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.

Problem solving and collaborative involvement among adolescents with spinal cord injury and their caregivers.

Objective: To determine the relationship between constructive adolescent problem solving (positive problem-solving orientation and rational problem-solving style) and caregiver problem solving and collaborative involvement with primary caregiver among adolescents with spinal cord injuries (SCIs). Positive constructive adolescent problem solving was hypothesized to be predicted by more effective caregiver problem solving and higher collaborative involvement. Methods: Participants in this cross-sectional study were 79 adolescent and primary caregiver dyads recruited from a pediatric rehabilitation care system in North America. All participants completed a standardized problem-solving instrument and adolescent participants completed an adapted measure of collaborative parent involvement. Results: More effective caregiver problem solving and adolescent perceptions of more collaboration with caregivers around SCI care were significantly associated with higher positive problem-solving orientation and higher rational problem-solving style among adolescents. Conclusions: Results underscore the importance of caregiver problem-solving skills and their collaboration with adolescents with SCI when addressing care needs. Clinically, findings highlight opportunities for parent involvement and skill-building as an important factor of rehabilitation for adolescents with SCI.

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.

Rural-urban disparities in healthcare factors and long-term health outcomes in individuals with pediatric-onset spinal cord injury.

Objective: Adults with pediatric-onset spinal cord injury (SCI) require long-term care and demonstrate elevated risk of secondary health conditions and psychosocial challenges. Medical providers are typically found in more populous and wealthy areas, resulting in a relative lack of providers in rural areas, a discrepancy even more pronounced among specialty providers. As a result, those who reside in rural regions potentially have unmet medical needs, representing a significant public health concern. The purpose of this study was to assess differences between rural and urban-residing participants with pediatric-onset SCI in factors affecting healthcare usage (e.g., employment, income, access to private insurance, community integration) and long-term healthcare outcomes (i.e., secondary health conditions and psychosocial functioning). Methods: Data were gathered from an ongoing study examining long-term outcomes of adults with pediatric-onset SCI. Participants (N = 490) completed measures of sociodemographics, injury characteristics, and medical outcomes. Participant zip codes were classified as rural or urban using the ProximityOne database based on the ZIP Code Tabulation Areas from the 2020 census. Results: Individuals residing in rural regions report lower levels of education, income, employment rates, private health insurance, and community integration (mobility, occupation, and social engagement), as well increased incidence of pressure injuries, urinary tract infections, hospitalizations, bowel incontinence, sleep difficulties, and perceived physical health. No differences in incidence of psychosocial functioning were identified. Conclusion: Mitigating identified disparities and obstacles to treatment of SCI due to residing in rural environments would result in important improvements in treatment outcomes and future prevention efforts of secondary health complications, improving the overall health of adults with pediatric-onset SCI.

The Influence of Age at Pediatric-Onset Spinal Cord Injury and Years of Wheelchair Use on Shoulder Complex Joint Dynamics During Manual Wheelchair Propulsion.

