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.

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.

Predictors of quality of life of individuals living in Brazil with spinal cord injury/disease.

STUDY DESIGN: A cross-sectional, descriptive study. OBJECTIVES: To investigate the demographic, clinical behavioral, and rehabilitation predictors of the quality of life (QoL) of people with spinal cord injury/disease (SCI/D) in a middle-income country. METHOD: Ninety-five participants living in the community were evaluated with the following instruments: World Health Organization Quality of Life - Bref; International SCI Core DataSet; Clinical Interview; Spinal Cord Secondary Conditions Scale and Patient Health Questionnaire; Numerical Pain Intensity Scale; Short-Form 12 Health Survey - Item 8 (how much pain hinders activities); Patient Health Questionnaire 2, Numerical Fatigue Scale. Data were analyzed via Spearman correlation, univariate analysis, and multiple regression to explain the effects associated with quality-of-life predictors. RESULTS: The main factors that decreased quality of life were fatigue (by 11.5%), depression (by 5.5-12.8%), pain (by 1.3 in total life quality, in the physical domain by 8.6-9.6%), sores (15.6% in the physical domain only). The practice of sports increased the total quality of life by 14.4%, in the physical domain by 11.9%, in the psychological domain by 17.2%, and in the social domain by 23.7%. CONCLUSIONS: Fatigue, risk of depression, pain, and the presence of sores are predictors of poor quality of life, and sports are a predictor of a better quality of life, for people with spinal cord injury. Multidisciplinary rehabilitation, in addition to policies, to increase accessibility and social inclusion, and incentives or subsidies for the practice of sports could improve QoL following SCI/D.

Factors influencing decisions about neurogenic bladder and bowel surgeries among veterans and civilians with spinal cord injury.

OBJECTIVE: This study investigated factors influencing surgical decision-making (DM) to treat neurogenic bladder and bowel (NBB) dysfunction for veterans and civilians with spinal cord injury (SCI) in the United States (US). DESIGN: Semi-structured interviews complemented by survey measures. SETTING: Community-dwelling participants who received treatment at a major Midwestern US medical system, a nearby Veterans Affairs (VA) facility, and other VA sites around the US. PARTICIPANTS: Eighteen participants with SCI who underwent surgeries; completed semi-structured interviews and survey measures. INTERVENTIONS: Not applicable. OUTCOMES MEASURES: Semi-structured interviews were coded to reflect factors, DM enactment, and outcomes, including surgery satisfaction and quality of life (QOL). Quantitative measures included COMRADE, Ways of Coping Questionnaire, Bladder and Bowel Treatment Inventory, PROMIS Global Health and Cognitive Abilities scales, and SCI-QOL Bladder and Bowel short form. RESULTS: Themes identified about factors influencing DM included: recurrent symptoms and complications; balancing dissatisfaction with NBB management against surgery risks; achieving independence and life style adjustments; participant's driven solutions; support and guidance and trust in doctors; and access and barriers to DM. DM enactment varied across surgeries and individuals, revealing no clear patterns. Most participants were satisfied with the surgery outcomes. Some differences in demographics were observed between veterans and civilians. CONCLUSIONS: We have attempted to illustrate the process of NBB DM as individuals move from factors to enactment to outcomes. Attending to the complexity of the DM process through careful listening and clear communication will allow clinicians to better assist patients in making surgical decisions about NBB management.

Factors enabling comorbidities and secondary conditions in older adults with spinal cord injury.

