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.

Australian arm of the International Spinal Cord Injury (Aus-InSCI) community survey: 1. population-based design, methodology and cohort profile.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To describe design and methods of Australian arm of International Spinal Cord Injury (Aus-InSCI) community survey, reporting on participation rates, potential non-response bias and cohort characteristics. SETTING: Survey of community-dwelling people with SCI at least 12 months post-injury, recruited between March 2018 and January 2019, from state-wide SCI services, a government insurance agency and not-for-profit consumer organisations across four Australian states. METHODS: The Aus-InSCI survey combined data for people with SCI from nine custodians, using secure data-linkage processes, to create a population-based, anonymised dataset. The Aus-InSCI questionnaire comprised 193 questions. Eligibility, response status and participation rates were calculated. Descriptive statistics depict participant characteristics. Logistic regression models were developed for probability of participation, and inverse probability weights generated to assess potential non-response bias. RESULTS: 1579 adults with SCI were recruited, a cooperation rate of 29.4%. Participants were predominantly male (73%), with 50% married. Mean age was 57 years (range 19-94) and average time post-injury 17 years (range 1-73). Paraplegia (61%) and incomplete lesions (68%) were most common. Males were more likely than females to have traumatic injuries (p < 0.0001) and complete lesions (p = 0.0002), and younger age-groups were more likely to have traumatic injuries and tetraplegia (p < 0.0001). Potential non-response bias evaluated using selected outcomes was found to be negligible in the Aus-InSCI cohort. CONCLUSIONS: The Aus-InSCI survey made efforts to maximise coverage, avoid recruitment bias and address non-response bias. The distributed, linked and coded (re-identifiable at each custodian level) 'virtual quasi-registry' data model supports systematic cross-sectional and longitudinal research.

Does the socioeconomic status predict health service utilization in persons with enhanced health care needs? Results from a population-based survey in persons with spinal cord lesions from Switzerland.

BACKGROUND: Evidence suggests that the socioeconomic status (SES) affects individuals' health service utilization. Spinal cord injury is a condition that often leads to physical impairments and enhanced health care needs. It therefore presents an informative and yet under-researched case in point to investigate social inequalities in health service utilization. This study aims to describe associations between SES and health service utilization in adults with spinal cord injury from Switzerland. METHODS: We use cross-sectional data from 1,294 participants of the Swiss Spinal Cord Injury Cohort Study community survey 2017. SES was operationalized with education, household income, perceived financial hardship, subjective status, and granting of supplementary financial benefits. Health service utilization was assessed with information on visits to 13 different health care providers and four health care institutions (inpatient stays, outpatient clinics, emergency departments, specialized spinal cord centers) during the past 12 months. The dichotomized outcomes on service utilization (visited vs. not visited) were regressed on SES indicators, including adjustments for sociodemographics, lesion characteristics, and health status. RESULTS: Persons with higher SES reported higher likelihood for specialist, dentist, and dental hygienist visits and reported utilizing a larger number of different care providers. Further, specific SES indicators were associated with certain care provider visits (i.e., higher education and subjective status: higher odds for pharmacist visits; higher income: higher odds for natural healer visits; higher subjective status: higher odds for chiropractor visits; supplementary benefit granting: higher odds for general practitioner and home care service visits). We found statistically non-significant trends towards lower likelihood for inpatient stays, outpatient clinic and emergency department visits and enhanced likelihood for specialized spinal cord-center visits in higher SES groups. CONCLUSIONS: This study generally supports the claim that basic health care provision is guaranteed for all patients with spinal cord injury in Switzerland, independently of their SES. However, social inequalities were still observed for the utilization of specific providers, such as oral health care providers. Given that oral health is key for health maintenance in persons with spinal cord injury, specific interventions to enhance regular dental check-ups in lower SES groups are highly recommended.

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.

Are Positive Psychology Interventions Efficacious in Chronic Pain Treatment? A Systematic Review and Meta-Analysis of Randomized Controlled Trials.