Objective: To assess the association of age at pediatric-onset spinal cord injury (SCI) and years of manual wheelchair use with shoulder dynamics. Design: Upper extremity kinematics and hand-rim kinetics were obtained during manual wheelchair propulsion. An inverse dynamics model computed three-dimensional acromioclavicular, sternoclavicular, and glenohumeral joint dynamics. Linear mixed effects models evaluated the association of age at injury onset and years of wheelchair use with shoulder dynamics. Setting: Motion laboratory within a children's hospital. Participants: Seventeen manual wheelchair users (N=17; 6 female, 11 male; mean age: 17.2 years, mean age at SCI onset: 11.5 years) with pediatric-onset SCI (levels: C4-T11) and International Standards for Neurological Classification of SCI grades: A (11), B (3), C (2), and N/A (2). Interventions: Not applicable. Main Outcome Measures: Acromioclavicular, sternoclavicular, and glenohumeral angles and ranges of motion, and glenohumeral forces and moments. Results: We observed a decrease in maximum acromioclavicular upward rotation (ß [95% confidence interval {CI}]=3.02 [0.15,5.89], P=.039) and an increase in acromioclavicular downward/upward rotation range of motion (ß [95% CI]=0.44 [0.08,0.80], P=.016) with increasing age at SCI onset. We found interactions between age at onset and years of use for maximum glenohumeral abduction (ß [95% CI]=0.16 [0.03,0.29], P=.017), acromioclavicular downward/upward rotation range of motion (ß [95% CI]=-0.05 [-0.09,-0.01], P=.008), minimum acromioclavicular upward rotation (ß [95% CI]=-0.34 [-0.64,-0.04], P=.026). A decrease in glenohumeral internal rotation moment (ß [95% CI]=-0.09 [-0.17,-0.009], P=.029) with increasing years of use was found. Conclusions: Age at injury and the years of wheelchair use are associated with shoulder complex biomechanics during wheelchair propulsion. These results are noteworthy, as both age at SCI onset and years of wheelchair use are considered important factors in the incidence of shoulder pain. These results suggest that investigations of biomechanical changes over the lifespan are critical.

Pain, pain interference, social and school/work functioning in youth with spinal cord injury: A mediation analysis.

Context/Objective: The objective of the present study was to investigate the effects of pain severity, pain interference and social functioning in a serial multiple mediator model predicting school/work functioning in youth with spinal cord injury (SCI) from their perspective.Design: Explanatory or mechanistic study.Setting: Pediatric specialty hospital.Participants: 125 youth with SCI ages 8-24.Outcome Measures: The Pain Severity Item and Pain Interference Scale from the PedsQL™ Spinal Cord Injury Module, and the Social Functioning and School/Work Functioning Scales from the PedsQL™ 4.0 Generic Core Scales Short Form SF15 were completed.Results: Hierarchical multiple regression and serial multiple mediator model analyses were conducted to test the percent variability accounted for and the mediating effects of pain interference and social functioning in the association between pain severity and school/work functioning. Pain predictive effects on school/work functioning were serially mediated by pain interference and social functioning. In a predictive analytics model conducted with hierarchical multiple regression analysis, age, sex, pain, pain interference and social functioning accounted for 45% of the variance in youth-reported school/work functioning (P < 0.001), demonstrating a large effect size.Conclusion: The mechanisms of the predictive effects of pain severity on school/work functioning in youth with SCI are explained in part by the serial multiple mediator effects of pain interference and social functioning. Identifying the multiple mediators of SCI pain on school/work functioning from the perspective of youth with SCI may facilitate future clinical research and practice to ameliorate impaired daily functioning and improve overall well-being.

Evaluation of the International Spinal Cord Injury Bowel Function Basic Data Set Version 2.0 in Children and Youth With Spinal Cord Injury.

OBJECTIVES: To establish the utility and feasibility of the International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 in pediatric SCI populations. METHODS: This was a noninterventional, repeated measure design conducted in Pennsylvania, Maryland, Illinois, Kentucky, and South Carolina. The International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 was administered repeatedly, twice at the point of care and once over the phone. Time to complete the data set was recorded. Inter- and intrarater reliability was examined by intraclass correlation coefficients (ICC) with 95% confidence intervals (CI), and agreement between the bowel function basic data set variables and medical records was calculated using percentages. Intrarater reliability involved the same person administering the data once at the point of care and once over the phone. RESULTS: Forty-one children/youth ages 1 to 20 years participated in this study. Average time to complete the data set was 5.17 minutes. Interrater reliability was good to excellent (ICC ≥ 0.75) for most variables. Five variables had moderate interrater reliability (ICC = 0.05-0.74) and three had poor interrater reliability (ICC < 0.05). With the exception of one variable that had poor intrarater reliability (constipating agent, ICC = 0.00) and one that approached moderate reliability (digital evacuation, ICC = 0.74), intrarater reliability was good to strong for every bowel variable (ICC = 0.88-1.00). Only 12 (32%) medical records had explicit documentation of one or more of the variables on the Basic Bowel Function Basic Data Set V2.0. CONCLUSION: The results support future research with a larger and more diverse sample of children with SCI to build upon the psychometric work described herein.