OBJECTIVE: To examine the role of personal, social, and environmental factors predicting comorbidities and secondary conditions among older adults with spinal cord injury (SCI). DESIGN: Cross-sectional study utilizing survey methods were used to collect the data analyzed with two distinct general linear models. SETTING: Community-dwelling participants who resided in rural and urban areas. PARTICIPANTS: One hundred and eighty-three (183) participants with SCI ages 45 and over at least five years post injury. INTERVENTIONS: Not applicable. MEASURES: Spinal Cord Injury Secondary Conditions Scale (SCI-SCS); Comorbidities Questionnaire; Spinal Cord Injury Functional Index Assistive Technology (SCI-FI/AT) Basic - Mobility; Spinal Cord Injury Quality of Life (SCI-QOL) Satisfaction with Social Roles and Activities Scale (SSRA); Cohen's Social Network-Social Integration Index, the Medical Outcomes Study (MOS) Social Support Emotional/Informational Support Scale, and the Facilitators and Barriers Survey for Mobility (FABS-Mv2). Questions were also asked from the Behavioral Risk Factor Surveillance System (BRFSS). RESULTS: Common predictors of comorbidities and secondary conditions included age, basic mobility, primary health care payer and parking limitations. An interaction between parking and neurological classification was observed for comorbidities. Neurological classification and employment were significantly associated with comorbidities while for secondary conditions, sex, years since injury, education, satisfaction with social roles and the home environment were critical factors. CONCLUSIONS: Our study shows the effects of demographic and injury factors, physical functioning, satisfaction with social roles, access to home environment adaptations and health resources in predicting comorbidities and secondary conditions among older adults with SCI.

Arbiters of Time: The Experience of Adults Aging with Spinal Cord Injury.

Time is a fundamental component of our lives. It is both objective, a structure outside of ourselves, and subjective, an element that is relative to the life we live and how we experience it. The disabled body must come to terms with time to understand the future impact of the injury and its progression, as well as how the injury will impose a new more accelerated aging process in the body, resulting in a compressed lifespan. The body also challenges time's control of the body. This paper extends the literature on the study of time to the experience of adults aging with a spinal cord injury (SCI). Drawing from interviews conducted with adults with long-term SCI, it examines how their narratives about aging and the proactive management of their lives reflect their orientation toward and anticipation of the future. Recognizing that the spoken word often carries a multiplicity of meanings, it considers what participants' words might imply about their engagement with time. The results of this study show that the process of aging is characterized by uncertainty and the expectations of functional and health decline, requiring a sense of urgency and vigilance in the face of the uncertain course of aging with SCI. Participants understood that their lifespan was compressed due to the physiological impact of accelerated aging. Knowledge of this compression made time a scarce resource. Yet, despite it being the arbiters of their futures, so too were they the arbiters of time.

A Study Protocol for a Multisite Randomized Controlled Trial of an Intervention to Improve Outcomes After Spinal Cord Injury.

Background: The consequences of spinal cord injury (SCI) can place significant demands on an individual's coping mechanisms. Interventions to promote psychological adjustment and coping are often included in inpatient rehabilitation programs; however, following discharge, many individuals with SCI do not receive ongoing counseling or education about psychological adjustment to disability. Effective postacute treatment models are needed to help individuals with SCI build skills that help them adapt to the stresses associated with a chronic physical disability, alleviate the consequences of anxiety and depression, and enhance subjective well-being. Objectives: To describe the protocol for a randomized clinical trial (RCT) of a 6-week intervention designed to improve psychosocial outcomes after SCI. Methods: To test efficacy and replicability of the intervention, we designed a three-arm, multisite RCT with assessments conducted at six time points. Our primary hypothesis is that participants in the Group arm will report greater improvements in psychosocial outcomes than participants who complete the intervention individually via video (Individual arm) or those who do not receive the intervention (Control arm). We also hypothesize that participants in the Group arm will maintain greater improvements in psychosocial outcomes longer than those in the individual or control arms. Conclusion: Results of the RCT will be presented and published to professionals and consumers, and intervention training and materials will be made available upon request.

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.

A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS).