OBJECTIVE: Although positive psychology interventions (PPIs) are increasingly popular in chronic pain treatment their efficacy is still unclear. The objective is to summarize evidence on the effect of PPIs on pain, physical functioning, and emotional functioning in adults with chronic pain. METHODS: Four electronic databases and additional references were searched for randomized controlled trials (RCTs) published between 1990 and 2020. Findings from included studies were qualitatively and quantitatively synthesized, and study quality was assessed for risk of bias. A random effects meta-analysis model was applied for outcomes with more than four findings. RESULTS: Of 16 included RCTs, almost half delivered PPIs as self-help online interventions, and half conducted guided face-to-face interventions which lasted mostly eight weeks. Results from meta-analysis showed beneficial effects of PPIs compared to the control group on pain intensity and emotional functioning (i.e., less depressive symptoms, pain catastrophizing, negative affect; more positive affect) post-intervention. At 3-month follow-up, beneficial effects were maintained for depressive symptoms and positive and negative affect, but not for pain catastrophizing. However, the evidence on the long-term efficacy of PPIs and the efficacy of PPIs on physical functioning remains limited. CONCLUSIONS: This review supports the notion that PPIs are beneficial to chronic pain treatment, although further, high quality research is needed to support this conclusion.

Who is at Risk of Loneliness? A Cross-sectional Recursive Partitioning Approach in a Population-based Cohort of Persons With Spinal Cord Injury.

OBJECTIVE: To develop a more thorough understanding of the risk factors for loneliness in persons with a physical impairment, using a population-based sample of persons with spinal cord injury (SCI), based on regression modeling and a recursive partitioning approach. DESIGN: Cross-sectional, observational cohort. SETTING: Community, Switzerland. PARTICIPANTS: Community-dwelling persons with spinal cord injury (N=1283) 16 years or older. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Loneliness was assessed using a modified version of the UCLA Three-Item Loneliness Scale. RESULTS: Those with the most disadvantaged socioeconomic characteristics in terms of education, income, subjective social position, employment status, and financial hardship demonstrated the highest risk for loneliness. Of the sociodemographic characteristics, only age had an association with loneliness, whereby persons aged 31-45 had the highest propensity for experiencing loneliness. We also saw that those with higher lesion levels and less functional independence were associated with higher levels of loneliness. In conditional inference tree analysis subjective social position, financial hardship, and functional independence had the highest discriminative power, with nationality and living arrangement having a less important role. CONCLUSIONS: Our findings highlight the vulnerability of persons with SCI with unfavorable socioeconomic status to loneliness. Furthermore, our findings show that persons who are more constrained because of functional limitations may face restrictions to social participation and therefore be at a higher risk of loneliness. This population-based evidence contributes to the better targeting of services aimed at alleviating loneliness for persons with a lower socioeconomic position and those with more functional limitations in everyday life.

Pain Trajectories During Initial Rehabilitation After Spinal Cord Injury: Do Psychosocial Resources and Mental Health Predict Trajectories?

OBJECTIVE: To identify classes of pain trajectories during initial rehabilitation after spinal cord injury (SCI) and to investigate whether psychosocial resources and mental health predict pain trajectory membership. DESIGN: Longitudinal analysis with prospective data from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study. SETTING: Initial rehabilitation in 4 SCI specialized rehabilitation centers in Switzerland. PARTICIPANTS: Individuals aged ≥16 years with newly diagnosed traumatic or nontraumatic SCI admitted to initial rehabilitation between August 2015 and April 2021 (N=343). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Pain intensity was assessed at 4 time points (4, 12, and 24 weeks after SCI and at discharge) with 1 item of the International SCI Basic Pain Dataset asking participants to rate their average pain intensity experienced during the past week on a 0-10 numeric rating scale. RESULTS: Four pain trajectories were identified by latent process mixed modeling: stable moderate pain (N=170, 49.6%), decreasing pain (N=36, 10.5%), increasing pain (N=16, 4.7%), and stable low pain (N=121, 35.3%). Participants with higher optimism (ß = 0.12; 95% confidence interval [CI], 0.03-0.22), more social support (ß = 0.30; 95% CI, 0.01-0.59), and less anxiety (ß = -0.13; 95% CI, -0.24 to -0.01) 1 month after injury were more likely to be classified to the decreasing pain than the stable moderate pain trajectory in adjusted analyses. Self-efficacy, purpose in life, and depressive symptoms did not predict this allocation when adjusting for sociodemographics, SCI characteristics, and pain medication. CONCLUSIONS: These findings highlight the importance of psychosocial resources and mental health for early pain trajectories after SCI onset and support the notion that strengthening psychosocial resources and mental health early after SCI could present promising targets in pain management.

