.05) and those with a higher HRpeak (p = 0.046) tended to be more likely to have NP. CONCLUSIONS: Clinical measures of MH-, but not NP, are important factors for increased CVD risk following SCI. NP tended to be more prevalent in those with more preserved cardiovascular autonomic function. The interrelationships between secondary consequences of SCI are complex and need further exploration.

Changes in bladder emptying during inpatient rehabilitation after spinal cord injury and predicting factors: data from the Dutch Spinal Cord Injury Database.

STUDY DESIGN: Secondary analysis of multicentre prospective observational data. OBJECTIVES: To describe methods of bladder emptying at admission and discharge in patients with recently acquired spinal cord injury (SCI) and to describe predictors of bladder emptying methods at discharge. SETTING: First inpatient rehabilitation in specialised rehabilitation centres in the Netherlands. METHODS: Data from the Dutch Spinal Cord Injury Database collected between 2015 and 2019 were used. McNemar-Bowker test was used to evaluate if bladder emptying methods differed over time; One-Way ANOVA and Chi-Square tests to see if bladder emptying methods differed by demographic and injury-related characteristics. Binary logistic regression was used to predict the type of bladder emptying at discharge with demographic and injury-related characteristics measured at admission. RESULTS: Of 1403 patients, 44.1% had cervical, 38.4% thoracic and 17.5% lumbosacral lesions at admission. AIS classification was mostly D (63.8%). The method of bladder emptying changed significantly (p < 0.001) from admission to discharge: decrease of clean intermittent assisted catheterisation (17.1% to 4.1%) and indwelling catheter (33.4% to 16.3%) and increase in clean intermittent self-catheterisation (CISC, 7.8% to 22.2%) and normal voiding (40.2% to 56.1%). Age, sex, SCI level, AIS classification and level of independence predicted the method of bladder emptying at discharge (all p < 0.001). CONCLUSIONS: During first inpatient rehabilitation, the method of bladder emptying changed resulting in more patients discharged with normal voiding and CISC. Age, sex, SCI level, AIS classification and level of independence in self-care were all confirmed as factors playing a role in this change.

International Spinal Cord Injury Core Data Set (version 3.0)-including standardization of reporting.

STUDY DESIGN: Expert opinion, feedback, revisions and final consensus. OBJECTIVES: To update the International Spinal Cord Injury (SCI) Core Data Set while still retaining recommended standardization of data reporting. SETTING: International. METHODS: Comments on the data elements received from the SCI community were discussed in the International Core Data Set working group. The suggestions from this group were iteratively reviewed. The final version was circulated for final approval. RESULTS: The International SCI Core Data Set (Version 3.0) consists of 21 variables. The variable 'Gender' has been changed to 'Sex assigned at birth'; for the variable 'Spinal Cord Injury Etiology', the item, 'Sports or exercise during leisure time', has been clarified as 'including during leisure time'; for the variables 'Vertebral injury' and 'Associated injuries', the item 'Unknown' is reworded into: 'Not applicable (non-traumatic case)' and 'Unknown'; the variable 'Spinal surgery' has been expanded to include surgeries for individuals with non-traumatic SCI; for the variables related to the International Standards for Neurological Classification of SCI only the neurological level of injury (NLI) and the American Spinal Injury Association (ASIA) Impairment Scale (AIS) are to be reported, and a separate variable is included indicating if the NLI or the AIS or both are impacted by a non-SCI condition. CONCLUSION: The International SCI Core Data Set (Version 3.0) should be collected and reported for all studies of SCI to facilitate uniform descriptions of SCI populations and facilitate comparison of results collected worldwide.

International spinal cord injury socio-demographic basic data set (version 1.0).

STUDY DESIGN: Consensus based on the literature. OBJECTIVE: Create an International Spinal Cord Injury (SCI) Socio-Demographic Basic Data Set (Version 1.0). SETTING: International. METHODS: The development included an iterative process where the authors reviewed existing variables containing socio-demographic variables and created a first dataset draft, which was followed by several revisions through email communications. In addition, the work was conducted in parallel with a similar endeavour within the National Institute of Neurological Disorders and Stroke SCI Common Data Elements project in the United States. Subsequently, harmonization between the two projects was sought. Following this, a review process was initiated, including The International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, and the International Spinal Cord Society (ISCoS) Scientific and Executive Committees, and then by publishing on the respective websites for membership feedback. The draft was sent to about 40 national and international organizations and several interested individuals for feedback. All review comments were discussed in the working group and responded to before the final draft was developed, and finally approved by ASIA Board and the ISCoS Scientific and Executive committees. RESULTS: The final International SCI Socio-Demographic Basic Data Set includes the following variables: Date of data collection, Marital status, Household member count, Years of formal education, and Primary occupation. CONCLUSION: The International SCI Socio-Demographic Basic Data Set will facilitate uniform data collection and reporting of socio-demographic information at the time of injury as well as at post-injury follow-ups to facilitate the evaluation and comparisons across studies.