STUDY DESIGN: Mixed methods inquiry using cognitive interviews and thematic content analysis. OBJECTIVES: Cross-validation of the concept of quality of life (QoL) and of the International Spinal Cord Injury Quality of Life Basic DataSet (SCI QoL-BDS) items across five sites in four countries: United States, Australia, Brazil, and the Netherlands. Analysis aimed to uncover patterns, differences, and similarities suggesting conceptual equivalence for overall QoL and the three SCI QoL-BDS items. SETTING: International, community. METHODS: Semi-structured cognitive interviews with 51 participants across five sites and four countries. Participants with spinal cord injury/disease (SCI/D) completed the SCI QoL-BDS items and one additional question. Interviews were audio recorded and transcribed. Transcripts were coded using NVivo software. Coded data were analyzed using thematic content analysis. Seventeen themes were identified. Responses by sites were compared for conceptual equivalence. RESULTS: Across the five sites, equivalence in the conceptual meaning of QoL was found based on the frequent commonalities in terminology employed to describe it. Despite sample differences in terms of demographic and SCI characteristics, participants across all sites replied to the SCI QoL-BDS items in a similar way, suggesting good item equivalence. Qualitatively, the differences noted with respect to the use of themes for each question suggest some variability on how participants with SCI/D describe QoL. In spite of these contextual differences, there is a high degree of commonalty not explained by participants' demographic or injury/disease characteristics. CONCLUSIONS: The SCI QoL-BDS shows good cross-cultural validity among the international sites included in this study.

Physical Function Recovery Trajectories After Spinal Cord Injury.

OBJECTIVE: To explore trajectories of functional recovery that occur during the first 2 years after spinal cord injury (SCI). DESIGN: Observational cohort study. SETTING: Eight SCI Model System sites. PARTICIPANTS: A total of 479 adults with SCI completed 4 Spinal Cord Injury-Functional Index (SCI-FI) item banks within 4 months of injury and again at 2 weeks, 3, 6, 12, and 24 months after baseline assessment (N=479). INTERVENTION: None. MAIN OUTCOME MEASURES: SCI-FI Basic Mobility/Capacity (C), Fine Motor Function/C, Self-care/C, and Wheelchair Mobility/Assistive Technology (AT) item banks. RESULTS: Growth mixture modeling was used to identify groups with similar trajectory patterns. For the Basic Mobility/C and Wheelchair Mobility/AT domains, models specifying 2 trajectory groups were selected. For both domains, a majority class exhibited average functional levels and gradual improvement, primarily in the first 6 months. A smaller group of individuals made gradual improvements but had greater initial functional limitations. The Self Care/C domain exhibited a similar pattern; however, a third, small class emerged that exhibited substantial improvement in the first 6 months. Finally, for individuals with tetraplegia, trajectories of Fine Motor Function/C scores followed 2 patterns, with individuals reporting generally low initial scores and then making either modest or large improvements. In individual growth curve models, injury/demographic factors predicted initial functional levels but less so regarding rates of recovery. CONCLUSIONS: Trajectories of functional recovery followed a small number of change patterns, although variation around these patterns emerged. During the first 2 years after initial hospitalization, SCI-FI scores showed modest improvements; however, substantial improvements were noted for a small number of individuals with severe limitations in fine motor and self-care function. Future studies should further explore the personal, medical, and environmental characteristics that influence functional trajectories during these first 2 years and beyond.

Validation of the Spinal Cord Injury-Functional Index for Use in Community-Dwelling Individuals With SCI.

OBJECTIVE: To evaluate the psychometric properties of the Spinal Cord Injury-Functional Index (SCI-FI) instruments in a community-dwelling sample. DESIGN: Cross-sectional study. SETTING: Community setting. PARTICIPANTS: Individuals (N=269) recruited from 6 SCI Model Systems sites. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participants completed computer adaptive test and short form versions of 4 SCI-FI/Capacity (C) banks (ie, Ambulation, Basic Mobility, Fine Motor, Self-Care) and 1 SCI-FI/Assistive Technology (AT) bank (Wheelchair Mobility) at baseline and after 2 weeks. The Self-Report Functional Measure (SRFM) and the clinician-rated motor FIM were used to evaluate evidence of convergent validity. RESULTS: Pearson correlations, intraclass correlation coefficients, minimal detectable change, and Bland-Altman plots supported the test-retest reliability of the SCI-FI instruments. Correlations were large with the SRFM (.69-.89) and moderate-to-large for the FIM instrument (.44-.64), supporting convergent validity. Known-groups validity was demonstrated by a significant main effect of injury level on all instruments and a main effect of injury completeness on the SCI-FI/C instruments. A ceiling effect was detected for individuals with incomplete paraplegia on the Fine Motor/C and Self-Care/C Short Forms. CONCLUSION: Findings support the test-retest reliability, convergent validity, and known-groups validity of the SCI-FI/C instruments and the SCI-FI/AT Wheelchair Mobility instruments for use by community-dwelling individuals.