PedsQL™ Spinal Cord Injury Module: Reliability and Validity.

OBJECTIVES: The objective was to report on the initial measurement properties of the Pediatric Quality of Life Inventory™ (PedsQL™) Spinal Cord Injury (SCI) Module in youth with SCI from the youth and parent perspectives. METHODS: PedsQL™ SCI Module and PedsQL™ 4.0 Generic Core Scales SF15 were completed in a multisite national study by 166 youth ages 8 to 25 years and 128 parents of youth ages 5 to 23 years. Data from the PedsQL™ Generic Core Scales were compared with an age- and sex-matched healthy control sample. Factor analysis was conducted to determine the factor structure of the items. RESULTS: In addition to a Total Scale Score, nine unidimensional scales were derived measuring daily activities, mobility, bladder function, bowel function, pressure injury, pain interference, social participation, worry bladder bowel, and worry social. The PedsQL™ SCI Module evidenced excellent reliability for Total Scale Scores (youth self-report, α = 0.93; parent proxy-report, α = 0.93) and acceptable reliability for the nine individual scales (youth self-report, α = 0.71-0.83; parent proxy-report, α = 0.67-0.87). Intercorrelations with the Generic Core Scales supported construct validity with medium to large effect sizes (most ps < .001). Factor analysis supported the unidimensionality of the nine individual scales. PedsQL™ Generic Core Scales comparisons to healthy controls demonstrated significantly impaired generic health-related quality of life in youth with SCI with large effect sizes. CONCLUSION: The PedsQL™ SCI Module Scales demonstrated acceptable measurement properties and may be utilized as standardized scales to assess SCI-specific concerns and problems in clinical research and practice in youth with SCI.

Coping, Social Support, and Caregiver Well-Being With Families Living With SCI: A Mixed Methods Study.

OBJECTIVES: To explore coping, problem solving, social support, and well-being among family caregivers of adults with spinal cord injury (SCI). METHODS: This was a mixed methods study (qualitative interviews and standardized surveys) with a diverse sample of 39 adults with SCI and their caregivers from four rehabilitation hospitals in the United States, including one Veterans Affairs (VA) hospital. Cluster analysis was used to explore whether distinct profiles of caregivers could be identified, and it was used in conjunction with qualitative data to explore patterns in well-being. Measures of well-being included leisure time satisfaction, social integration, anxiety, depression, physical health complaints, caregiver burden, and quality of life. RESULTS: The importance of individual and extra-individual resources, namely coping and social support, emerged from early qualitative analyses and guided subsequent mixed methods examination of the data. A cluster analysis yielded three caregiver profiles: (1) effective problem solvers with moderate satisfaction with social support, (2) mixed problem solvers with stronger negative orientations and mixed satisfaction with social support, and (3) low endorsers overall. Profiles helped us explore patterns across our data set and efficiently identify differences in caregiver social support, coping, well-being, and unmet needs. CONCLUSION: Data echo the need for multimodal interventions aimed at skill development, respite options, and screening, support, information, and referral around mental health and burden. SCI care and rehabilitation programs should consider incorporating strategies for bolstering effective caregiver problem-solving skills, reducing negativity and ambivalence, and enhancing social support.

Biological Sex-Related Differences in Glenohumeral Dynamics Variability during Pediatric Manual Wheelchair Propulsion.

