Relevance of the international spinal cord injury basic data sets to youth: an Inter-Professional review with recommendations.

STUDY DESIGN: Mixed methods, using the Modified Delphi Technique and Expert Panel Review. OBJECTIVE: To evaluate the utility and relevance of the International Spinal Cord Injury (SCI) Core and Basic Data Sets for children and youth with SCI. SETTING: International. METHODS: Via 20 electronic surveys, an interprofessional sample of healthcare professionals with pediatric SCI experience participated in an iterative critical review of the International SCI Data Sets, and submitted suggestions for modifications for use with four pediatric age groups. A panel of 5 experts scrutinized the utility of all data sets, correlated any modifications with the developing National Institute of Neurological Disorders and Stroke (NINDS) pediatric SCI Common Data Elements (CDE) and distributed final recommendations for modifications required to the adult data sets to the International SCI Data Set Committee and the associated Working Groups. RESULTS: Two International SCI Data Sets were considered relevant and appropriate for use with children without any changes. Three were considered not appropriate or applicable for use with children, regardless of age. Recommendations were made for five data sets to enhance their relevance and applicability to children across the age groups, and recommendations for seven data sets were specific to infants and younger children. CONCLUSIONS: The results of this critical review are significant in that substantive recommendations to align the International SCI Core and Basic Data Sets to pediatric practice were made. SPONSORSHIP: This project was funded by the Rick Hansen Institute Grant# 2015-27.

Rewards of parenting children and adolescents with spinal cord injuries.

STUDY DESIGN: Mixed-method study. OBJECTIVES: Describe caregiver perspectives on the rewards of parenting youth with spinal cord injury (SCI) and explore the relationships between rewards and child/caregiver demographic characteristics and child psychosocial outcomes. SETTING: Data collection occurred at three pediatric specialty hospitals within a single hospital system in the United States. METHODS: Self-identified primary caregivers (n=178) of children aged 1-18 years answered the question: 'What has been most rewarding in parenting a child with SCI'? and completed a questionnaire about their child's health-related quality of life (HRQOL). Participants aged 7-18 years (n=134) also completed tools assessing their community participation, anxiety, depression and HRQOL. RESULTS: Four reward themes emerged: Enhanced Resilience (for example, resilience in my child, self and family), Caregiver-Child Relationship, Connecting with Others, and Learning. Caregivers of children with lower self-reported school and overall psychosocial HRQOL were more likely to report Enhanced Resilience in their child. Caregivers whose children had fewer depressive symptoms, lower levels of participation and who were older at injury and interview felt rewarded by an enhanced Caregiver-Child Relationship. Caregivers of children with a broader context of participation and higher school and psychosocial HRQOL reported Connecting with Others. Finally, unemployed caregivers and those with less education were more likely to report Learning. CONCLUSIONS: Caregivers reported a variety of rewards from parenting their children with SCI, and several relationships emerged between rewards and demographics and child psychosocial outcomes. Future research should further examine the positive experiences of caregivers and whether focusing on strengths might yield better long-term outcomes for children with SCI.

Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI.

STUDY DESIGN: In 2014, the adult spinal cord injury (SCI) common data element (CDE) recommendations were made available. This project was a review of the adult SCI CDE for relevance to children and youth with SCI. OBJECTIVES: The objective of this study was to review the National Institute of Neurologic Disorders and Stroke (NINDS) adult SCI CDEs for relevance to children and youth with SCI. SETTING: International. METHODS: The pediatric working group consisted of international members with varied fields of expertise related to pediatric SCI. The group convened biweekly meetings for 6 months in 2015. All of the adult SCI CDEs were reviewed, evaluated and modified/created for four age groups: 0-5 years, 6-12 years, 13-15 years and 16-18 years. Whenever possible, results of published research studies were used to guide recommendations. In the absence of empirical support, grey literature and international content expert consensus were garnered. Existing pediatric NINDS CDEs and new CDEs were developed in areas where adult recommendations were not appropriate. After internal working group review of domain recommendations, these pediatric CDEs were vetted during a public review from November through December 2015. RESULTS: Version 1.0 of the pediatric SCI CDEs was posted in February 2016. CONCLUSION: The pediatric SCI CDEs are incorporated directly into the NINDS SCI CDE sets and can be found at https://commondataelements.ninds.nih.gov.