Prehospital care for traumatic spinal cord injury by first responders in 8 sub-Saharan African countries and 6 other low- and middle-income countries: A scoping review.

INTRODUCTION: Traumatic spinal cord injury (TSCI) constitutes a considerable portion of the global injury burden, disproportionately affecting low- and middle-income countries (LMICs). Prehospital care can address TSCI morbidity and mortality, but emergency medical services are lacking in LMICs. The current standard of prehospital care for TSCI in sub-Saharan Africa and other LMICs is unknown. METHODS: This review sought to describe the state of training and resources for prehospital TSCI management in sub-Saharan Africa and other LMICs. Articles published between 1 January 1995 and 1 March 2020 were identified using PMC, MEDLINE, and Scopus databases following PRISMA-ScR guidelines. Inclusion criteria spanned first responder training programs delivering prehospital care for TSCI. Two reviewers assessed full texts meeting inclusion criteria for quality using the Newcastle-Ottawa Scale and extracted relevant characteristics to assess trends in the state of prehospital TSCI care in sub-Saharan Africa and other LMICs. RESULTS: Of an initial 482 articles identified, 23 met inclusion criteria, of which ten were set in Africa, representing eight countries. C-spine immobilization precautions for suspected TSCI patients is the most prevalent prehospital TSCI intervention for and is in every LMIC first responder program reviewed, except one. Numerous first responder programs providing TSCI care operate without C-collar access (n = 13) and few teach full spinal immobilization (n = 5). Rapid transport is most frequently reported as the key mortality-reducing factor (n = 11). Despite more studies conducted in the Southeast Asia/Middle East (n = 13), prehospital TSCI studies in Africa are more geographically diverse, but responder courses are shorter, produce fewer professional responders, and have limited C-collar availability. DISCUSSION: Deficits in training and resources to manage TSCI highlights the need for large prospective trials evaluating alternative C-spine immobilization methods for TCSI that are more readily available across diverse LMIC environments and the importance of understanding resource variability to sustainably improve prehospital TSCI care.

Traumatic Spinal Cord Injury and Risk of Early and Late Onset Alzheimer's Disease and Related Dementia: Large Longitudinal Study.

OBJECTIVE: Traumatic spinal cord injury (TSCI) is a life altering event most often causing permanent physical disability. Little is known about the risk of developing Alzheimer disease and related dementia (ADRD) among middle-aged and older adults living with TSCI. Time to diagnosis of and adjusted hazard for ADRD was assessed. DESIGN: Cohort study. SETTING: Using 2007-2017 claims data from the Optum Clinformatics Data Mart, we identified adults (45+) with diagnosis of TSCI (n=7019). Adults without TSCI diagnosis were included as comparators (n=916,516). Using age, sex, race/ethnicity, cardiometabolic, psychological, and musculoskeletal chronic conditions, US Census division, and socioeconomic variables, we propensity score matched persons with and without TSCI (n=6083). Incidence estimates of ADRD were compared at 4 years of enrollment. Survival models were used to quantify unadjusted, fully adjusted, and propensity-matched unadjusted and adjusted hazard ratios (HRs) for incident ADRD. PARTICIPANTS: Adults with and without TSCI (N=6083). INTERVENTION: Not applicable. MAIN OUTCOMES MEASURES: Diagnosis of ADRD. RESULTS: Both middle-aged and older adults with TSCI had higher incident ADRD compared to those without TSCI (0.5% vs 0.2% and 11.7% vs 3.3% among 45-64 and 65+ y old unmatched cohorts, respectively) (0.5% vs 0.3% and 10.6% vs 6.2% among 45-64 and 65+ y old matched cohorts, respectively). Fully adjusted survival models indicated that adults with TSCI had a greater hazard for ADRD (among 45-64y old: unmatched HR: 3.19 [95% confidence interval, 95% CI, 2.30-4.44], matched HR: 1.93 [95% CI, 1.06-3.51]; among 65+ years old: unmatched HR: 1.90 [95% CI, 1.77-2.04], matched HR: 1.77 [1.55-2.02]). CONCLUSIONS: Adults with TSCI are at a heightened risk for ADRD. Improved clinical screening and early interventions aiming to preserve cognitive function are of paramount importance for this patient cohort.

