Sex-Related Differences in Shoulder Complex Joint Dynamics Variability During Pediatric Manual Wheelchair Propulsion.

More than 80% of adult manual wheelchair users with spinal cord injuries will experience shoulder pain. Females and those with decreased shoulder dynamics variability are more likely to experience pain in adulthood. Sex-related differences in shoulder dynamics variability during pediatric manual wheelchair propulsion may influence the lifetime risk of pain. We evaluated the influence of sex on 3-dimensional shoulder complex joint dynamics variability in 25 (12 females and 13 males) pediatric manual wheelchair users with spinal cord injury. Within-subject variability was quantified using the coefficient of variation. Permutation tests evaluated sex-related differences in variability using an adjusted critical alpha of P = .001. No sex-related differences in sternoclavicular or acromioclavicular joint kinematics or glenohumeral joint dynamics variability were observed (all P ≥ .042). Variability in motion, forces, and moments are considered important components of healthy joint function, as reduced variability may increase the likelihood of repetitive strain injury and pain. While further work is needed to generalize our results to other manual wheelchair user populations across the life span, our findings suggest that sex does not influence joint dynamics variability in pediatric manual wheelchair users with spinal cord injury.

Bladder and bowel function effects on emotional functioning in youth with spinal cord injury: a serial multiple mediator analysis.

STUDY DESIGN: Preliminary explanatory or mechanistic cross-sectional study. OBJECTIVES: This preliminary cross-sectional study investigates the hypothesized serial mediating effects of bladder/bowel worry, social worry, and social participation in the relationship between bladder function or bowel function and emotional functioning in youth with spinal cord injury (SCI) from their perspective. METHODS: The Bladder Function, Bowel Function, Worry Bladder Bowel, Worry Social, and Social Participation Scales from the PedsQL™ Spinal Cord Injury Module and the Emotional Functioning Scale from the PedsQL™ 4.0 Generic Core Scales Short Form SF15 were completed by 127 youth with SCI ages 8-24. Serial multiple mediator model analyses were conducted to test the hypothesized sequential mediating effects of bladder/bowel worry, social worry, and social participation as intervening variables separately for the cross-sectional association between bladder function or bowel function and emotional functioning. RESULTS: The separate cross-sectional negative association of bladder function and bowel function with emotional functioning were serially mediated by bladder/bowel worry, social worry and social participation, accounting for 28% and 31%, respectively, of the variance in youth-reported emotional functioning (p < 0.001), representing large effect sizes. CONCLUSIONS: In this preliminary study, bladder/bowel worry, social worry, and social participation explain in part the cross-sectional negative association of bladder function and bowel function with emotional functioning in youth with SCI from the youth perspective. Identifying the hypothesized associations of bladder function and bowel function, bladder/bowel worry, social worry, and social participation with emotional functioning may help inform future clinical research and practice for youth with SCI.

International Spinal Cord Injury Core Data Set (version 3.0)-including standardization of reporting.

STUDY DESIGN: Expert opinion, feedback, revisions and final consensus. OBJECTIVES: To update the International Spinal Cord Injury (SCI) Core Data Set while still retaining recommended standardization of data reporting. SETTING: International. METHODS: Comments on the data elements received from the SCI community were discussed in the International Core Data Set working group. The suggestions from this group were iteratively reviewed. The final version was circulated for final approval. RESULTS: The International SCI Core Data Set (Version 3.0) consists of 21 variables. The variable 'Gender' has been changed to 'Sex assigned at birth'; for the variable 'Spinal Cord Injury Etiology', the item, 'Sports or exercise during leisure time', has been clarified as 'including during leisure time'; for the variables 'Vertebral injury' and 'Associated injuries', the item 'Unknown' is reworded into: 'Not applicable (non-traumatic case)' and 'Unknown'; the variable 'Spinal surgery' has been expanded to include surgeries for individuals with non-traumatic SCI; for the variables related to the International Standards for Neurological Classification of SCI only the neurological level of injury (NLI) and the American Spinal Injury Association (ASIA) Impairment Scale (AIS) are to be reported, and a separate variable is included indicating if the NLI or the AIS or both are impacted by a non-SCI condition. CONCLUSION: The International SCI Core Data Set (Version 3.0) should be collected and reported for all studies of SCI to facilitate uniform descriptions of SCI populations and facilitate comparison of results collected worldwide.