Medical and psychological factors related to pain in adults with pediatric-onset spinal cord injury: a biopsychosocial model.

STUDY DESIGN: A cross-sectional study. OBJECTIVES: The aim of this study is to determine medical and psychological correlates of pain in individuals with pediatric-onset spinal cord injury (SCI). SETTING: Shriners Hospitals for Children-Chicago, Philadelphia and Northern California (USA). METHODS: A total of 187 adults who had sustained an injury before 19 years of age completed interviews that included medical information, standardized measures of psychological functioning (Beck Anxiety Inventory and Patient Health Questionnaire) and a comprehensive pain questionnaire to assess the location, frequency, intensity and duration of pain and distress and disability related to pain. RESULTS: The findings identified the medical and psychological correlates of pain. Greater symptoms of depression and anxiety were strong and consistent predictors of several aspects of pain, above and beyond the impact of gender, injury-related characteristics and secondary medical complications. DISCUSSION: The findings support a biopsychosocial model of the development and persistence of pain in individuals with pediatric-onset SCI. Interdisciplinary rehabilitation may incorporate psychological treatment such as cognitive-behavioral therapy to reduce the pain and improve functioning. The assessment and treatment of pain in pediatric-onset SCI is a clinical and research priority. SPONSORSHIP: This study is supported by funding from Shriners Hospitals for Children and the Craig H. Neilsen Foundation, grant #324671.

Evaluation of the Walking Index for Spinal Cord Injury II (WISCI-II) in children with Spinal Cord Injury (SCI).

STUDY DESIGN: Mixed methods were used in this study. The appropriateness of the levels of the Walking Index for Spinal Cord Injury II (WISCI-II) for application in children was critically reviewed by physical therapists using the Modified Delphi Technique, and the inter- and intra-rater reliability of the WISCI-II in children was evaluated. OBJECTIVES: To examine the construct validity, and to establish reliability of the WISCI-II related to its use in children with spinal cord injury (SCI). SETTING: United States of America. METHODS: Using a Modified Delphi Technique, physical therapists critically reviewed the WISCI-II levels for pediatric utilization. Concurrently, ambulatory children under age 18 years with SCI were evaluated using the WISCI-II on two occasions by the same therapist to establish intra-rater reliability. One trial was photographed and de-identified. Each photograph was reviewed by four different physical therapists who gave WISCI-II scores to establish inter-rater reliability. Summary and descriptive statistics were used to calculate the frequency of yes/no responses for each WISCI-II level question and to determine the percent agreement for each question. Inter- and intra-rater reliability was calculated using interclass correlation coefficients (ICCs) with 95% confidence intervals (CI). RESULTS: Construct validity was confirmed after one Delphi round during which at least 80% agreement was established by 51 physical therapists on the appropriateness of the WISCI-II levels for children. Fifty-two children with SCI aged 2-17 years completed repeated WISCI-II assessments and 40 de-identified photographs were scored by four physical therapists. Intra- and inter-rater reliability was high (ICC=0.997, CI=0.995-0.998 and ICC=0.97, CI=0.95-0.98, respectively). CONCLUSION: This study demonstrates support for the use of the WISCI-II in ambulatory children with SCI. SPONSORSHIP: This study was funded by the Craig H Neilsen Foundation, Spinal Cord Injury Research on the Translation Spectrum, Senior Research Award #282592 (Mulcahey, PI).

The Pediatric Measure of Participation (PMoP) short forms.