Longitudinal measurement invariance of the international spinal cord injury quality of life basic data set (SCI-QoL-BDS) during spinal cord injury/disorder inpatient rehabilitation.

PURPOSE: This study aimed at testing the internal consistency and longitudinal measurement invariance of a brief quality of life questionnaire-the spinal cord injury quality of life basic data set (SCI-QoL-BDS)-among individuals with spinal cord injury/disorder undergoing first inpatient rehabilitation. METHODS: Longitudinal data from the Swiss spinal cord injury inception cohort study were used. Participants (n = 218) completed the SCI-QoL-BDS at one and three months post injury and at discharge. The SCI-QoL-BDS consists of three items assessing satisfaction with life as a whole, physical health, and psychological health. Internal consistency was examined at each time point and longitudinal measurement invariance was tested using longitudinal confirmatory factor analysis. RESULTS: Internal consistency coefficients ranged between .82 and .90. The confirmatory factor analysis revealed invariance of the factor structure and of all factor loadings across time. Additionally, all item intercepts except the one of satisfaction with physical health were invariant across time, suggesting partial intercept invariance of the SCI-QoL-BDS. Indeed, a response shift was observed in satisfaction with physical health. This item was evaluated more negatively in the early phase of inpatient rehabilitation, indicating the change of the evolving physical situation after the onset of a spinal cord injury. CONCLUSION: The SCI-QoL-BDS is a consistent and valid measure to assess quality of life among individuals undergoing first spinal cord injury/disorder inpatient rehabilitation. However, we recommend using latent variable frameworks instead of mean scores when examining longitudinal changes in the measure to account for potential response shift.

Comparison of Life Satisfaction in Persons With Spinal Cord Injury Living in 22 Countries With Different Economic Status.

OBJECTIVE: To analyze and compare life satisfaction (LS) in persons with spinal cord injury (SCI) living in 22 countries participating in the International Spinal Cord Injury (InSCI) community survey. The study tested the hypothesis that there are differences in LS across InSCI countries according to the countries' economic status specified as gross domestic product per capita purchased power parity (GDP-PPP). DESIGN: Cross-sectional survey. SETTING: Community setting (22 countries representing all 6 World Health Organization regions). PARTICIPANTS: Persons (N=12,108) with traumatic or nontraumatic SCI aged at least 18 years, living in the community and able to respond to one of the available language versions of the questionnaire. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: LS measured by 5 items selected from the World Health Organization Quality of Life Assessment-BREF: satisfaction with overall quality of life, health, daily activities, relationships, and living conditions. LS index was calculated as the mean of these 5 items. RESULTS: The highest level of LS was reported by persons with SCI living in the United States, Malaysia, and Switzerland (mean range, 3.76-3.80), and the lowest was reported by persons with SCI living in South Korea, Japan, and Morocco (mean range, 2.81-3.16). There was a significant cubic association between LS index and GDP-PPP. Regression tree analysis revealed the main variables differentiating LS index were GDP-PPP and monthly income, followed by time since injury and education. CONCLUSIONS: Life satisfaction reported by persons with SCI related mainly to their country economic situation expressed by GDP-PPP and monthly income. The results of this study underscore the need for policy dialogues to avoid inequalities and improve the life experience in persons with SCI.

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.

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: <42 indicating low experienced threat, 42-49 indicating moderate experienced threat, and ≥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.

Illness perception of individuals with spinal cord injury (SCI) during inpatient rehabilitation: a longitudinal study.

STUDY DESIGN: Multicentre longitudinal study. OBJECTIVES: To assess overall illness perception and specific illness representations at admission and discharge of inpatient spinal cord injury (SCI) rehabilitation, and to detect associations between demographic and injury-related variables, and illness perception. SETTING: Seven Dutch SCI-specialised rehabilitation centres. METHODS: Participants aged >18 years with a recent SCI were screened for cognitive and emotional illness representations at admission and discharge with the Brief Illness Perception Questionnaire (B-IPQ). Differences between B-IPQ item scores at admission and discharge were analysed with the Wilcoxon signed-rank test. Differences between B-IPQ total scores were analysed with the paired-samples t-test. Associations between B-IPQ total scores and other variables were tested with bivariable and multivariable regression analyses. RESULTS: B-IPQ results were available for 270 participants at admission (71% male, 59% paraplegia, 83% incomplete) and 119 at discharge (68% male, 50% paraplegia, 78% incomplete). The extent to which people experienced their SCI as a threat was highest for: 'consequences', 'symptom burden' and 'concern' both at admission and discharge. Participants generally experienced less threat at discharge. A more threatening illness perception was significantly associated with older age, complete SCI and a history of cognitive problems at admission. Age and completeness of injury, together, explained 12% of the variance of overall illness perception at admission. CONCLUSIONS: For most individuals, illness perception positively changed during SCI rehabilitation. Measuring illness perception in inpatient rehabilitation could support the identification of specific treatment goals in order to improve adjustment after SCI.