Shoulder pain and pathology are extremely common in adult manual wheelchair users with spinal cord injury (SCI). Within this population, biological sex and variability in shoulder joint dynamics have been shown to be important contributors to both shoulder pain and pathology. Sex-related differences in shoulder dynamics variability during pediatric manual wheelchair propulsion may influence a user's lifetime risk of shoulder pain and pathology. The purpose of this study was to assess the influence of biological sex on variability in three-dimensional (3-D) glenohumeral joint dynamics in pediatric manual wheelchair users with SCI. An inverse dynamics model computed 3-D glenohumeral joint angles, forces, and moments of 20 pediatric manual wheelchair users. Levene's tests assessed biological sex-related differences in variability. Females exhibited less variability in glenohumeral joint kinematics and forces, but greater variability in joint moments than males. Evaluation of glenohumeral joint dynamics with consideration for biological sex and variability strengthens our interpretation of the relationships among shoulder function, pain, and pathology in pediatric manual wheelchair users.Clinical Relevance- Female pediatric manual wheelchair users may be at an increased risk of shoulder repetitive strain injuries due to decreased glenohumeral joint motion and force variability during propulsion. This work establishes quantitative methods for determining the effects of biological sex on the variability of shoulder joint dynamics.

The Influence of Sex on Upper Extremity Joint Dynamics in Pediatric Manual Wheelchair Users With Spinal Cord Injury.

INTRODUCTION: Manual wheelchair propulsion is a physically demanding task associated with upper extremity pain and pathology. Shoulder pain is reported in over 25% of pediatric manual wheelchairs users, and this number rises over the lifespan. Upper extremity biomechanics in adults has been associated with shoulder pain and pathology; however, few studies have investigated upper extremity joint dynamics in children. Furthermore, sex may be a critical factor that is currently unexplored with regard to pediatric wheelchair mobility. OBJECTIVES: To investigate differences in upper extremity joint dynamics between pediatric male and female manual wheelchair users with spinal cord injury (SCI) during wheelchair propulsion. METHODS: Novel instrumented wheelchair hand-rims synchronized with optical motion capture were used to acquire upper extremity joint dynamics of 20 pediatric manual wheelchair users with SCI (11 males, 9 females). Thorax, sternoclavicular, acromioclavicular, glenohumeral, elbow, and wrist joint kinematics and kinetics were calculated during wheelchair propulsion. Linear mixed models were used to assess differences between sexes. RESULTS: Females exhibited significantly greater peak forearm pronation (p = .007), normalized wrist lateral force (p = .03), and normalized elbow posterior force (p = .04) than males. Males exhibited significantly greater peak sternoclavicular joint retraction (p < .001) than females. No significant differences between males and females were observed for the glenohumeral joint (p > .012). CONCLUSION: This study found significant differences in upper extremity joint dynamics between sexes during manual wheelchair propulsion. Our results underscore the importance of considering sex when evaluating pediatric wheelchair mobility and developing comprehensive wheelchair training interventions for early detection and prevention of upper extremity pain and pathology.

A Primary Care Provider's Guide to Pediatric Spinal Cord Injuries.

Spinal cord injury (SCI) in youth presents with unique manifestations and complications as compared to adult-onset SCI. The primary care clinician must consider the physical, physiological, cognitive, and psychological changes transpiring during childhood and adolescence. Physical changes include increasing size, weight, and bladder volume. Physiologic considerations include decreasing heart rate and increasing blood pressure with age. Cognitive issues include communication, executive functioning, and self-management skills. Lastly, psychological processes involve emotional functioning and establishment of self-identify and autonomy in the context of life with SCI.

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.

Understanding transition for youth with spinal cord injury: Youth and caregiver perceptions.