Use of Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf) in individuals with pediatric-onset spinal cord injury.

OBJECTIVES: To investigate the psychometric properties and utility of the Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf), a measure of cognitive appraisals, among adults with pediatric-onset SCI. To examine the relation of the ADAPSS-sf to demographics, injury characteristics, and secondary health and psychosocial outcomes. STUDY DESIGN: A structured telephone interview was conducted to obtain measures of ADAPSS-sf, pain, sleep, secondary health complications, and psychosocial functioning. SETTING: Community in United States and Canada. PARTICIPANTS: Individuals who sustained an SCI at 18 years of age or younger (N = 115) were initially interviewed at age 19 years or older and followed annually. RESULTS: Study findings support sound psychometrics of the ADAPSS-sf. The measure demonstrated strong test-retest reliability and internal consistency. There were no differences on ADAPSS-sf scores in relation to current age, gender, race, etiology, injury severity, or injury level. Individuals who sustained SCI at an older age were more likely to endorse negative appraisals of their injury. Results suggest that higher negative SCI-related appraisals were related to higher mental health difficulties. Negative SCI-related appraisals were associated with sleep difficulties, pressure injuries, pain, distress from pain, and poor overall subjective ratings of health. CONCLUSIONS: This study confirms the use of the ADAPSS-sf in a pediatric-onset SCI adult population by demonstrating its good internal validity, test-retest reliability, convergent and face validity, and brevity. Moreover, the current study revealed that such appraisals are associated with both psychosocial and secondary health outcomes, further supporting the ADAPSS-sf as a valuable tool for clinicians and researchers.

Development of the Pediatric Quality of Life Inventory™ Spinal Cord Injury (PedsQL™ SCI) module: qualitative methods.

STUDY DESIGN: It is a qualitative study. OBJECTIVES: To develop the items and support content validity for the Pediatric Quality of Life Inventory™ (PedsQL™) Spinal Cord Injury Module for youth and emerging adults with spinal cord injury (SCI). SETTING: Community and children's hospital. METHODS: A comprehensive literature review was conducted in pediatric and SCI-specific health-related quality-of-life (HRQoL) measures to create an item bank. A multidisciplinary panel of experts convened to discuss the conceptual framework of the module, reviewed the item bank, and generated a core set of items through a process of "binning-and-winnowing". International clinicians and researchers participated in iterative rounds of a Modified Delphi survey, until 90% agreement was reached on all items of the core set, resulting in the construction of a preliminary module. Cognitive interviews were conducted on individuals with SCI and their parents to determine the relevance of items and age-appropriate wording of the preliminary module. The research team regularly reviewed transcriptions of the interviews, and incorporated participant feedback to modify the modules. This process was repeated until content saturation was achieved. RESULTS: A total of 43 participants completed the cognitive interviews. Following five iterations of cognitive interviews and modifications based on participant input, the PedsQL™ SCI Module was generated. It comprised 67 items in the 12 domains of Daily Activities, Mobility, Bladder Function, Bowel Function, Muscle Spasms, Pressure Injury, Pain, Orthostatic Hypotension, Autonomic Dysreflexia, Participation, Worry, and Emotions. CONCLUSIONS: The PedsQL™ SCI Module was developed using well-established qualitative methods. Internet-based field testing is underway to finalize its development and validation.

Tracking Spinal Cord Injury Functional Outcomes Across the Lifespan: Validation of Linking Coefficients.