STUDY DESIGN: Multi-center cross-sectional cohort study. OBJECTIVES: The objectives of this study were to develop and validate short forms (SFs) of participation for child- and parent-reported outcomes following spinal cord injury (SCI). SETTING: Three pediatric orthopedic hospitals in the United States. METHODS: The expert panel used calibration data from the pediatric computerized adaptive test (CAT) development study (convenience sample of 381 children and adolescents with SCI and 322 parents or caregivers) to select SF items. The panel selected items for two domains (participation self-relevant to what I want to do; participation friends-relevant to what my friends do), with parent and child versions for each domain. Psychometric analyses included group reliability, Cronbach's alpha, agreement (SFs and item banks), percent of sample with highest (ceiling) and lowest (floor) scores by level of lesion (paraplegia/tetraplegia), and test information function. RESULTS: Group reliability and Cronbach's alpha values are acceptable (0.74-0.92) and agreement (intraclass correlation coefficients for SFs and total item banks) is strong (0.89-0.95). Floor effects were minimal for people with tetraplegia and paraplegia (0-1.19%). Ceiling effects were minimal for people with tetraplegia (0-3.13%) and slightly higher, but acceptable, for people with paraplegia (8.06-14.02%). Test information function for the SFs was sufficiently high over the range of scores for the majority of the sample. CONCLUSION: Pediatric Measure of Participation (PMoP) SFs are acceptable for use when CATs are not feasible. SPONSORSHIP: The study was funded by the Shriners Hospitals for Children Research Grant 79142 (Mulcahey, PI) and the Boston ROC Grant 5R24HD065688-05 (Jette, PI).

Measuring activity limitation outcomes in youth with spinal cord injury.

STUDY DESIGN: A cross-sectional study. OBJECTIVES: The Pediatric Spinal Cord Injury Activity Measure (PEDI-SCI AM), which includes calibrated item banks (child and parent versions) for general mobility, daily routines, wheeled mobility and ambulation, can be administered using computerized adaptive tests (CATs) or short forms (SFs). The study objectives are as follows: (1) to examine the psychometric properties of the PEDI-SCI AM item banks and 10-item CATs; and (2) to develop and evaluate the psychometric properties of PEDI-SCI AM SFs. SETTING: US Shriners Hospitals for Children (California, Illinois and Pennsylvania). METHODS: Calibration data from a convenience sample of 381 children and adolescents with SCI and 322 parents or caregivers were used to examine PEDI-SCI AM item banks, 10-item CATs and SF scores. We calculated group reliability, internal consistency (Cronbach's alpha) and interclass coefficients (ICCs) to assess agreement between 10-item CATs, SFs and item banks. The percent of the sample with highest (ceiling) and lowest (floor) scores was also determined. An expert panel selected items for 14 SFs. RESULTS: PEDI-SCI item banks, 10-item CATs and SFs demonstrate acceptable group reliability (0.73-0.96) and internal consistency (0.77-0.98). ICC values show strong agreement with item banks for 10-item CATs (0.72-0.99) and SFs. Floor effects are minimal (<15%). Ceiling effects are minimal for children with tetraplegia but high in children with paraplegia for general mobility (13.41-26.05%) and daily activities (12.99-32.71%). CONCLUSIONS: The PEDI-SCI AM exhibited strong psychometric properties for children with tetraplegia. Replenishment of the general mobility and daily routine item banks is needed to reduce ceiling effects noted for youth with paraplegia.

A cost-effectiveness analysis of long-term intermittent catheterisation with hydrophilic and uncoated catheters.