Psychological Morbidity and Chronic Disease Among Adults With Traumatic Spinal Cord Injuries: A Longitudinal Cohort Study of Privately Insured Beneficiaries.

OBJECTIVE: To compare the longitudinal incidence of psychological morbidities and multimorbidity and estimates of chronic diseases among adults with spinal cord injuries (SCIs) as compared with adults without SCIs. METHODS: Privately insured beneficiaries who had medical coverage at any time between January 1, 2001, and December 31, 2017 were included if they had an International Classification of Diseases, Ninth Revision, Clinical Modification diagnostic code for a traumatic SCI (n=6,847). RESULTS: Adults with SCIs (n=6847) had a higher incidence of adjustment reaction (7.2% [n=493] vs 5.0% [n=42,862]), anxiety disorders (19.3% [n=1,322] vs 14.1% [n=120,872]), depressive disorders (29.3% [n=2,006] vs 9.3% [n=79,724]), alcohol dependence (2.4% [n=164] vs 1.0% [n=8,573]), drug dependence (2.3% [n=158] vs 0.8% [n=6,858]), psychogenic pain (1.0% [n=69] vs 0.2% [n=1,715]), dementia (6.5% [n=445] vs 1.5% [n=12,859]), insomnia (10.9% [n=746] vs 7.2% [n=61,722]), and psychological multimorbidity (37.4% [n=2,561] vs 23.9% [n=204,882]) as compared with adults without SCIs (n=857,245). The adjusted hazard ratios (HRs) of each psychological outcome were significantly higher for individuals with SCI and ranged from 1.18 (95% CI, 1.08-1.29) for anxiety disorders to 3.32 (95% CI, 1.93-5.71) for psychogenic pain. Adults with SCIs also had a significantly higher prevalence of all chronic diseases and chronic disease multimorbidity (51.1% vs 14.1%), except human immunodeficiency virus infection/AIDS. After propensity matching for age, education, race, sex, and chronic diseases (n=5884 matched pairs), there was still a significantly higher incidence of most psychological disorders and psychological multimorbidity among adults with SCIs. CONCLUSION: Adults with traumatic SCIs experienced an increased incidence of psychological morbidities and multimorbidity as compared with adults without SCIs. Clinical efforts are needed to improve mental health screening and targeted interventions to reduce the risk for psychological disease onset in the traumatic SCI population.

Narratives of long-term resilience: two cases of women aging with spinal cord injury.