OBJECTIVE: Validation of linking coefficients to transform Pediatric Spinal Cord Injury Activity Measure (PEDI-SCI/AM) scores to adult Spinal Cord Injury-Functional Index (SCI-FI) scores. DESIGN: This cross-sectional study administered PEDI-SCI/AM and SCI-FI computerized adaptive tests (CATs) and short forms (SFs) to children with SCI and parents or caregivers. SETTING: Hospitals, university, and rehabilitation institute. PARTICIPANTS: About 107 children with SCI and 96 parent or caregivers. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Linking coefficients estimated SCI-FI (est-SCI-FI) scores from PEDI-SCI/AM scores for matched domains. Correlations between est-SCI-FI and actual SCI-FI scores were calculated. If correlations exceeded the criterion linking (0.866), the following analyses to compare est-SCI-FI and actual SCI-FI scores were conducted: paired t tests, intraclass correlation coefficients (ICCs 3, 1), percent of cases with absolute score differences at different thresholds. RESULTS: Two matched domains, PEDI-SCI/AM Daily Routine/SCI-FI Self-Care and PEDI-SCI/AM General Mobility/SCI-FI Basic Mobility, met the linking criterion for both respondent-types (parent and child) and administration modes (CAT and SF). PEDI-SCI/AM Daily Routine and SCI-FI Fine Motor Function did not meet linking criterion for respondent type or mode. The linking criterion was met for wheelchair domains (child SF and CAT) and ambulation domains (child SF only). Significant differences between est-SCI-FI and actual SCI-FI scores were noted for all matched domains except Daily Routine/Self-Care (child SF only; parent SF and CAT). ICC values showed excellent agreement (range=0.75-0.89). Absolute differences between est-SCI-FI and actual SCI-FI scores were less than 1 standard deviation (except wheelchair CAT child). CONCLUSIONS: Linking coefficients applied to PEDI-SCI/AM scores can provide valid SCI-FI estimates that vary by domain, mode, and respondent type.

Global mapping for the epidemiology of paediatric spinal cord damage: towards a living data repository.

STUDY DESIGN: Literature review. OBJECTIVES: Globally map key paediatric spinal cord damage epidemiological measures and provide a framework for an ongoing repository of data. SETTING: Worldwide, initiative of ISCoS Prevention Committee. METHODS: Literature search of Medline (1946-March 2017) and Embase (1974-March 2017). Relevant articles in any language regarding children with spinal cord damage included. Stratification of data quality into Green/Yellow /Red 'zones' facilitated comparison between countries. RESULTS: A total of 862 abstracts were reviewed and data from 25 articles were included from 14 countries in 6 of the 21 Global Regions. Fourteen studies involved paediatric traumatic spinal cord injury (SCI) and seven were regarding non-traumatic spinal cord dysfunction (SCDys). An additional four articles provided both paediatric SCI and SCDys data. The median SCI incidence rates in Global Regions were: Asia, East 5.4/million population/year; Australasia 9.9/million population/year; Western Europe 3.3/million population/year and North America, High Income 13.2 million population/year. The median SCDys incidence rates in Global Regions were: Australasia 6.5/million population/year; Western Europe 6.2/million population/year and North America, High Income 2.1/million population/year. SCI was mostly due to land transport (46-74%), falls (12-35%) and sport/recreation (10-25%) and SCDys was mostly caused by tumours (30-63%) and inflammatory/autoimmune causes (28-35%). CONCLUSIONS: There is a scarcity of quality epidemiology studies of paediatric SCD regarding incidence, prevalence, aetiology and survival. Recent ISCoS frameworks provide guidance for researchers to use established classification of SCDys and age group cut-off levels in future studies, thereby improving the ability to compare and combine data.

It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI.