Untangling the role of social relationships in the association between caregiver burden and caregiver health: an observational study exploring three coping models of the stress process paradigm.

BACKGROUND: Caregivers health is often at risk due to the detrimental effects of caregiver burden. It is therefore vital to identify strategies and resources, which ensure the safeguarding of caregivers' health, whilst also enabling caregivers to continue providing high quality long-term care to care-receivers. The objective of this study is therefore to examine the moderating and mediating role of different social relationship constructs (social networks, social support, relationship quality, and loneliness) in the relationship between subjective caregiver burden and health, by exploring different coping models of the stress process paradigm, namely the stress buffering, social deterioration and counteractive models. METHODS: Longitudinal survey data from 133 couples of caregiving romantic partners and persons with spinal cord injury, living in Switzerland were used. We employed multivariable regression analysis with the inclusion of interaction terms to explore moderation effects of social relationships (i.e. stress buffering model), and path analysis to explore mediation effects (i.e. social deterioration vs. counteractive model) of social relationships on the association between subjective caregiver burden and health. Health was operationalised using the following outcomes: mental health, vitality, bodily pain and general health. RESULTS: Social support and relationship quality were found to buffer the negative effects of subjective caregiver burden on mental health. Mediating effects of social relationships were observed for mental health (indirect effect -0.25, -0.42- -0.08) and vitality (indirect effect -0.20, -0.37- -0.03), providing support for the deterioration model. Loneliness was found to be a particularly important construct on the pathway from caregiver burden to health. CONCLUSION: Our study highlights the potential of social support and relationship quality to override the negative consequences of caregiver burden on mental health and vitality. Our evidence thus supports the advance of interventions that seek to improve qualitative aspects of social relationships, especially in caregivers experiencing a high subjective caregiver burden.

Epidemiology of spinal cord injury in China: A systematic review of the chinese and english literature.

STUDY DESIGN: Systematic review. OBJECTIVES: We aimed to provide a comprehensive overview of the English and Chinese literature reporting epidemiological data on spinal cord injury (SCI) in China. METHODS: 3 English and 3 Chinese language electronic databases were searched from the earliest record to 15 March 2020. Sociodemographic characteristics, incidence rates, etiology and lesion characteristics, in-hospital mortality, and secondary health conditions and complications were extracted from included reports. RESULTS: A total of 51 studies were included, 32 in the Chinese language. Forty-seven studies were based on hospital records. Mean age of incident cases ranged from 34 to 55 years and male-to-female ratios ranged from 0.35:1 to 15.3:1. SCI incidence varied from 14.6 to 60.6 per million. Thirty-five studies reported only on traumatic SCI with traffic accidents, high falls, low falls and being hit by objects being the most common causes. Specific causes for non-traumatic SCI were poorly reported. Proportions with tetraplegia and complete injury ranged from 37.4% to 82.0% and 14.1% to 73.9%, respectively. Reported in-hospital mortality attributed to SCI varied from 1.1% to 18.4%. Leading cause of in-hospital mortality for acute SCI was respiratory problems; respiratory problems, urinary tract infections and pressure sores were the most common complications. CONCLUSION: Epidemiological data on SCI in China are only available for a limited number of provinces and mostly outdated. Updated data on incidence with accurate geographical information and etiology across all Chinese provinces are needed for targeted implementation of preventive strategies. Research on community outcomes needs to be developed in China.

Internal consistency and convergent validity of the International Spinal Cord Injury Quality of Life Basic Data Set at discharge from first rehabilitation.