STUDY DESIGN: Cost-effectiveness analysisObjective:To establish a model to investigate the cost effectiveness for people with spinal cord injury (SCI), from a lifetime perspective, for the usage of two different single-use catheter designs: hydrophilic-coated (HC) and uncoated (UC). The model includes the long-term sequelae of impaired renal function and urinary tract infection (UTI). SETTING: Analysis based on a UK perspective. METHODS: A probabilistic Markov decision model was constructed, to compare lifetime costs and quality-adjusted life years, taking renal and UTI health states into consideration, as well as other catheter-related events. UTI event rates for the primary data set were based on data from hospital settings to ensure controlled and accurate reporting. A sensitivity analysis was applied to evaluate best- and worst-case scenarios. RESULTS: The model predicts that a 36-year-old SCI patient with chronic urinary retention will live an additional 1.4 years if using HC catheters compared with UC catheters, at an incremental cost of £2100. Moreover, the lifetime number of UTI events will be reduced by 16%. All best- and worst-case estimates were within the UK threshold of being cost effective. CONCLUSION: The use of HC catheters for intermittent catheterisation in SCI patients is highly cost effective. The outcome is consistent irrespective of whether UTI data are collected in hospital or community settings.

The spinal cord independence measure (SCIM)-III self report for youth.

STUDY DESIGN: The items and response scales of the Spinal Cord Independence Measure (SCIM-III) self report (SR) were exposed to formal cognitive testing with children with SCI, and in parallel a survey using the modified Delphi Technique was conducted to engage content experts in an iterative critical review of the SCIM-III SR. OBJECTIVES: To evaluate the validity of the SCIM-III SR for pediatric utilization. SETTING: United States of America. METHODS: Formal cognitive testing was conducted with 17 youths with SCI and required them to read and answer each SCIM-III SR item aloud. Think aloud methodology was used to record details about how youths understood and interpreted items and why they selected a given response. The interviews were audiotaped and transcribed verbatim. Content analysis focused on identifying words that children could not read or understand. In parallel, the Modified Delphi Technique engaged expert therapists to critically review the SCIM-III SR for pediatric utilization. RESULTS: Every SCIM-III SR item and response scale required modification before children were able to read, understand and respond to them. Youth encountered difficulties because of vague terms, medical jargon and complex words and phrases. Three iterative Delphi rounds were required before achieving 80% agreement that items and response scales were written well for children. CONCLUSION: Our findings informed modifications to every SCIM-III SR item and response scale, producing a pediatric version of the tool that we formally refer to as the SCIM-III SR-Youth (SCIM-III SR-Y). SPONSORSHIP: The study was funded by the Craig H Neilsen Foundation, Spinal Cord Injury Research on the Translation Spectrum, Senior Research Award #282592 (Mulcahey, PI).

Medication profile and polypharmacy in adults with pediatric-onset spinal cord injury.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To describe the medications taken by individuals who had sustained a spinal cord injury (SCI) in childhood or adolescence (age <19 years) and to report the prevalence of polypharmacy and its association with demographic, injury-related and psychosocial factors. SETTING: Community. METHODS: Structured interviews of adults with pediatric-onset SCI. Routine medications and secondary health conditions (SHCs) experienced were recorded. Polypharmacy was defined as the concomitant use of five or more different types of medications. Bivariate analyses and multiple regression models were conducted to determine associations between polypharmacy and demographic factors, injury-related factors, number of SHCs and psychosocial outcomes (FIM, SF-12v2 Health Survey, CHART, PHQ-9). RESULTS: A total of 159 participants (male, 63%; tetraplegia, 59%) with mean age 35.0±6.2 years (range, 26.7-50.9 years) were included. Most common routine medications were muscle relaxants (50.3%), bladder medications (48.5%), bowel agents (41.5%), analgesics (26.4%) and antidepressants (16.9%). Polypharmacy was present in 30.8% (n, 49) and was more prevalent in those with tetraplegia (40.2% vs 17.9%; P=0.003). Participants with polypharmacy were older, had lower FIM, CHART and SF-12v2 scores, and higher PHQ-9 scores. Regression models indicate the total number of SHCs, time since injury and tetraplegia to be significant positive predictors of polypharmacy. CONCLUSION: Duration of SCI and SHCs are risk factors for polypharmacy in this population of adults with SCI. Measures should be taken to prevent the occurrence of SHCs throughout adulthood so as to prevent the potentially adverse physiological effects and psychosocial outcomes associated with polypharmacy.