STUDY DESIGN: Focus group study. OBJECTIVES: Explore unmet needs and support preferences of caregivers of youth with spinal cord injury (SCI). SETTING: One pediatric specialty rehabilitation hospital system in the United States. METHODS: Four focus groups were conducted with a convenience sample of 26 caregivers who were primarily mothers (96%) and married (65%), and had at least some college education (85%). Children living with SCI were on average 12.8 years old (SD = 3.3, 8-18). The average age of injury was 4.7 years (SD = 4.4, 0-16.2); mean injury duration was 8.2 years (SD = 3.9, 2-16); 77% had paraplegia; and 58% were male. Focus groups were digitally recorded, transcribed verbatim, and coded using thematic analysis and NVivo. RESULTS: Qualitative data highlighted caregiver perspectives on unmet needs relating to two phases of care: acute and rehabilitation vs. current life with SCI, and two kinds of stressors: those associated with SCI and care vs. those related to other areas of the caregivers' lives, especially their families. Caregivers described stressful interactions with care systems and community services, articulated several concerns regarding well-being of family members, and noted that both they and their children with SCI experienced isolation. Caregivers articulated preferences for additional support from professionals and peers. CONCLUSIONS: Data suggest the need for ongoing caregiver interventions and strengthened family-centered care systems, including professional assistance navigating health systems and peer support. Intervention development would benefit from further qualitative data collection with additional caregivers of youth with SCI, including multiple family members, and families from more diverse care settings.

Evaluation of the graded redefined assessment of strength, sensibility and prehension (GRASSP) in children with tetraplegia.

STUDY DESIGN: Psychometric study. OBJECTIVE: To validate the GRASSP in pediatric SCI populations and establish the lower age of test administration. SETTING: United States: Pennsylvania, Maryland, Illinois, Michigan, California, Texas. METHODS: Mean, SD and range of scores were calculated and examined for known-group differences. Test-retest reliability was measured by the intra-class correlation, concurrent validity of the GRASSP against the SCIM, SCIM-SS, and the CUE-Q was measured by the Spearman correlation. RESULTS: GRASSP scores differed between participants with motor complete and incomplete injuries (p = <0.0001-0.036). Test-retest reliability was strong (ICC = 0.99). Weak correlation with the total SCIM (r = 0.33-0.66), and moderate to strong correlation with the SCIM-SC (r = 37-0.70) and CUE-Q (r = 0.40-0.84). CONCLUSION: Results support the validity of the GRASSP and provide evidence that the scores are reliable when administered to children. The GRASSP sensory and strength subtests are recommended for children beginning at 6 years of age, and the GRASSP prehension performance/ability subtest for children beginning at 8 years of age. Normative data are needed for the performance components of the GRASSP.

Despite limitations in content range, the SCIM-III is reproducible and a valid indicator of physical function in youths with spinal cord injury and dysfunction.

STUDY DESIGN: Multi-center, repeated measures OBJECTIVES: Evaluate psychometric properties of the SCIM-III in children. SETTING: Seven facilities in North America METHODS: One-hundred and twenty-seven youths, mean age of 10.8 years and chronic spinal cord injury/dysfunction completed two administrations of the Spinal Cord Independence Measure-III (SCIM-III). Mean, standard deviation, range values were calculated for SCIM-III total and subscales for the entire sample, four age groups and injury characteristics. Test-retest reliability, concurrent validity, and floor and ceiling effects were examined. RESULTS: Total SCIM-III and self-care (SC) subscale scores for the youngest age group were lower than those for the three older age groups. There were statistically significant differences in SC subscale scores between neurological level (NL) C5-T1 and T2 -T12; C5-T1 and L1-S4/5; and T2-T12 and L1-S4/5 and in in-room, and indoor/outdoor mobility subscale scores between C1-C4 and T2-T12; C1-C4 and L1-S4/5; C5-T1 and T2-T12; C5-T1 and L1-S4/5; and T2-T12 and L1-S4/5. All scores between motor complete and motor incomplete differed. Test-retest reliability was good (ICC values = > 0.84) and there was moderate to strong correlation between SCIM-III and the FIM® Instrument (r = 0.77-0.92). Ceiling effects were present in the SC subscale for the oldest age group (24%) and for NL L1-S4/5 (35.5%) and in in-room mobility subscale for 6-12 (45.7%), 13-15 (30.43%) and 16-17 (60%) ages, paraplegia (42.4%), tetraplegia (37.1%), incomplete injuries (50%), and T2-T12 (38%) and L1-S4/5 (100%) NL. CONCLUSION: Despite limitations in content range, the SCIM-III is reproducible, and a valid indicator of physical functioning in youth with SCI/D 6 years of age and older. SPONSORSHIP: The study was funded by the Craig H. Neilsen Foundation, Spinal Cord Injury Research on the Translation Spectrum, Senior Research Award Grant #282592 (Mulcahey, PI).