STUDY DESIGN: This study is a cross-sectional analysis using data from the Swiss Spinal Cord Injury Cohort Study. OBJECTIVES: To examine internal consistency and convergent validity of the International Spinal Cord Injury Quality of Life Basic Data Set (QoL-BDS) at discharge from first inpatient rehabilitation. SETTING: The study was performed at four rehabilitation centers in Switzerland. METHODS: Participants were Swiss residents aged over 16 years newly diagnosed with traumatic or non-traumatic spinal cord injury (SCI). Measures included the QoL-BDS, World Health Organization Quality of Life (WHOQOL) items, Hospital Anxiety and Depression Scale (HADS), and Spinal Cord Independence Measure III (SCIM). RESULTS: A total of 495 participants were included. In all, 57% had a traumatic SCI, 71.1% a motor complete SCI, and 33.3% had tetraplegia. Mean age was 53 (SD = 16.4) years and 68% were male. No floor or ceiling effects were found. Inter-correlations were strong (0.73-0.80) and Cronbach's alpha was good (0.88). QoL-BDS mean scores were 6.4 (SD = 2.2) for life satisfaction, 5.8 (SD = 2.4) for physical health, 6.9 (SD = 2.4) for psychological health, and 6.4 (SD = 2.1) for total QoL. Correlations with reference measures were strongest for QoL-BDS total and WHOQOL general quality of life (r = 0.67), QoL-BDS physical health and WHOQOL health and daily activities (r = 0.64 and 0.53), and QoL-BDS psychological health and HADS depression and anxiety (r = -0.64 and -0.69). SCIM correlated weakly with all QoL-BDS items. CONCLUSIONS: The QoL-BDS revealed no floor or ceiling effects and demonstrated good internal consistency and convergent validity in individuals with SCI assessed at discharge from first rehabilitation. This study supports the clinical routine use of the QoL-BDS.

Pathways to loneliness: a mediation analysis investigating the social gradient of loneliness in persons with disabilities in Switzerland.

BACKGROUND: The experience of loneliness can have drastic consequences for health and quality of life. Given that loneliness is highly prevalent in persons with physical disabilities and that loneliness more profoundly affects persons of low socioeconomic status, more evidence is required in order to understand the mechanisms determining loneliness in this population. The objective of this study is therefore to investigate the potential pathways through which socioeconomic status influences loneliness in persons with spinal cord injury. METHODS: Mediation analysis utilising structural equation models and bias corrected and accelerated confidence intervals were used in order to test the mediation effects of health status, functioning, participation, social support and self-efficacy on the association between socioeconomic status and loneliness in persons with spinal cord injury. A latent construct was created for socioeconomic status with the indicators education, household income, financial hardship, subjective social status and engagement in paid work. RESULTS: This study found evidence to support the mediating role of psychosocial resources and of secondary health conditions in the association between socioeconomic status and loneliness. The study demonstrated robust associations between socioeconomic status and all potential mediators, whereby higher socioeconomic status was associated with better health, participation and psychosocial resources, however, not all potential mediators were associated with loneliness. The serial mediation model explained the interplay between socioeconomic status, mediators on different levels, and loneliness. For example, emotional support and self-efficacy were both positively associated with fewer restrictions to participation (0.08 (CI: 0.05, 0.12); 0.29 (CI: 0.24, 0.36) respectively), and fewer restrictions to participation were found to be a result of improved functional independence and fewer secondary health conditions (0.23 (CI: 0.15, 0.39); - 0.29 (CI: - 0.36, - 0.20) respectively). CONCLUSIONS: Our findings highlight the vulnerability of persons with low socioeconomic status to loneliness in persons with spinal cord injury and identified potential mediating factors, such as health, functioning, participation and psychosocial resources, in the association between socioeconomic status and loneliness. This population-based evidence suggests potential targets of interventions on the pathway to loneliness, through which socioeconomic status influences loneliness. The complexity of the model shows the need for comprehensive interprofessional rehabilitation to identify and support people with lower socioeconomic status and concomitant risk factors for loneliness.

Psychosocial resources and chronic pain in individuals with spinal cord injury: evidence from the second Swiss national community survey.