INTRODUCTION: Spinal cord injury (SCI) is a life-changing event that drastically affects a person's sense of identity, ability to participate, and quality of life (QOL). Researchers studying the coping process have often focused on identifying maladaptive behaviors and barriers, and less on positive psychology approaches emphasizing individual strengths. More recently, positive psychology constructs, such as resilience, have received greater attention from SCI researchers. Early and ongoing recognition of resilience in patients with SCI may provide important information to clinicians about adjustment and long-term management. Our purpose is to document patterns and indicators of resilience, using a narrative approach, during various stages of adjustment following SCI. CASE PRESENTATIONS: Narrative case presentations are deriving from in-depth qualitative interviews with two women aged 63 and 52, living with SCI. Both had complete motor neurological injuries that incurred at 27 and 35 years, respectively. Each woman was interviewed twice, approximately 10 years apart (age 63 and 52, and age 54 and 42). Each demonstrated high levels of resilience through evolving roles of family and caregivers, inner personal strength, and participation in their respective communities. We highlight differences, similarities, and evolution of resilience factors in and between each case. DISCUSSION: These cases illustrate examples of long-term resilience, adding richness to the resilience construct. Results provide knowledge that can be used to target rehabilitation interventions toward successful coping styles. In sharing these cases, we hope to assist clinicians and researchers to better recognize patterns of resilience in their own patients and study participants.

Recommendations for evaluation of neurogenic bladder and bowel dysfunction after spinal cord injury and/or disease.

Objective: To provide an overview of clinical assessments and diagnostic tools, self-report measures (SRMs) and data sets used in neurogenic bladder and bowel (NBB) dysfunction and recommendations for their use with persons with spinal cord injury /disease (SCI/D).Methods: Experts in SCI/D conducted literature reviews, compiled a list of NBB related assessments and measures, reviewed their psychometric properties, discussed their use in SCI/D and issued recommendations for the National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDEs) guidelines.Results: Clinical assessments included 15 objective tests and diagnostic tools for neurogenic bladder and 12 for neurogenic bowel. Following a two-phase evaluation, eight SRMs were selected for final review with the Qualiveen and Short-Form (SF) Qualiveen and the Neurogenic Bowel Dysfunction Score (NBDS) being recommended as supplemental, highly-recommended due to their strong psychometrics and extensive use in SCI/D. Two datasets and other SRM measures were recommended as supplemental.Conclusion: There is no one single measure that can be used to assess NBB dysfunction across all clinical research studies. Clinical and diagnostic tools are here recommended based on specific medical needs of the person with SCI/D. Following the CDE for SCI studies guidelines, we recommend both the SF-Qualiveen for bladder and the NBDS for bowel as relatively short measures with strong psychometrics. Other measures are also recommended. A combination of assessment tools (objective and subjective) to be used jointly across the spectrum of care seems critical to best capture changes related to NBB and develop better treatments.

Reproducibility of the international spinal cord injury quality of life basic data set: an international psychometric study.

STUDY DESIGN: Psychometric study. OBJECTIVES: To examine the reproducibility of the international spinal cord injury quality of life basic data set (QoL-BDS) in an international sample of community-dwelling adults with spinal cord injury or disease (SCI/SCD) and in subgroups with respect to age (< 50 vs. ≥ 50 years) and etiology. SETTING: Outpatient rehabilitation clinics and community. METHODS: Participants were people living with SCI/D in four countries, at least 1 year post onset and at least 18 years of age. The QoL-BDS consists of three items on satisfaction with life as a whole, physical health and psychological health rated on a 0-10 numerical rating scale. A fourth item on satisfaction with social life was included based on feedback from participants. RESULTS: A total of 79 people were included. Median age was 52 years. Most participants (69.6%) had SCI, paraplegia (53%), and 40.5% reported a motor complete injury. Median time between tests was 14 days (range 4-27). Intra-class correlation (ICC) values of the items ranged from 0.66 to 0.80. ICC values of the three-item and four-item total scores were identical and good (0.83; 95% CI 0.75-0.89). Subgroup analyses showed ICC values ranging from 0.76 to 0.83. Bland-Altman plots suggested no bias for the three-item total score, but some bias for the four-item total score. The limits of agreement of both scores were similar, wide at individual level and small at group level. CONCLUSIONS: This study provides evidence of reproducibility of the current version of the QoL-BDS. When adding a fourth item, reproducibility was maintained.

Psychological morbidity and chronic disease among adults with nontraumatic spinal cord injuries: a cohort study of privately insured beneficiaries.