Long-Term Outcomes and Longitudinal Changes of Neurogenic Bowel Management in Adults With Pediatric-Onset Spinal Cord Injury.

OBJECTIVES: To describe long-term outcomes of neurogenic bowel dysfunction (NBD), determine changes over time in the type of bowel program, and determine changes in psychosocial outcomes associated with NBD-related factors in adults with pediatric-onset spinal cord injury (SCI). DESIGN: Longitudinal cohort survey. Follow-up occurred annually for a total of 466 interviews, with most participants (75%) contributing to at least 3 consecutive interviews. SETTING: Community. PARTICIPANTS: Adults (N=131) who had sustained an SCI before the age of 19 years (men, 64.1%; tetraplegia, 58.8%; mean age ± SD, 33.4±6.1y; mean time since injury ± SD, 19.5±7.0y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Type and evacuation time of bowel management programs; standardized measures assessing life satisfaction, health perception, depressive symptoms, and participation. Generalized estimating equations were formulated to determine odds of change in outcomes over time. RESULTS: At first interview, rectal suppository/enema use was most common (51%). Over time, the likelihood of using manual evacuation (odds ratio [OR]=1.077; 95% confidence interval [CI], 1.023-1.134; P=.005), oral laxatives (OR=1.052; 95% CI, 1.001-1.107; P=.047), and colostomy (OR=1.071; 95% CI, 1.001-1.147; P=.047) increased, whereas the odds of rectal suppository use decreased (OR=.933; 95% CI, .896-.973; P=.001). Bowel evacuation times were likely to decrease over time in participants using manual evacuation (OR=.499; 95% CI, .256-.974; P=.042) and digital rectal stimulation (OR=.490; 95% CI, .274-.881; P=.017), but increase for rectal suppository/enema use (OR=1.871; 95% CI, 1.264-2.771; P=.002). When the level of injury was controlled for, participants using manual evacuation and digital rectal stimulation were more likely to have increases in community participation scores (P<.05). CONCLUSIONS: Changes in type of bowel program over time may be associated with the time required to complete bowel evacuation in this relatively young adult SCI population.

Understanding post-traumatic growth following pediatric-onset spinal cord injury: the critical role of coping strategies for facilitating positive psychological outcomes.

AIM: The aim of this study was to explore positive psychological growth in individuals who had sustained spinal cord injuries (SCIs) in childhood, and to identify factors correlating with such growth. METHOD: Data were drawn from ongoing research aimed at assessing the long-term outcomes of pediatric-onset SCIs in adults. Participants were assessed using measures of demographics, coping ability, post-traumatic growth, life satisfaction, happiness, and mental health. The study sample included 161 adults with a mean age of 33 years and 2 months (SD 7y 3mo, range 19-50y). The participants had sustained SCIs between the ages of 7 years and 18 years (mean 14y 10mo, SD 2y 6mo) and were injured for an average of 17 years and 9 months (SD 7y 7mo, range 1-36y). Sixty-four percent of participants were male, 81% were white, 63% had tetraplegia, and 70% had complete injuries. RESULTS: The vast majority of participants (99%) recognized that at least one positive change had occurred in their life as a result of their SCI. Post-traumatic growth was significantly associated with behavioral (r=0.29, p<0.001) and cognitive (r=0.39, p<0.001) coping strategies, as well as with increased life satisfaction (r=0.18, p=0.024) and happiness (r=0.27, p=0.001), but was unrelated to psychological distress. Additional analyses indicated that post-traumatic growth mediated effects of cognitive coping on happiness, but not on life satisfaction. INTERPRETATION: The majority of individuals with pediatric-onset SCIs experienced positive psychological growth. Coping strategies are crucial to this growth process.

