Effectiveness and patient perspective on the use of intravesical gentamicin instillations to treat recurrent urinary tract infections in neurogenic lower urinary tract dysfunction.

INTRODUCTION: Patients with neurogenic lower urinary tract dysfunction (NGLUTD) who require catheterization either with clean intermittent catheters (CIC) or indwelling catheters suffer with frequent urinary tract infections (UTIs). This study assessed the efficacy, patient persistence, satisfaction, and the impact on quality of life (QoL) of gentamicin nightly bladder instillations with 15 mg. METHODS: This is a prospective survey of 36 patients with NGLUTD and recurrent UTIs prescribed long-term gentamicin to prevent UTIs. Eligible patients completed a questionnaire about their use and satisfaction with gentamicin therapy, as well as survey questionnaires to address QoL. A retrospective chart review was also performed to obtain medical history, confirm drug persistence, and obtain accurate UTI data for the 12 months preceding and after starting instillations. RESULTS: The rate of laboratory proven symptomatic UTI requiring antibiotic treatment decreased from 3.9 to 1.1 infections per year with no increase in antibiotic resistance and no significant side effects reported by patients. Eight patients stopped therapy before a full year for various reasons, but the remaining 72% of patients have continued to use the therapy now with a mean of 4.2 years later. Satisfaction among those continuing the medication was very high. CONCLUSION: Gentamicin bladder instillations with 15 mg nightly in patients with indwelling catheters or CIC with NGLUTD are very effective and safe with high patient satisfaction. This therapy can be maintained long-term with continued efficacy.

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.

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.

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.

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.

Risk Factors Associated With Neurogenic Bowel Complications and Dysfunction in Spinal Cord Injury.

OBJECTIVES: To (1) assess the factors associated with methods of bowel management and bowel-related complications; and (2) determine the risk factors associated with bowel complications and overall bowel dysfunction, using multivariate modeling. DESIGN: Cross-sectional observational study. SETTING: A Spinal Cord Injury Model System, with additional participants recruited from other sites. PARTICIPANTS: Subjects (N=291) who incurred traumatic spinal cord injury (SCI) with resultant neurogenic bowel who were ≥5 years postinjury at the time of interview. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Constipation, bowel incontinence, and neurogenic bowel dysfunction questionnaire scores. These measures were all derived from the Bowel and Bladder Treatment Index. Data analyses included descriptive and bivariate statistics as well as logistic and linear regression modeling. RESULTS: Risk factors contributing to bowel incontinence included overall bowel dysfunction as measured by the neurogenic bowel dysfunction score, timing of bowel program, being married or having a significant other, urinary incontinence, constipation, and use of diuretics. Constipation was best predicted by age, race/ethnicity, using laxatives/oral medications, incomplete tetraplegia, frequency of bowel movements, abdominal pain, access to clinicians and caregivers, and history of bowel surgeries. Neurogenic bowel dysfunction scores were predicted by neurologic classification; use of laxatives, oral medications, or both; bowel incontinence; and frequency of fiber intake. CONCLUSIONS: These results suggest a number of factors that should be considered when treating neurogenic bowel complications and dysfunction in persons with SCI.

Evaluating the Psychometric Properties and Responsiveness to Change of 3 Depression Measures in a Sample of Persons With Traumatic Spinal Cord Injury and Major Depressive Disorder.