BACKGROUND: Individuals living with a spinal cord injury (SCI) are at heightened risk for a number of chronic health conditions such as secondary comorbidities that may develop or be influenced by the injury, the presence of impairment, and/or the process of aging. However, very little is known about the development of secondary comorbidities among individuals living with nontraumatic SCIs (NTSCIs). PURPOSE: The objective of this study was to compare the prevalence of psychological morbidities and chronic diseases among adults with and without NTSCIs. DESIGN: Cross-sectional cohort from a nationwide insurance claims database. METHODS: Privately insured beneficiaries were included if they had an ICD-9-CM diagnostic code for a NTSCI and accompanying diagnosis of paraplegia, tetraplegia, quadriplegia, or unspecified paralysis (n=10,006). Adults without SCIs were also included (n=779,545). Prevalence estimates of common psychological morbidities, chronic diseases, and multimorbidity (≥2 conditions) were compared. RESULTS: Adults with NTSCIs had a higher prevalence of adjustment reaction (11.4% vs 5.1%), anxiety disorders (23.7% vs 14.5%), depressive disorders (31.6% vs 9.6%), drug dependence (3.4% vs 0.8%), episodic mood disorders (15.9% vs 5.4%), central pain syndrome (1% vs 0%), psychogenic pain (1.9% vs 0.2%), dementia (5.2% vs 1.5%), and psychological multimorbidity (29.3% vs 11.6%), as compared to adults without SCIs. The adjusted odds of psychological multimorbidity were 1.86 (95% confidence interval: 1.76-2.00). Adults with NTSCIs also had a significantly higher prevalence of all chronic diseases and chronic disease multimorbidity (73.5% vs 18%), except HIV/AIDS. After propensity matching for age, education, race, sex, and the chronic diseases (n=7,419 matched pairs), there was still a higher prevalence of adjustment reaction (9.2% vs 5.4%), depressive symptoms (23.5% vs 16.0%), central pain syndrome (1% vs 0%), psychogenic pain (1.5% vs 0.3%), and psychological multimorbidity (20.2% vs 17.4%) among adults with NTSCIs. CONCLUSIONS: Adults with NTSCIs have a significantly increased prevalence of psychological morbidities, chronic disease, and multimorbidity, as compared to adults without SCIs. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce risk of disease onset/progression in this higher risk population.

Preliminary psychometric analyses of the International Spinal Cord Injury Quality of Life Basic Data Set.

STUDY DESIGN: Secondary psychometric analysis of cross-sectional previously collected data. OBJECTIVES: Explore the floor and ceiling effects, convergent, and divergent validity of the International Spinal Cord Injury Basic Quality of Life Data Set (SCI QoL-BDS) in a sample of people with spinal cord damage (SCD) from different countries, with different causes (both traumatic and non-traumatic), and different settings. SETTING: Community dwellers with SCD in Australia, Brazil, India, The Netherlands, and USA, and inpatient rehabilitation: India. METHODS: Adults (>18 years) with chronic SCD with either traumatic or non-traumatic aetiologies living in the community (n = 624), in inpatient rehabilitation following the onset of SCI (India; n = 115) and able-bodied controls (Australia; n = 220) had the following data collected by survey or face-face interview: SCI QoL-BDS, demographic and clinical characteristics (e.g., age, gender, years post SCI/SCD, education, employment) and reference measures of quality of life, disability and depression. RESULTS: For the whole sample, there were no notable floor or ceiling effects, internal consistency was good (Cronbach's alpha = 0.84) and the corrected item-total correlations generally were acceptable (all > 0.3 except for in Brazilian cohort). Convergent and divergent validity were largely confirmed though there were some aspects of validity that were suboptimal. CONCLUSIONS: Only minor psychometric issues were identified. This preliminary analysis suggests that there are no reason for concern about the use of the SCI QoL-BDS for clinical or research purposes, notwithstanding the need for further studies.