STUDY DESIGN: Cross-sectional. OBJECTIVE: To investigate the associations of a set of psychosocial resources with pain and pain-related factors in individuals with spinal cord injury (SCI) and chronic pain. SETTING: Community, Switzerland. METHODS: Data from 1,064 individuals with chronic pain who participated in the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017) were analyzed. Multiple linear regression modeling was performed to test the hypotheses that higher levels of psychosocial resources (self-efficacy, self-esteem, purpose in life, optimism, hope, social support, sense of belonging) are negatively associated with pain intensity, pain interference and depressive symptoms. RESULTS: Higher self-esteem, optimism and hope were related to less pain interference and all psychosocial resources under study were negatively associated with depressive symptoms in final models. However, neither of the psychosocial resources was related to pain intensity when models were adjusted for pain interference and depressive symptoms. CONCLUSIONS: These findings strengthen the evidence that psychosocial resources can have an impact on pain interference and depressive symptoms as pain-related factors, and support the notion that psychosocial resources might be promising targets for pain interventions in individuals with SCI.

Labor market participation of individuals with spinal cord injury living in Switzerland: determinants of between-person differences and counterfactual evaluation of their instrumental value for policy.

STUDY DESIGN: Longitudinal, population-based survey. OBJECTIVE: To examine determinants of between-person differences in labor market participation of individuals with spinal cord injury (SCI) living in Switzerland and their potential importance for policy. SETTING: Community. METHODS: Longitudinal information on labor market participation (i.e., paid work or not) was obtained from 1198 and 1035 individuals of working-age participating in the 2012 and 2017 SwiSCI community survey, respectively. Determinants of between-person variation in labor market participation were examined using mixed effects logistic regression, controlling for within-person variation. Employment rates were predicted using counterfactual data for modifiable determinants. RESULTS: The employment rate was 56% for the 2012 and 61% for the 2017 survey. Labor market participation was affected mostly by static (sex, nationality, SCI severity), temporal (age), dynamic (education level, functional independence, chronic pain), and policy-related (general pension, disability pension level) determinants. Counterfactual (what-if) predictions indicated the highest improvement of employment rates for strategies that increase functional independence (up to 6% increase), foster education (5%), reduce chronic pain (2%), or promote a shift to partial disability pensions (15%). CONCLUSIONS: Between-person variation in labor market participation of persons with SCI is influenced by various temporal, static, dynamic, and policy-related determinants. Our results suggest that policy strategies aimed at enhancing the employment rate of the Swiss SCI population may particularly invest in programs promoting functional independence, education, and partial pension levels that are more adequate for ensuring sustainable employment.

Methodology and study population of the second Swiss national community survey of functioning after spinal cord injury.

STUDY DESIGN: Descriptive study of the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017) conducted between 03/2017 and 03/2018. OBJECTIVES: To describe the methodology, recruitment results, characteristics of participants and non-participants, and non-response of the Survey 2017. SETTING: Community. METHODS: Description of the sampling strategy and sampling frame. Recruitment results and characteristics of participants and non-participants of the two Survey 2017 questionnaire modules were analyzed using descriptive statistics. Determinants of survey participation were examined using multivariable logistic regression, and the impact of non-response bias on survey results was evaluated using inverse-probability weighting. RESULTS: Out of 3959 persons who met the eligibility criteria, 1530 responded to module 1 (response rate 38.6%) and 1294 to module 2 (response rate 32.7%) of the Survey 2017. Of the 4493 invited persons, 1549 had participated in the first SwiSCI community survey conducted in 2012/2013. Of these, 1332 were invited to the Survey 2017 and 761 participated in module 1 (response rate 58.9%) and 685 in module 2 (response rate 53.1%). The majority of module 1 participants were male (71.2%, 95% CI: 68.9, 73.5), with a median age of 57 (IQR: 46.0, 67.0) years and incomplete paraplegia (41.9%, 95% CI: 39.3, 44.5). Survey non-response was higher in the oldest age group, among females, and those with tetraplegia. CONCLUSIONS: The design of the Survey 2017 was successful in recruiting a substantial proportion of the SCI source population in Switzerland. To counteract survey non-response, survey weights may be applied to subsequent analyses. SPONSORSHIP: none.

Detecting subgroups in social participation among individuals living with spinal cord injury: a longitudinal analysis of community survey data.