Patterns of coping strategy use and relationships with psychosocial health in adolescents with spinal cord injury.

OBJECTIVE: To investigate patterns of coping among adolescents with spinal cord injury (SCI). METHODS: Youth aged 13-18 years with SCI completed measures of participation, quality of life (QOL), mental health symptoms, and coping. A hierarchical agglomerative cluster analysis using Ward's method was conducted. Subsequent analyses examined relationships between clusters and psychosocial functioning. RESULTS: 199 youth were an average of 15.95 years (SD = 1.71) at interview and 11.02 years (SD = 5.45) at injury. 56% percent were male, 64% White, and 62% had paraplegia. Four groups of "copers" emerged: ineffective, active, avoidant, and cognitive. Cognitive copers reported significantly less mental health symptomatology and higher QOL, followed by avoidant, active, and ineffective copers. Active copers showed significantly greater participation relative to ineffective, avoidant, and cognitive copers. CONCLUSIONS: These results suggest that coping profiles have meaningful relationships with adjustment. Reliance on cognitive strategies, with low endorsement of other strategies, may be associated with better psychosocial health.

Occupational characteristics of adults with pediatric-onset spinal cord injury.

BACKGROUND: Employment rates among individuals with spinal cord injury (SCI) are lower than in the general population and little is known about the specific occupations in which they are employed. OBJECTIVES: To describe specific occupations of adults with pediatric-onset SCI using the 2010 Standard Occupational Classification (SOC) system and to determine associations between SOC occupations and demographic factors. METHODS: Cross-sectional data specific to education and employment were collected from the last interviews of a larger longitudinal study. Occupations were categorized according to the 2010 SOC system. SOC groups were compared within gender level of injury and final education. RESULTS: Of the 461 total participants 219 (47.5%) were employed and specific occupations were available for 179. Among the SOC groups Education Law Community Service Arts and Media Occupations were most prevalent (30.2%) followed by Management Business and Finance Occupations (21.1%) Computer Engineering and Science Occupations (10.6%) Administrative and Office Support Occupations (10.0%) Service Occupations (7.3%) Healthcare Practitioners and Technical Occupations (3.9%) and Production Occupations (3.4%). Differences were found in the distribution of SOC groups between gender levels of injury and final education groups. CONCLUSION: A wide variety of occupations were reported in adults with pediatric-onset SCI generally in concordance with final education and functional ability levels.

Symptoms of depression over time in adults with pediatric-onset spinal cord injury.

OBJECTIVE: To investigate the prevalence of depressive symptoms in adults with pediatric-onset spinal cord injury (SCI) and explore potential risk factors that may be associated with elevated symptoms. DESIGN: Longitudinal, cohort survey over a period of 2 to 9 years. Follow-up occurred approximately every year, a total of 868 interviews were conducted, and most participants contributed to at least 3 waves of data (72%; range, 2-8; mean, 4.34±2.16). SETTING: Community. PARTICIPANTS: Adults (N=214; 133 men; mean age at first interview, 29.52±5.21y; range, 24-42y) who sustained an SCI prior to age 19 (mean age at injury, 13.93±4.37y; range, 0-18y). Participants tended to have complete injuries (71%) and tetraplegia (58%). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participants completed measures assessing psychosocial functioning, physical independence, participation, and depression at each time point. Multilevel growth modeling analyses were used to explore depression symptoms across time. RESULTS: Depression symptoms at initial status were typically minimal (3.07±.24; 95% confidence interval, 2.6-3.54) but fluctuated significantly over time (P<.01). Several factors emerged as significant predictors of depressive symptoms in the final model, including less community participation (P<.01), incomplete injury (P=.02), hazardous drinking (P=.02), bladder incontinence (P=.01), and pain (P=.03). Within individuals, as bowel accidents (P<.01) and pain increased (P<.01), depression scores increased; however, marriage resulted in decreases in depression scores for individuals (P=.02). CONCLUSIONS: These findings suggest that most patients with pediatric-onset SCI are psychologically resilient, but strategies to minimize secondary health complications and foster community participation and engagement should be considered.