OBJECTIVES: To compare the measurement properties and responsiveness to change of the Patient Health Questionnaire-9 (PHQ-9), the Hopkins Symptom Checklist-20 (HSCL-20), and the Hamilton Depression Rating Scale (HAM-D) in people with spinal cord injury (SCI) diagnosed with major depressive disorder (MDD). DESIGN: Secondary analysis of depression symptoms measured at 6 occasions over 12 weeks as part of a randomized controlled trial of venlafaxine XR for MDD in persons with SCI. SETTING: Outpatient and community settings. PARTICIPANTS: Individuals (N=133) consented and completed the drug trial. Eligibility criteria were age at least 18 years, traumatic SCI, and diagnosis of MDD. INTERVENTIONS: Venlafaxine XR. MAIN OUTCOME MEASURES: Patients completed the PHQ-9 and the HSCL-20 depression scales; clinical investigators completed the HAM-D and the Structured Clinical Interview for Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition (DSM-IV) Dissociative Disorders, which was used as a diagnostic criterion measure. RESULTS: All 3 instruments were improved with rating scale analysis. The HSCL-20 and the HAM-D contained items that misfit the underlying construct and that correlated weakly with the total scores. Removing these items improved the internal consistency, with floor effects increasing slightly. The HAM-D correlated most strongly with Structured Clinical Interview for DSM-IV Dissociative Disorders diagnoses. Improvement in depression was similar on all outcome measures in both treatment and control groups. CONCLUSIONS: The psychometric properties of the revised depression instruments are more than adequate for routine use in adults with SCI and are responsive to clinical improvement. The PHQ-9 is the simplest instrument with measurement properties as good as or better than those of the other instruments and required the fewest modifications.

Lifetime prevalence of chronic health conditions among persons with spinal cord injury.

OBJECTIVE: To assess lifetime prevalence of 7 chronic health conditions (CHCs) among a cohort of adults with chronic traumatic spinal cord injury (SCI). DESIGN: Cross-sectional. SETTING: Rehabilitation hospital. PARTICIPANTS: Adults with SCI who were ≥18 years of age, were ≥1 year postinjury, and had residual neurologic effects impeding full recovery (n=1678). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: CHCs were measured using questions from the Behavioral Risk Factor Surveillance System for diabetes (not including gestational), heart attack (also called a myocardial infarction), angina or coronary artery disease, stroke, hypertension (not including during pregnancy), high blood cholesterol, or cancer. RESULTS: Of participants, 49.5% reported having at least 1 CHC, with 23.2% reporting ≥2 CHCs. The most frequently reported CHC was high cholesterol (29.3%) followed by hypertension (28.7%) and diabetes (11.8%). Although the prevalence of CHCs significantly increased with increasing age, only hypertension and cancer were significantly associated with years postinjury. Four CHCs (diabetes, coronary artery disease, hypertension, high cholesterol) were significantly related to mobility status as measured by injury level and ambulatory status. However, after controlling for age, years postinjury, sex, and race, mobility status became nonsignificant in relation to coronary artery disease, but it remained significantly associated with diabetes, hypertension, and high cholesterol. CONCLUSIONS: Clinicians should be aware of the risk of CHCs in persons with SCI and should screen for these conditions and regular maintenance activities related to SCI.

Differences in quality of life outcomes among depressed spinal cord injury trial participants.

OBJECTIVE: To assess the role that treatment response plays in a randomized controlled trial of an antidepressant among people with spinal cord injury (SCI) diagnosed with major depressive disorder (MDD) in explaining quality of life (QOL), assessed both globally as life satisfaction and in terms of physical and mental health-related QOL. DESIGN: Multivariable analyses were conducted, controlling for demographic, neurologic, and participatory factors and perceived functional limitations. SETTING: Rehabilitation centers. PARTICIPANTS: Of the 133 persons who were randomized into the Project to Improve Symptoms and Mood after Spinal Cord Injury randomized controlled trial, 124 participated in this study. All participants were between the ages of 18 and 64 years, at least 1 month post-SCI, met the Diagnostic and Statistical Manual of Mental Disorders, 4th edition, criteria for MDD, and completed the core measures used in this study. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The Satisfaction with Life Scale and the physical and mental component summary scores of the Medical Outcomes Study 12-Item Short-Form Health Survey. RESULTS: Reduction in depressive symptoms over the course of a 12-week trial was predictive of increased QOL, which was measured as life satisfaction and mental well-being, within the context of other explanatory factors. However, reduction in symptoms did not explain differences in physical well-being among those with MDD. Perceived functional disability explained all 3 indices of QOL. CONCLUSIONS: Greater recognition has been given to QOL outcomes as endpoints of clinical trials because these often reflect participants' reported outcomes. Our findings support the association of QOL to the reduction of depression symptoms among trial participants. This association differs depending on how QOL is defined and measured, with stronger relations observed with life satisfaction and mental well-being among those diagnosed with MDD. The lack of association between depression and physical well-being may be explained by participants' subjective interpretation of physical well-being after SCI and their expectations and perceptions of improved physical health-related QOL based on the use of assistive technology. Consistent with our findings, pain is likely to play a role in decreasing physical QOL among those with incomplete injuries. Practicing caution is suggested in using physical well-being as an endpoint in trials among people with SCI.