STUDY DESIGN: Longitudinal community survey. OBJECTIVES: To determine subgroups in social participation of individuals living with spinal cord injury (SCI). SETTING: Community. METHODS: Data were collected in 2012 and 2017 as part of the community survey of the Swiss Spinal Cord Injury cohort. Participation was assessed using the 33-item Utrecht Scale of Evaluation of Rehabilitation-Participation evaluating frequency of, restrictions in and satisfaction with productive, leisure, and social activities. Linear mixed-effects model trees were used to distinguish subgroups in participation associated with sociodemographic and lesion characteristics. RESULTS: In all, 3079 observations were used for the analysis, of which 1549 originated from Survey 2012, 1530 from Survey 2017, and 761 from both surveys. Participants were mostly male (2012: 71.5%; 2017: 71.2%), aged on average 50 years (2012: 52.3; 2017: 56.5), with an incomplete paraplegia (2012: 37.5%; 2017: 41.8%) of traumatic origin (2012: 84.7%; 2017: 79.3%). There was limited within-person variation in participation over the 5-year period. Participation varied with age, SCI severity, education, financial strain, number of self-reported health conditions (SHCs), and disability pension level. Among modifiable parameters, the number of SHCs and disability pension level emerged as the most frequent partitioning variables, while education was most informative for participation in productive, leisure, and social activities. CONCLUSIONS: Long-term rehabilitation management and clinical practice should target people most prone to decreased participation in major life domains. Our study indicates that the alleviation of SHCs, engagement in further education, or adjusting disability pension level are promising areas to improve participation of persons living with SCI.

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.

Does engagement in productive activities affect mental health and well-being in older adults with a chronic physical disability? Observational evidence from a Swiss cohort study.

Objectives: To investigate type and load of productive activities as potential determinants of mental health and well-being in elderly persons with a physical disability.Methods: We used data from a Swiss population-based sample of 314 adults at or past the legal retirement age (65 for men, 64 for women) who live with a chronic physical disability, spinal cord injury. Engagement in housework, volunteering, and paid work were dichotomized (no; some engagement) and three groups of engagement types were constructed (none; housework only; volunteering and/or paid work). Load of engagement was appraised using a sumscore on the overall frequency as well as the total number of performed activities. We used regression modelling to draw causal inference regarding the associations of type and load of engagement with general mental health (Mental Health Inventory, SF-36), self-reported depression (Self-Administered Comorbidity Questionnaire, SCQ), and well-being (WHOQoL-BREF items).Results: Engagement in volunteering was positively related to well-being. Persons engaged only in housework reported better well-being and lower prevalence of depression than non-engaged persons, however, persons engaged in volunteering or paid work reported the highest well-being and the lowest prevalence of depression. The productivity sumscore tertiles and the number of performed activities were both positively linked to well-being and negatively linked to depression, while their association with general mental health was less pronounced.Conclusion: Strengthening the engagement in productive activities among the elderly with a chronic physical disability is suggested as a promising strategy to promote well-being and reduce the prevalence of depression.

Social inequalities in the burden of care: a dyadic analysis in the caregiving partners of persons with a physical disability.

BACKGROUND: Socioeconomic position (SEP) is an important contextual factor in the Stress Process Model of caregiving. However, the basic assumption that low SEP is associated with greater caregiver burden has so far lacked empirical support. The objective of this study was to investigate social inequalities in the caregiver burden among caregiving partners of persons with a physical disability, i.e., spinal cord injury (SCI), applying a dyadic approach. More specifically, we investigated 1) the association of the caregivers' SEP with caregiver burden ('actor effect'); 2) the association of the care-receivers' SEP with caregiver burden ('partner effect'), and 3) potential mediators of the association between SEP and caregiver burden. METHODS: Cross-sectional survey data from 118 couples of persons with SCI and their partners living in Switzerland was used. We firstly employed logistic regression to investigate the actor and partner effects of SEP on objective (hours of caregiving) and subjective caregiver burden (Zarit Burden Interview). We additionally used structural equation modelling to explore whether unfulfilled support needs, psychosocial resources and the care-receivers health status mediated the association between SEP and caregiver burden. SEP was operationalized by household income, education, subjective social position, financial strain and home ownership. RESULTS: We observed a consistent trend towards higher objective and subjective burden in lower SEP groups. Caregivers with higher subjective social positon and home ownership indicated lower subjective burden, and caregivers with higher education and absence of financial strain reported lower objective burden. Further evidence suggested a partner effect of SEP on caregiver burden, whereby objective caregiver burden was reduced in couples where the care-receiver had a higher educational level. The negative association between SEP and subjective burden was partially mediated by the unfulfilled support needs and deprived psychological resources of the caregiver, and the poor health status of the care-receiver. Similar mediation effects were not supported for objective burden. CONCLUSIONS: Our study, in the context of SCI, provides support for the contextual role of SEP in the Stress Process Model of caregiving. To reduce subjective caregiver burden, policy programs may target the strengthening of psychosocial resources, or the improvement of access to support services for caregivers with low SEP.

