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.

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.

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.

"Earth angels" and parking spots: qualitative perspectives on healthy aging with spinal cord injury.

PURPOSE: People aging with spinal cord injury (SCI) can experience the premature onset of comorbid conditions, as well as the development and progression of secondary health conditions. The aim of this study was to understand the subjective experiences of persons aging with SCI in relation to their surrounding social and physical environments, including the impact of barriers and facilitators.Material/Methods: Eleven individuals who had an SCI for more than ten years and were 45 years or older participated in a semi-structured phone interview about their experiences with healthy aging, social participation, social supports, and community barriers. RESULTS: Four main themes emerged in the qualitative data that captured the subjective experience of aging with SCI. These were: (1) Maintaining Physical Independence; (2) Importance of Resources and Special Equipment; (3) Planning Ahead; and (4) Finding Ways to Adapt. CONCLUSIONS: The findings from this study highlight the importance of looking beyond individual factors to consider the social and environmental factors that support continued independence and participation in society as people living with long term SCI experience their aging process. Qualitative research that delves further into the dynamics behind this process is needed to fully anticipate the needs of this growing population.IMPLICATIONS FOR REHABILITATIONPeople aging with spinal cord injury (SCI) who are engaged in their social and physical environments have become increasingly adaptive when faced with accelerating and secondary comorbidities.Programs and facilities should ensure universal access to prevention and self-management programs that target physical activity and health habits when considered in the context of a patient's socio-environmental constraints and resources.Clinical healthcare providers need to engage with their patients to develop an early intervention approach to preserve functional capacity while navigating potential future health problems.Clinicians should act as advocates for ongoing policy changes that help promote an environment more inclusive towards people aging with SCI.

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.

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.

Contextualizing the lived experience of quality of life for persons with spinal cord injury: A mixed-methods application of the response shift model.

Objective: The objective of this study was to gain greater insight into individuals' quality of life (QOL) definitions, appraisals, and adaptations following spinal cord injury (SCI). Design: A mixed-methods design, applying the Schwartz and Sprangers response shift (RS) model. RS is a cognitive process wherein, in response to a change in health status, individuals change internal standards, values, or conceptualization of QOL Setting: Community-dwelling participants who receive medical treatment at a major Midwestern medical system and nearby Veterans' Affairs hospital. Participants: A purposive sample of participants with SCI (N = 40) completed semi-structured interviews and accompanying quantitative measures. Interventions: Not applicable. Outcome Measures: Qualitative data were analyzed using content analysis to identify themes. Analysis of variance were performed to detect differences based on themes and QOL, well-being, and demographic and injury characteristics. Results: Four RS themes were identified, capturing the range of participant perceptions of QOL. The themes ranged from complete RS, indicating active engagement in maintaining QOL, to awareness and comparisons redefining QOL, to a relative lack of RS. Average QOL ratings differed as a function of response shift themes. PROMIS Global Health, Anxiety, and Depression also differed as a function of RS themes. Conclusion: The RS model contextualizes differences in QOL definitions, appraisals, and adaptations in a way standardized QOL measures alone do not.

Assessment of the relationship of spiritual well-being to depression and quality of life for persons with spinal cord injury.

OBJECTIVE: This study sought to describe the association between spiritual well-being, demographic characteristics, quality of life (QOL) and depressive symptoms following spinal cord injury (SCI). We hypothesized QOL and depressed mood would both be explained by extent of spiritual well-being, and meaning-focused (M&P) spirituality would have a stronger impact than faith-focused spirituality. METHODS: 210 individuals with SCI were screened as part of a randomized control trial of venlafaxine XR for major depressive disorder (MDD). 204 completed all measures: Patient Health Questionniare-9 (PHQ-9) assessed depression, the FACIT-Sp assessed spiritual well-being, the Neuro-QOL PAWB scale assessed QOL, and the PANAS assessed affect. RESULTS: Approximately 26% had major depression. Bivariate correlations of scores on PAWB and PANAS and FACIT-Sp showed that all four scales had strong associations with those on PAWB (p < 0.0005). As hypothesized, both the M&P and Faith scales of the FACIT-Sp were significant predictors of QOL (ß = 0.544; p < 0.0005 and ß = 0.151; p = 0.004), though only the M&P scale was an independently significant predictor of likely MDD. CONCLUSION: The findings support that spirituality, as measured by the FACIT-Sp, is strongly associated with QOL and likelihood of MDD. Assessment of spirituality should be included along with more traditional psychological measurements to better inform treatment. Implications for Rehabilitation Spiritual beliefs can contribute to quality of life and may help moderate depressive symptoms that accompany chronic illness and disability, suggesting that rehabilitation professionals should address spirituality in working with their patients with spinal cord injury (SCI). While spiritual issues are often deferred to pastoral counselors during hospitalization, it is clear that addressing these is not the domain of one discipline and does not end upon inpatient discharge. In addressing spirituality, clinicians should tap the spiritual strengths present in their clients, whether meaning/peace-focused or religious, understanding that spirituality involves more than religiosity and also that having a sense of meaning and peace appears to be of great importance.