Novel risk factors associated with current suicidal ideation and lifetime suicide attempts in individuals with spinal cord injury.

OBJECTIVE: To determine unique associations of suicidal ideation (SI) and lifetime suicide attempts (SAs) in individuals with spinal cord injury (SCI). DESIGN: Cross-sectional analysis. SETTING: Outpatient. PARTICIPANTS: Individuals with SCI (N=2533) who were 18 years or older with a history of traumatic SCI. INTERVENTIONS: None. MAIN OUTCOME MEASURES: Any SI in the past 2 weeks (9-item Patient Health Questionnaire) and any lifetime SA. RESULTS: Three hundred twenty-three individuals (13.3%) reported SI in the past 2 weeks and 179 (7.4%) reported lifetime SA. After controlling for other factors, both lifetime SA and current SI were associated with study site and current level of depression. In addition, SA was associated with less education, younger age at injury, having current or past treatment of depression, and having bipolar disorder or schizophrenia. SI was associated with more years since injury and lifetime SA. Several psychological factors were associated with current SI and lifetime SAs, including lower environmental reward and less positive affect. In addition, control of one's community activities and spiritual well-being were associated with current SI. In bivariate comparisons, severity of SCI was also associated with the 47% of the SAs that occurred after injury. CONCLUSIONS: Several unique associations of SI and lifetime SA in individuals with SCI were identified, including level of environmental reward and control, spiritual well-being, and severity of SCI. These factors bear further investigation as prospective risk factors for suicidal behavior after SCI.

Overview of the Spinal Cord Injury--Quality of Life (SCI-QOL) measurement system.

CONTEXT/OBJECTIVE: The Spinal Cord Injury--Quality of Life (SCI-QOL) measurement system was developed to address the shortage of relevant and psychometrically sound patient reported outcome (PRO) measures available for clinical care and research in spinal cord injury (SCI) rehabilitation. Using a computer adaptive testing (CAT) approach, the SCI-QOL builds on the Patient Reported Outcomes Measurement Information System (PROMIS) and the Quality of Life in Neurological Disorders (Neuro-QOL) initiative. This initial manuscript introduces the background and development of the SCI-QOL measurement system. Greater detail is presented in the additional manuscripts of this special issue. DESIGN: Classical and contemporary test development methodologies were employed. Qualitative input was obtained from individuals with SCI and clinicians through interviews, focus groups, and cognitive debriefing. Item pools were field tested in a multi-site sample (n=877) and calibrated using item response theory methods. Initial reliability and validity testing was performed in a new sample of individuals with traumatic SCI (n=245). SETTING: Five Model SCI System centers and one Department of Veterans Affairs Medical Center across the United States. PARTICIPANTS: Adults with traumatic SCI. INTERVENTIONS: n/a OUTCOME MEASURES: n/a RESULTS: The SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL). CONCLUSION: The SCI-QOL measurement system consists of psychometrically sound measures for individuals with SCI. The manuscripts in this special issue provide evidence of the reliability and initial validity of this measurement system. The SCI-QOL also links to other measures designed for a general medical population.

Longitudinal analysis of hospitalization after spinal cord injury: variation based on race and ethnicity.