Longitudinal changes in medical complications in adults with pediatric-onset spinal cord injury.

OBJECTIVES: To determine longitudinal changes in the occurrence of medical complications in adults with pediatric-onset spinal cord injury (SCI). DESIGN: Longitudinal study of long-term outcomes. SETTING: Community. PARTICIPANTS: Individuals who had sustained an SCI before age 19, were 23 years of age or older at initial interview, and followed annually between 1996 and 2011. They were classified into four American Spinal Injury Association (ASIA) Impairment Scale (AIS) severity groups: C1-4 AIS ABC, C5-8 AIS ABC, T1-S5 AIS ABC, AIS D. OUTCOME MEASURES: Generalized estimating equation (GEE) models were formulated to obtain the odds ratio (OR) of having a medical complication over time. RESULTS: A total of 1793 interviews were conducted among 226 men and 125 women (86% Caucasian; age at baseline, 26.7 ± 3.6 years; time since injury at baseline, 12.9 ± 5.2 years). Odds of complication occurrence over time varied among severity groups, with increased ORs of severe urinary tract infection (1.05, confidence interval (CI) 1.02-1.09), autonomic dysreflexia (AD) (1.09, CI 1.05-1.14), spasticity (1.06, CI 1.01-1.11), pneumonia/respiratory failure (1.09, CI 1.03-1.16), and hypertension/cardiac disease (1.07, CI 1.01-1.15) in the C1-4 ABC group; AD (1.08, CI 1.04-1.13) and pneumonia/respiratory failure (1.09, CI 1.02-1.16) in the C5-8 ABC group; and hypertension/cardiac disease (1.08, CI 1.02-1.14) in the T1-S5 ABC group. Upper extremity joint pain had increased odds of occurrence in all injury severity groups. CONCLUSION: The significantly increased odds of having medical complications over time warrants awareness of risk factors and implementation of preventive measures to avoid adverse consequences of complications and to maintain independence in individuals with pediatric-onset SCI.

Mental health and risk of secondary medical complications in adults with pediatric-onset spinal cord injury.

OBJECTIVE: To investigate mental health problems in adults with pediatric-onset spinal cord injury (SCI) and explore how these problems relate to the risk of negative outcomes over time. METHOD: The study included 466 adults who sustained an SCI prior to age 19 years and had been injured for at least 1 year. Participants were interviewed on an approximately annual basis using a study-specific questionnaire and standardized measures of depression, anxiety, substance use, and community involvement. Generalized estimating equations were used to assess the risk of negative outcomes across time as a function of depression, anxiety, and substance misuse. RESULTS: Of the participants who reported on each domain of mental health, 26% reported misuse of alcohol or drugs (122/466), 21% reported problems with depression (78/360), and 29% reported problems with anxiety (49/168). Depression was associated with increased odds of pressure ulcers, urinary tract infections, hospitalizations, pain, and smoking and lower levels of economic independence and mobility. Anxiety was associated with increased odds of hospitalization, pain, and smoking. Substance misuse predicted an increased risk of pressure ulcers, pain, and smoking and decreased odds of occupational involvement. When examining the effect of mental health with time, results showed that depression accelerated the risk of urinary tract infections, respiratory complications, and hospitalizations and anxiety and depression accelerated risk for lower occupational independence. CONCLUSIONS: The added burden that mental health difficulties pose for medical and psychosocial outcomes highlight the importance of monitoring and treating mental health symptoms in pediatric-onset SCI.

Depression and anxiety in adolescents with pediatric-onset spinal cord injury.