Predictive factors of hospitalization in adults with pediatric-onset SCI: a longitudinal analysis.

STUDY DESIGN: Longitudinal survey. OBJECTIVES: To investigate the prevalence and rate of hospitalization among adults with pediatric-onset spinal cord injury (SCI) and explore medical and behavioral factors associated with hospitalization. METHODS: This study included 368 adults who sustained a SCI prior to age 19 and were enrolled in an ongoing longitudinal study investigating the outcomes of pediatric-onset SCI. Participants were interviewed on an approximately annual basis using a study-specific questionnaire and standardized outcome measures: Satisfaction with Life Scale; Short-Form 12 Health Survey; Alcohol Use Disorders Identification Test; Patient Health Questionnaire-9 Depression Scale; and Craig Handicap Assessment and Recording Technique. RESULTS: Overall, 61% of participants self-reported at least one hospitalization across all time points; average length of hospitalization was 14.8 days (±23.3). Individuals who were ethnic minorities as well as those with high cervical-level SCI were more likely to be hospitalized. Those who were unemployed and those with health-care coverage were more likely to be hospitalized and have longer hospitalization stays. The risk of hospitalization was higher with occurrence of pressure ulcers, urinary tract infections, pneumonia, pain and a chronic medical condition. Smoking cigarettes increased the risk of hospitalization, whereas those who engaged in exercise and were active in the community had lower odds of hospitalization. CONCLUSION: Both medical and lifestyle factors have an important role in predicting hospitalization. An increased understanding of the risk and protective factors associated with hospitalization should assist clinicians in developing strategies and prevention efforts to minimize secondary health complications and foster healthy lifestyle behaviors.

Longitudinal employment outcomes in adults with pediatric-onset spinal cord injury.

STUDY DESIGN: Longitudinal survey. OBJECTIVES: To determine in adults with pediatric-onset spinal cord injury (SCI) employment outcomes, longitudinal changes in employment over time and changes in psychosocial outcomes associated with employment status. SETTING: Community setting. METHODS: Adults who had sustained a SCI before 19 years of age and had completed at least three consecutive annual interviews were included in the study. Generalized estimating equation models were formulated to obtain odds ratio (OR) of change in employment status and outcomes over time. RESULTS: Total 1691 interviews were conducted in 283 participants, 182 men and 101 women (88% Caucasian; age at baseline, 27.3±3.7 years; duration at baseline, 12.7±5.0 years). At the last interview (age, 34.4±5.2 years; duration, 19.9±6.1 years), 49.5% were employed and 47.0% had a baccalaureate or post-baccalaureate degree. There was no significant change in employment status over time (OR 1.01, confidence interval (CI) 0.98-1.04). Odds of employment increased over time in participants who were women (1.04, CI 1.00-1.08), married (1.05, CI 1.02-1.08) and attained baccalaureate (1.03, CI 1.00-1.07) or post-baccalaureate (1.05, CI 1.02-1.08) degree. Employment odds decreased with occurrence of autonomic dysreflexia (0.80, CI 0.65-0.99), spasticity (0.80, CI 0.59-0.99) or chronic medical condition (0.83, CI 0.71-0.98). Life satisfaction scores increased over time in those who remained employed (1.11, CI 1.01-1.22); odds of depression increased over time in those who remained unemployed (1.13, CI 1.04-1.23). CONCLUSION: Employment status remained relatively stable in adults with pediatric-onset SCI; however, changes in employment were associated with education, secondary health conditions and psychosocial well-being.

