Use and experienced effectiveness of non-pharmacological treatments for chronic spinal cord injury related pain in The Netherlands: A cross-sectional survey.

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.

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.

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.

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.

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.

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.

Participation in daily life activities at two months after stroke predicts long-term health-related quality of life.

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.

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 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.

Does the disposition of passive coping mediate the association between illness perception and symptoms of anxiety and depression in patients with spinal cord injury during first inpatient rehabilitation?

PURPOSE: To examine associations between illness perception, also called illness cognitions or appraisals, disposition of passive coping, and symptoms of anxiety and depression, and to test whether passive coping mediates the associations between illness perception and symptoms of anxiety and depression. MATERIALS AND METHODS: Longitudinal, multicentre study. Participants were inpatients of spinal cord injury (SCI) rehabilitation. Measures included the Brief Illness Perception Questionnaire (B-IPQ), the Utrecht Coping List passive coping subscale (UCL-P), and the Hospital Anxiety and Depression Scale (HADS). Mediation was tested with the PROCESS tool. RESULTS: The questionnaires were completed by 121 participants at admission and at discharge. Of them, 70% were male, 58% had a paraplegia, and 82% an incomplete lesion. Weak to strong (0.294-0.650) significant associations were found between each pair of study variables. The use of passive coping strategies mediated the associations between illness perception and symptoms of anxiety and depression. CONCLUSION: Symptoms of anxiety and depression were more frequent in people who have a threatening illness perception combined with a lower use of passive coping strategies. Therefore, it is advised that patients are screened and treated for threatening illness perception and high use of passive coping strategies during rehabilitation after SCI.

For rehabilitation professionals it is recommended to screen inpatients with spinal cord injury (SCI) for illness perception and disposition of passive coping to identify those who may be more vulnerable for symptoms of anxiety and depression at admission.Inpatients with SCI who report a threatening illness perception in combination with a high use of passive coping at admission, have an increased risk for symptoms of anxiety and depression.For rehabilitation professionals it is recommended to repeat this screening to support careful planning of psychological (follow-up) treatment and coordination of care at discharge.

Quality of life from the patient perspective at the end of the first rehabilitation after the onset of spinal cord injury/disorder - A qualitative interview-based study.

CONTEXT: At present, there is a lack of information concerning patients' perspectives on their quality of life (QoL) after a recently acquired spinal cord injury/disorder (SCI/D). OBJECTIVE: To explore patients' perspectives on their QoL during their first inpatient rehabilitation after the onset of SCI/D. METHODS: Qualitative study. Semi-structured face-to-face interviews were conducted with 20 participants aged 18 years or older at least three months after the onset of SCI/D and two weeks before they were discharged from their first rehabilitation. Audio-recorded interviews were transcribed and analyzed according to the thematic content analysis. Interviewees rated their QoL with the SCI QoL data set. RESULTS: The interviewees judged their satisfaction with life as a whole, their physical and mental health, as relatively high with values between six and eight (with 10 meaning complete satisfaction). They highlighted social aspects, health topics, and the experience of autonomy as relevant to their concept of QoL. The aspects that positively influenced QoL included the level of well-being in the current social and institutional environment, the increased level of energy, strength, and autonomy in daily life, and an improved mental state derived from general positive personal attitudes. In contrast, the social restrictions during the COVID-19 pandemic, physical issues including pain, a lack of progress associated with psychological dissatisfaction, and limitations in personal independence decreased patients' QoL. CONCLUSION: Since the interviewees described different aspects from the areas of social, health and autonomy as important for their QoL, exploring and addressing these areas should be used to achieve an individualized first rehabilitation.

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.

Changes in body satisfaction during and after a 5-month handcycle training period and associations with physical capacity and body composition in individuals with a physical impairment.

PURPOSE: To 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 METHODS: Individuals (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. RESULTS: Multilevel 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. CONCLUSIONS: Body 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.

Body image disturbances are frequently described in individuals with a physical impairment.An increase in body image can be achieved by improvements in physical capacity and waist circumference as a consequence of training.It is important to keep individuals engaged in exercise, as body satisfaction decreases after termination of the training period.For individuals with severe physical impairments additional efforts are necessary to keep them engaged in exercise.

Development of the self-regulation assessment and content validation using cognitive interviews in a multicultural post-rehabilitation population.