Subjective Caregiver Burden and Caregiver Satisfaction: The Role of Partner Relationship Quality and Reciprocity.

OBJECTIVE: To explore the effect of relationship quality and reciprocity in partnerships on subjective caregiver burden and caregiver satisfaction in partners of persons with a severe physical disability (spinal cord injury). DESIGN: Cross-sectional, observational. SETTING: Community setting. PARTICIPANTS: Caregiving partners of persons with spinal cord injury (N=118). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Subjective caregiver burden measured by the Zarit Burden Interview (short form) and caregiver satisfaction measured by a single item on feelings of satisfaction resulting from the caregiver role. RESULTS: Caregiving partners who rated their relationship quality as high encountered less subjective caregiver burden (ß=-1.10; 95% confidence interval [CI], -1.47 to -0.72; P<.001) and more caregiver satisfaction (odds ratio [OR], 1.18; 95% CI, 1.01-1.45; P=.049). These associations persisted even after controlling for sociodemographic characteristics, lesion severity of the care receiver, and objective caregiver burden. Partners who indicated high reciprocity in their relationship to the care receiver indicated less subjective caregiver burden and more caregiver satisfaction when relationship quality was excluded from the final models; however, the effect of reciprocity on subjective burden (ß=-.38; 95% CI, -3.71 to 2.95; P=.82) and caregiver satisfaction (OR, 1.21; 95% CI, 0.28-5.22; P=.80) disappeared when including relationship quality. CONCLUSIONS: Results highlight the importance of relationship quality as a target for couple interventions aimed at reducing subjective caregiver burden and increasing satisfaction in the caregiving role.

Social relationships, mental health and wellbeing in physical disability: a systematic review.

BACKGROUND: Research has consistently found that favourable exchange with one's proximal social environment has positive effects on both mental health and wellbeing. Adults with physical disabilities may have fewer opportunities of favourable exchange, and therefore the effects on mental health and wellbeing may be less advantageous. The aim of this study is to systematically review quantitative studies exploring associations of social relationships with mental health and wellbeing in persons with physical disabilities. METHODS: The databases PubMed, PsycINFO and Scopus were searched for relevant studies published between 1995 and 2016. Data was extracted on study and participants' characteristics, independent and dependent variables, used measures and effects sizes of associations between social relationships and mental health or wellbeing. A narrative review was performed to synthesize findings along the constructs social support, social networks, negative social interactions, family functioning and relationship quality. RESULTS: Of the 63 included studies, 47 were cross-sectional and 16 longitudinal. Most studies included a measure of social support (n = 58), while other concepts were less often studied (social networks n = 6; negative social interaction n = 3; family functioning n = 2; relationship quality n = 1). Over half of studies included depression as outcome (n = 33), followed by wellbeing (n = 14), composite mental health measures (n = 10), anxiety (n = 8), psychological distress (n = 7), posttraumatic stress disorder (n = 3), and hopelessness (n = 1). Although trends for associations of social support with mental health and wellbeing were consistent, around a quarter of studies failed to report significant associations. Social networks were related to depression, but not to other mental health or wellbeing measures. Family functioning, negative social interactions and relationship quality showed consistent associations with mental health and wellbeing, however, only few studies were available. CONCLUSIONS: This review indicates that social relationships play an important role in mental health and wellbeing in persons with disabilities, although findings are less consistent than in general populations and strength of associations vary between constructs. Integrating persons with disabilities into social networks seems not sufficient and rehabilitation professionals together with affected persons and their peers should ensure that high quality relationships and tailored support are available.