Examination and measurement of coping among adolescents with spinal cord injury.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To describe coping strategy use in adolescents with spinal cord injury (SCI), to explore the underlying factor structure of a measure of coping among adolescents with SCI and to assess relationships between coping and psychosocial outcomes. SETTING: Multiple pediatric SCI centers in the United States. METHODS: One hundred and eighty-two participants aged 13-17 years who experienced an SCI completed measures including the Kidcope, Children's Depression Inventory, Revised Children's Manifest Anxiety Scale and the Pediatric Quality of Life Inventory. RESULTS: Participants reported that cognitive restructuring and resignation are the most used coping strategies, whereas social support, emotional regulation (calming) and cognitive restructuring are the most effective coping strategies. An exploratory factor analysis revealed that a three-factor solution provided the most parsimonious model for the relationships between the different coping strategies. However, only one of the three factors had acceptable internal consistency. This factor comprised escape-oriented coping strategies or an avoidant approach to coping with the sequelae of SCI. After controlling for demographic/injury-related factors, higher scores on the escape-oriented factor were associated with the lower quality of life and higher levels of depression and anxiety symptomatology. CONCLUSION: Escape-oriented coping is associated with maladaptive psychosocial outcomes in adolescents with SCI. These adolescents report that active coping strategies are most effective in reducing SCI-related distress. Coping strategy use may mediate psychosocial outcomes in adolescents with SCI and represent an intervention target in adolescents who overly rely on escape-oriented coping.

Evaluation of newly developed item banks for child-reported outcomes of participation following spinal cord injury.

STUDY DESIGN: Multi-center, prospective calibration study. OBJECTIVES: To examine the psychometric properties of item banks designed for a computer adaptive test of participation. SETTING: Three pediatric specialty care hospitals in North America. METHODS: Newly developed item banks containing questions about participation were administered to 381 children, 8-21 years. Unidimensionality was evaluated using categorical confirmatory factor analysis and residual correlations. Pearson's correlations were calculated between simulated CATs and the full-item banks. RESULTS: CFI=0.905, TLI=0.951 and RMSEA=0.089 for the self-participation item bank; CFI=0.924, TLI=0.963 and RMSEA=0.083 friend-participation item bank. The 15- and 5- item simulated CATs and full-item banks were highly correlated. CONCLUSION: The newly developed self and friend-participation item banks met the required assumptions for CAT. Simulated CATs yielded scores comparable to full-item banks. The results of the study support the use of the item banks for a CAT of participation in children following spinal cord injury.

Substance use in young adults with pediatric-onset spinal cord injury.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To assess the prevalence of substance use in young adults with pediatric-onset spinal cord injury (SCI) and its relationship with demographic factors, and medical and psychosocial outcomes. SETTING: Young adults living in the United States who received pediatric SCI care at one of three SCI programs at the Shriners Hospitals for Children. METHODS: Individuals aged 21-25 years who had sustained SCI before the age of 19 were interviewed with a structured questionnaire including standardized outcome measures: FIM, satisfaction with life scale (SWLS), short-form 12 health survey (SF-12), patient health questionnaire-9 (PHQ-9) depression scale, and Craig handicap assessment and recording technique (CHART). RESULTS: Sample included 215 individuals with a mean age at interview of 23.3 (s.d.=0.9) years and mean age at injury of 13.2 (s.d.=4.9) years. In all, 24% had a college degree, 36% were employed and 12% were married. Regular substance use was reported by 28% for tobacco, 55% for alcohol and 11% for marijuana. Tobacco use was associated with depressive symptoms and unemployment; alcohol use was associated with having a college degree, single status and independent mobility; and marijuana use was associated with not having a college degree. There were no significant associations between substance use and injury-related factors or life satisfaction. CONCLUSION: Substance use in young adults with pediatric-onset SCI was associated with factors such as education, employment, marital status and depressive symptoms. Clinicians caring for youth with SCI should counsel patients and caregivers regarding the use of substances and potential associations with outcomes in adulthood.