Aim: Self-regulation is one of the main goals of medical rehabilitation. Four themes of self-regulation were identified by former patients and rehabilitation physicians in a previous study. Based on these themes, a measure for self-regulation, the self-regulation assessment (SeRA), was developed. This study aimed to establish the content validity of the SeRA in a multicultural and multi-diagnostic post-rehabilitation population. Methods: The Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology was applied. First, cognitive interviews were held with eight former rehabilitation patients. Feedback was obtained on relevance, comprehensibility, and comprehensiveness of the items. Items with problems were revised. Then, a second series of cognitive interviews was held with 16 former rehabilitation patients with non-Western migration backgrounds. Again, feedback was obtained on relevance, comprehensibility, and comprehensiveness of the items. Results: The first series of cognitive interviews revealed good comprehensiveness, and also comprehensibility or relevance problems with 12 of the 25 items. These items were revised or deleted. Two missing concepts were identified and these were added. There was no need to revise the items based on the results of the second series of cognitive interviews. Conclusion: The final version of the SeRA demonstrated content validity for the studied population. The measure is ready for psychometric analyses in subsequent validation studies.

Responsiveness of the International Spinal Cord Injury Quality of Life Basic Data Set V2.0: An international longitudinal study.

CONTEXT/OBJECTIVE: Examine the sensitivity of the International Spinal Cord Injury Quality of Life Basic Data Set V2.0 (QoL-BDS V2.0) to reflect changes in mobility and secondary health conditions (SHCs) between inpatient rehabilitation and one-year follow-up. DESIGN: International longitudinal study. Questionnaires were administered at baseline (Median 6 weeks, inter-quartile range 4-10 weeks post-onset) and after 12 months. SETTING: Spinal cord rehabilitation institutions in the US, Brazil, Australia and the Netherlands. PARTICIPANTS: : Individuals with recent onset of spinal cord injury or disease (SCI/SCD) admitted to inpatient rehabilitation. OUTCOME MEASURES: The QoL-BDS V2.0, comprises four items on satisfaction with 'life as a whole', 'physical health', 'psychological health', and 'social life'. Mobility level was measured with a single item and SHCs with the SCI Secondary Conditions Scale (SCI-SCS). RESULTS: Of the 160 participants, 61% had SCI, 48% had tetraplegia and 82% were wheelchair-users. Scores on 'life as a whole', 'physical health' and the total scale were significantly higher at follow-up compared to baseline in the total sample and the SCD subgroup, but not in the SCI subgroup. Increases in 'physical health', 'psychological health', 'social life' and the total score were significantly associated with improvements in the SCI-SCS or mobility scores. Participants with improved SCI-SCS and mobility at follow-up showed significantly more improvement in satisfaction with social life and the total score compared to participants without such favorable changes. CONCLUSION: The results of this study provide partial evidence of responsiveness of the QoL-BDS V2.0 total score as a measure of QoL among individuals with SCI/SCD.

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.

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.

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.

Using Self-Regulation Assessment to Explore Associations between Self-Regulation, Participation and Health-Related Quality of Life in a Rehabilitation Population.

OBJECTIVE: Self-regulation, participation and health-related quality of life are important rehabilitation outcomes. The aim of this study was to explore associations between these outcomes in a multi-diagnostic and heterogenic group of former rehabilitation patients. METHODS: This cross-sectional survey used the Self-Regulation Assessment (SeRA), Utrecht Scale for Evaluation of Rehabilitation-participation (USERParticipation) and the Patient-Reported-Outcome-Measurement-System (PROMIS) ability and PROMIS satisfaction with participation in social roles, and the EuroQol-5L-5D and PROMIS-10 Global Health. Regression analyses, controlling for demographic and condition-related factors, were performed. RESULTS: Respondents (n = 563) had a mean age of 56.5 (standard deviation (SD) 12.7) years. The largest diagnostic groups were chronic pain disorder and brain injury. In addition to demographic and condition-related factors, self-regulation subscales explained 0-15% of the variance in participation outcome scores, and 0-22% of the variance in HRQoL outcome scores. Self-regulation subscales explained up to 22% of the variance in satisfaction subscales of participation (USER-Participation and PROMIS) and the mental health subscale of the PROMIS-10. Self-regulation subscales explained up to 11% of the restriction and frequency subscales of participation (USER-Participation) and the physical health subscale of the PROMIS-10. CONCLUSION: Self-regulation is more strongly associated with outcomes such as satisfaction with participation and mental health compared with outcomes such as restrictions in participation and physical health.