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.

Changes in pain and quality of life in depressed individuals with spinal cord injury: does type of pain matter?

OBJECTIVE: To examine the association of neuropathic and nociceptive pain severity and interference with quality of life (QoL) in persons with spinal cord injury (SCI) who underwent a randomized controlled 12-week trial of an antidepressant to treat depression. A secondary objective was to assess the effect of changes in pain on mobility and physical independence. DESIGN: Multivariable ANCOVA models controlling for relevant demographic covariates, treatment condition, and baseline pain and QoL were used. SETTING: Six rehabilitation centers. PARTICIPANTS: Of the 133 persons who were randomized into the trial, 108 provided pain severity and interference ratings through follow-up. INTERVENTIONS: Not applicable. OUTCOME MEASURES: The Satisfaction with Life Scale and the physical and mental component summary scores of the 12-Item Short-Form Health Survey (SF-12). Secondary outcome measures included the mobility and physical independence subscales of the Craig Handicap Assessment and Reporting Technique (CHART). RESULTS: Broadly, few associations between pain and QoL were evident. Results revealed relationships between lower baseline nociceptive pain interference and higher satisfaction with life and mental health-related QoL at 12 weeks. Similarly, lower neuropathic pain interference was associated with change in physical independence, but unrelated to mobility. CONCLUSIONS: Pain interference over time may be differentially related to QoL outcomes based on the type of pain following SCI, but overall, there were no extensive relationships between pain and QoL in this sample of depressed 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.

Self-Report of Behaviors to Manage Neurogenic Bowel and Bladder by Individuals with Chronic Spinal Cord Injury: Frequency and Associated Outcomes.

Background: The management of neurogenic bowel and bladder by individuals with spinal cord injury (SCI) often requires a complicated set of behaviors to optimize functioning and reduce complications. However, limited research is available to support the many recommendations that are made. Objective: To describe the occurrence of behaviors associated with the management of neurogenic bowel and bladder among individuals with chronic SCI and to explore whether relationships exist between the performance of those behaviors and outcomes related to health and quality of life. Methods: A survey was developed based on clinical guidelines to collect self-report information about the performance of specific behaviors associated with the management of neurogenic bowel and bladder by individuals with SCI. It was administered to 246 individuals with chronic SCI living in the community as part of a larger ongoing study. Results: Results suggest that the methods that those with SCI use to manage neurogenic bowel and bladder are multifaceted. Many methods are performed with significant consistency, but significant variations exist for some and are often associated with neurological status, methods of evacuation, and quality of life. Conclusion: Many people with SCI of long duration are not sure of the sources of recommendations for some of the management activities that they or their personal care assistants conduct. It is prudent for clinicians working with these people to review their recommendations periodically to ensure that they are current and understood.

Development and Feasibility of Health Mechanics: A Self-Management Program for Individuals with Spinal Cord Injury.

Objective: We conducted a pilot study to examine the feasibility of administering an individual, in-person version of Health Mechanics, an innovative self-management program designed to teach individuals with spinal cord injury (SCI) to maintain physical health and prevent secondary conditions. Methods: After baseline assessments, 27 participants were randomized using a 2:1 block design to either the experimental intervention or a usual care group. Thirteen of the 19 participants in the intervention group completed the program. Follow-up assessments were completed at 3 and 6 months after baseline. Results: Results suggest that the Health Mechanics intervention delivered in an in-person format was perceived as useful and relevant in addressing a diverse range of health issues with participants with a wide range of personal and impairment characteristics. However, attrition rates and barriers to recruitment suggested limitations in the acceptability of the format for this population. Conclusion: Additional research is needed to identify the populations that would most benefit from the program and the most efficacious context for administration.