The International Standards for Neurological Classification of Spinal Cord Injury: relationship between S4-5 dermatome testing and anorectal testing.

STUDY DESIGN: Prospective cross-sectional multicenter study. OBJECTIVE: To evaluate the correlation, sensitivity, specificity and predictive values of S4-5 dermatome and the anorectal examination for determination of sacral sparing in the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) examination. SETTING: Two tertiary hospitals that specialize in pediatric spinal cord injuries. METHODS: In all, 189 patients who were at minimum 3 month after spinal cord injury participated in complete ISNCSCI examinations. All examiners completed training for the proper completion of the ISNCSCI examination. Correlations and sensitivity/specificity analyses were conducted between S4-5 dermatome testing and the anorectal examination. Results were analyzed by age of patient, examiner, tetraplegia/paraplegia classification and injury level (T10-S3, L1-S3 and S3). RESULTS: The correlation between S4-5 dermatome and anorectal sensation was moderate (0.62, P<0.001). Using the anorectal examination as the gold standard, the sensitivity of S4-5 testing was 0.60 (0.49, 70) and specificity was 0.96 (0.90, 0.99). No single age group, tester, level, or type of injury differed from the overall result. CONCLUSION: In the pediatric population, the correlation between S4-5 and anorectal sensation was lower than anticipated. The sensitivity of 0.62 for S4-5 testing and diminished sensation between T10 and S3 suggests that anorectal testing may either be a more sensitive representation of S4-5 function or activate an alternative neuronal pathway that is perceived by the patient. Further investigation into the validity of the sacral sparing components of the ISNCSCI examination is warranted.

Relationships between the psychological characteristics of youth with spinal cord injury and their primary caregivers.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To describe anxiety and depression among caregivers of youth with spinal cord injury (SCI), examine predictors of caregiver psychological functioning and evaluate relationships between caregiver and child psychological outcomes. The protective factor of youth social relationships was also included to examine its impact on relationships between caregiver and child psychological functioning. SETTING: Families received services at one of three pediatric specialty hospitals within a single hospital system in the United States. METHODS: The study included English-speaking youth with SCI, aged between 7 and 17 years, who had been injured at least one year before, and their self-identified primary caregivers. Participants completed surveys assessing their anxiety, depression and youth's perceived social relationships. RESULTS: The study included 203 youth with an average age of 12.70 years (s.d.=3.15), and among them 70% had paraplegia. Seventy-eight percent of caregivers were mothers, 14% fathers and 8% other family members. In all, 16 and 21% of caregivers scored in the range of moderate/severe anxiety and depression, respectively. Being female and having a child with mental health problems predicted caregiver anxiety and depression. In addition, having a child who was older at the time of injury predicted caregiver depression. Poor social relationships, having a caregiver with mental health problems and having a caregiver with less education predicted both child anxiety and depression. CONCLUSION: Caregiver sex, child age at injury and child mental health were related to caregiver outcomes; caregiver education, marital status and child age were not. Caregiver mental health and education and child social relationships predicted child outcomes. Neither injury level nor injury severity was related to caregiver or child outcomes.

Spirituality and life satisfaction in adults with pediatric-onset spinal cord injury.