BACKGROUND: Little is known about depression and anxiety in adolescents with spinal cord injury (SCI). OBJECTIVE: To examine how depression, anxiety, suicidal ideation, and usage of treatment differ by age and sex among adolescents with SCI. METHOD: Youth 12 to 18 years old who had acquired SCI at least 1 year prior were recruited from 3 specialty hospitals. They completed the Children's Depression Inventory (ages 12-17 years) or Beck Depression Inventory-II (18 years), and Revised Children's Manifest Anxiety Scale (12-18 years). Analyses assessed differences between younger and older adolescents and between males and females. RESULTS: The 236 participants were an average age of 15.58 years (SD 1.98), 58% were male, and 60% Caucasian. Average age at injury was 10.57 years (SD 5.50), and 62% had paraplegia. For depression, 5.5% of adolescents ages 12 to 17 years exceeded the clinical cutoff and 12.7% of 18-year-old adolescents fell into a range of moderate or severe depression. For anxiety, 10.6% of adolescents ages 12 to 18 years exceeded the clinical cutoff. Univariate results revealed that older adolescents were more depressed than younger adolescents, and girls were more anxious than boys. An interaction between sex and age emerged, in that older adolescent girls were significantly more anxious than other youth. Older adolescents were also more likely to be taking medications for emotional, psychological, or behavioral reasons. Reports of suicidal ideation did not differ by adolescent age or sex. CONCLUSION: For these adolescents, depression differed with age, and anxiety differed based on age and sex. Implications for intervention include early identification and treatment for struggling adolescents.

Psychosocial outcomes of children and adolescents with early-onset spinal cord injury and those with spina bifida.

PURPOSE: To describe psychosocial outcomes of children and adolescents with early-onset spinal cord injury (SCI) and spina bifida (SB) and identify differences between them. METHODS: Eighty-three participants had acquired SCI before age 3 years (mean age 10.6 ± 3.8 yrs), and 54 had SB (mean age 11.7 ± 4.1 yrs). The participants completed standardized assessments of participation, quality of life (QOL), anxiety, and depression. Independent-sample t tests and Mann-Whitney tests were used to assess group differences. RESULTS: Participants with SCI reported higher school QOL (P = .016) and lower anxiety with social concerns/concentration (P = .037) than did participants with SB. The subgroup of participants with SCI with paraplegia reported higher school (P = .014) and overall (P = .034) QOL, and they participated in more activities (P = .015) than participants with SB. CONCLUSIONS: Children and adolescents with SCI with paraplegia have greater school and overall QOL and participate in more activities than children and adolescents with SB. Children and adolescents with SB would benefit from increased support at school and in social participation.

Overview of psychosocial health among youth with spinal cord injury.

BACKGROUND: Psychosocial health can be conceptualized as being mentally, emotionally, and socially well. Little is known about normative psychosocial development among children and adolescents with spinal cord injury (SCI). OBJECTIVE: To provide a comprehensive overview of psychosocial health of 410 youth with SCI from ages 2 to 18 years. To understand developmental trends, data are presented separately for ages 2-5, 6-12, 13-15, and 16-18 years. METHODS: Youth with SCI were recruited from 1 of 3 pediatric specialty hospitals within a single hospital system. Structured surveys assessing community participation, quality of life (QOL), and mental health (including anxiety and depression) were completed by youth with SCI (for ages 6-18) or their primary caregivers (for ages 2-5). Descriptive statistics were used to assess how patients scored on all standardized measures. RESULTS: Of the 410 participants, 56% were male, 64% were Caucasian, 66% had paraplegia, and 55% had complete injuries. On average, the participants were 12 years old (SD 4.87) at interview and 7.26 years old (SD 5.97) at injury. Psychosocial health outcomes were described for each of the 4 age groups: 2-5 years (n = 52), 6-12 (n = 142), 13-15 (n = 82), and 16-18 (n = 134) years. CONCLUSIONS: As compared to published norms, this sample of youth with SCI seemed to be experiencing decreased levels of community participation and QOL, but also decreased levels of anxiety and depression. These data provide needed information to clinicians regarding how youth with SCI may typically experience psychosocial health and where their patients fit into that typical experience.