OBJECTIVE: To examine the longitudinal effects of race/ethnicity on hospitalization among adults with spinal cord injury (SCI) in the 10-year period after initial injury. DESIGN: Retrospective analysis of postinjury hospitalizations among non-Hispanic white, non-Hispanic African American, and Hispanic adults with SCI. SETTING: Community. Data were extracted from the 2011 National Spinal Cord Injury Model Systems database. PARTICIPANTS: Patients with traumatic SCI (N= 5146; white, 3175; African American, 1396; Hispanic, 575) who received rehabilitation at one of the relevant SCI Model Systems. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Hospitalization, including rate of hospitalization, number of hospitalizations, and number of days hospitalized during the 12 months before the first-, fifth-, and tenth-year follow-up interviews for the SCI Model Systems. RESULTS: Significant differences were found in rates of hospitalization at 1 and 5 years postinjury, with participants from Hispanic backgrounds reporting lower rates than either whites or African Americans. At 10 years postinjury, no differences were noted in the rate of hospitalization between racial/ethnic groups; however, compared with whites (P=.011) and Hispanics (P=.051), African Americans with SCI had 13 and 16 more days of hospitalization, respectively. Compared with the first year postinjury, the rate of hospitalization declined over time among whites, African Americans, and Hispanics; however, for African Americans, the number of days hospitalized increased by 12 days (P=.036) at 10 years versus 5 years postinjury. CONCLUSIONS: Racial/ethnic variation appears to exist in postinjury hospitalization for individuals with SCI, with Hispanics showing the lowest rates of hospitalization at 1 and 5 years postinjury and African Americans having a significantly higher number of days hospitalized at 10 years postinjury. Potential explanations for these variations are discussed, and recommendations are made for potential changes to policy and clinical care.

Predictors of participation enfranchisement after spinal cord injury: the mediating role of depression and moderating role of demographic and injury characteristics.

OBJECTIVES: (1) To examine the mediating effects of depressive symptoms on the relations between employment, grief, depression treatment, and participation enfranchisement after spinal cord injury (SCI); and (2) to examine the moderating role of demographic and injury characteristics, including sex, race, marital status, education, and injury level, and completeness on these relations. DESIGN: Cross-sectional survey as part of the Project to Improve Symptoms and Mood after SCI (PRISMS). SETTING: Rehabilitation facilities. PARTICIPANTS: Persons with SCI (N=522; average age, 42 y; 76% men; 64% white; 64% completed at least a high school education) enrolled from 2007 to 2011. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Participation enfranchisement. RESULTS: The final model fit the data relatively well (comparative fix index=.939; Tucker-Lewis Index=.894; root mean square error of approximation=.066; 90% confidence interval, .043-.089), explaining 32% of the variance in participation enfranchisement. Enfranchisement was positively related to employment and negatively related to depression. Grieving the loss of a loved one and the use of an antidepressant or psychotherapy were related to participation enfranchisement; these relations were mediated by depressive symptoms. Multigroup analyses supported the model's invariance across sex, marital status, severity of injury, and level of injury. CONCLUSIONS: Depression appears to mediate the influence of employment, grief, and depression treatments on participation enfranchisement after SCI. These relations are applicable regardless of sex, marital status, and injury completeness and level. These findings highlight efforts to improve the detection and treatment of depression in SCI rehabilitation programs that may enhance participation.

Review of cross-cultural issues related to quality of life after spinal cord injury.

Quality of life (QOL) is a dynamic concept that means different things to different people, both in the general public and within the research community. Because of this, a common definition of QOL has been hard to achieve. This article reviews cross-cultural issues related to QOL research in spinal cord injury (SCI). Many factors influence QOL for persons with SCI, including observable and objective indicators and subjective self-report ones. The World Health Organization's International Classification of Function, Disability and Health is used in this article as a framework to better understand how these factors may influence QOL. A number of important steps are summarized with respect to measurement issues in QOL. A comparison between data from 2 countries (United States and Brazil) using the International SCI QOL Basic Data Set shows similarities in scores and good reliability in the Brazilian sample. Substantial, significant correlations were observed among the SCI QOL Basic Data Set items and the WHOQOL-BREF within the US sample. The article ends with a set of recommendations for the development of cross-cultural measures of QOL for use in the SCI population.

Social Integration among Adults Aging with Spinal Cord Injury: The Role of Features in the Built and Natural Environment.

A growing number of adults are aging with spinal cord injury (SCI) acquired earlier in life. Social integration is important for health and participation after SCI. However, little is known about the role of the community built environment for supporting social integration among adults aging with SCI. Using a structured telephone survey with 182 adults aging with SCI in the Midwestern United States, we found that more community built environment facilitators (e.g., curb cuts, automatic doors, paved surfaces) and fewer barriers (e.g., gravel surfaces, crowds) significantly increased the odds of regularly engaging in both formal and informal social activities.

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.

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.

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.