STUDY DESIGN: This study was a cross-sectional, follow-up survey. OBJECTIVES: To examine the role of importance of religion and spiritual coping on life satisfaction in adults with pediatric-onset spinal cord injury (SCI). SETTING: This study was carried out in a specialty hospital system. METHODS: Individuals who sustained an SCI before age 18 completed a structured telephone interview at ages 24-45. Demographic/medical questionnaires along with standardized measures were administered: Brief COPE, FIM, Craig Handicap Assessment and Reporting Technique (CHART), 12-item Short-Form Health Survey (SF-12) and Satisfaction with Life (SWL) scales. Spirituality was measured with a question assessing importance of religion and using the spiritual coping domain of the Brief COPE. RESULTS: A total of 298 individuals (62% men; 56% with tetraplegia) participated in this study. Approximately half (141) of the participants reported that religion is 'important to very important' to them and 55% (163) used spiritual coping. Importance of religion and spiritual coping was significantly associated with older age (P<0.01), longer duration of injury (P<0.01) and higher SWL (P<0.05). Importance of religion was also related to higher SF-12 mental component (P<0.05). Spiritual coping was negatively associated with motor independence (P<0.05) and CHART occupation (P<0.05). Moreover, spiritual coping emerged as a predictor of SWL, whereas importance of religion did not. CONCLUSION: Over half of the participants endorsed importance of religion and the use of spiritual coping. Spiritual coping, in particular, may serve a unique role in promoting SWL. Consequently, assessment of spirituality needs to become a standard part of care in the treatment of individuals with SCI and the use of spirituality-focused interventions to promote SWL should be explored.

Obesity and obesity-related secondary conditions in adolescents with intellectual/developmental disabilities.

BACKGROUND: To explore the prevalence of obesity and related secondary conditions associated with obesity in adolescents with intellectual/developmental disabilities (IDD). METHODS: In total, 461 parents of adolescents with IDD (M = 14.9 year, SD = 1.9) across 49 US states completed a web-based survey containing questions related to their child's health status, including body weight and existing health conditions. Results were compared with published data for youth without disabilities. RESULTS: Adolescents with autism and Down syndrome were two to three times more likely to be obese than adolescents in the general population. Secondary health conditions were higher in obese adolescents with IDD compared with healthy weight adolescents with IDD including high blood pressure, high blood cholesterol, diabetes, depression, fatigue, liver or gallbladder problems, low self-esteem, preoccupation with weight, early maturation and pressure sores. CONCLUSION: Obesity is as much of a health problem in youth with IDD as it is among youth without disabilities and, in certain disability groups, is a significantly greater health problem. Obese youth with IDD have a high number of obesity-related secondary conditions predisposing them to greater health problems as they transition into adulthood. Federal and local initiatives to reduce obesity among youth in the general population must recognise the need for interventions that are also relevant (i.e. accessible and effective) for youth with IDD.

Associations of beef calf wellness and body weight gain with internal location in a truck during transportation.

Cattle transportation by commercial truck carrier is common in the United States, and often cattle are placed within 1 of 8 potential compartments within the truck for the journey. The objective of this research was to determine potential associations between animal wellness (as measured by ADG and health outcomes) during a relatively short backgrounding phase (46.6 +/- 8.5 d) and location within the truck during transit. Data from 21 loads (average calves per load = 101.5; average BW = 210.1 +/- 19.4 kg) were included in the analysis. For each shipment, calves were divided among 8 compartments within the trailer: nose on top deck (NOT), nose on bottom deck (NOB), bottom deck middle forward (BDF), bottom deck middle rear (BDR), rear on the bottom (ROB), top deck middle forward (TDF), top deck middle rear (TDR), and rear on the top deck (ROT). General logistic (health outcomes) and mixed (ADG) models were employed to analyze the data accounting for effects due to truck section as well as the hierarchical data structure of multiple arrival times, loads, and pens. Cattle in the ROT section had less short-term BW gains compared with NOT and tended (P < 0.10) to be less than NOB. Cattle in the forward sections (NOT, NOB) were less (P = 0.02) likely [odds ratio (OR): 0.67, 95% confidence limits (CL): 0.50, 0.94] to be treated at least once compared with cattle in the middle sections (TDF, TDR, TOP, BDF, BDR, BOT). Calves in compartments with 15 head or less tended (P < 0.10) to have reduced odds of being treated compared with cattle in compartments with 16 to 30 head (OR: 0.79, 95% CL: 0.60, 1.0) or greater than 31 head (OR: 0.73, 95% CL: 0.53, 1.0). Our current project reveals that the location within the truck may affect calf health and performance.