Objective: The purpose of this study is to understand facilitators of and barriers to achieving positive transition results among youth with spinal cord injury (SCI), and to identify areas for intervention to improve transition outcomes. Design: This study utilized qualitative methods and analysis was completed using Interpretive Phenomenological Analysis. Participants: Participants included adolescents (n = 9, range = 13-18 years old), young adults (n = 14, range = 22-30 years old) with an SCI, and their respective caregivers (n = 17). Results: The majority of participants had paraplegia (78%) and complete injuries (52%). The majority of caregivers were mothers (88%). Two primary themes were identified: Facilitators of Transition and Barriers to Transition. From these, five subthemes were developed for each category. Conclusion: Youth with SCI and caregivers would benefit from organizations offering dynamic and progressive care options including social reintegration programs, peer-mentoring opportunities, and programs to teach individuals with SCI and families ways to develop motivation, resilience, and independent living skills. Last, better communication among healthcare providers and an increase of interdisciplinary and accessible adult healthcare facilities would foster greater transition successes for individuals with SCI.

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.

The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set.

Study design: International focus groups. Objectives: The objective of this project was to develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set. Methods: A focus group of experts in pediatric and adult SCI, and contributors of the existing adult International SCI Adult A&P Basic Data Set convened to develop an initial draft of the data set, which was iteratively refined over a 12 month period based on relevant literature and existing outcome measures that evaluate pediatric activity and participation. The draft was reviewed and approved by the larger project working group and then distributed to the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups for review. Feedback received was considered before the final data set was approved. Results: The International SCI Pediatric A&P Basic Data Set is comprised of 13 variables: administration date, mobility, dressing, feeding, toileting, communication, family outings, spending time with friends, being out with friends, participating in team or club activity, paid work, dating, and physical activity. It is intended for children between 6 and 17 years of age, who have been discharged from initial rehabilitation/hospitalization for a minimum of 3 months. Conclusion: The International SCI Pediatric A&P Basic Data Set was developed to standardize the recording of a minimal amount of information about activities and participation in children with SCI. Further work on reliability and cultural validation is needed. Sponsorship: This study was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).

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.

Patterns of coping among caregivers of children with spinal cord injury: Associations with parent and child well-being.

INTRODUCTION: Few studies have investigated how caregivers manage stressors associated with their child's spinal cord injury (SCI) and how these patterns relate to their child's coping and adjustment. The current study explored empirically derived coping profiles among caregivers of youth with SCI and the relation of these patterns to parent and youth psychosocial outcomes. METHOD: This was a cross-sectional survey of 318 children (ages 1 to 18) and a primary caregiver. Participants completed measures assessing demographics, coping, quality of life (QOL), anxiety, and depression. We utilized hierarchical and nonhierarchical cluster analyses to identify unique coping patterns and one-way analysis of variance with control variables to assess relations between parental coping and psychosocial well-being. RESULTS: The analyses produced 3 parent coping clusters, which included avoidant (n = 47), constructive (n = 119), and adjusted/low (n = 152). ANCOVAs revealed that parents in the avoidant cluster, who utilized disengagement and blaming strategies, had significantly worse mental health symptoms compared to the constructive and adjusted low coping clusters. Specifically, avoidant coping was significantly related to increased symptoms of caregiver depression (p < .001) and anxiety (p < .001) as well as children's self-report of anxiety (p = .002), depression (p < .005) and emotional QOL (p < .001). DISCUSSION: These findings highlight the importance of fostering constructive and positive coping for both the children who face chronic illness and their caregivers. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Development of the Parent Forum: An in-person approach to supporting caregivers of youth with spinal cord injury.

Context/Objective: Describe development, implementation, review, and redesign of a hospital-based, in-person psychoeducational intervention for caregivers of youth with spinal cord injury (SCI) ages 7-17. Design: Process evaluation/case study to describe intervention development, as well as preliminary evaluation data. Setting: Pediatric specialty hospital. Participants: 41 caregivers of youth with SCI. Interventions: Caregivers attended an in-person intervention ("Parent Forum"), after which they were randomized into two groups: one received monthly phone calls from a mental health professional and the other services as usual. Caregivers were invited to attend a second Parent Forum one year later. The current paper focuses solely on the Parent Forum components. Outcome Measures: Caregiver problem solving, study-specific satisfaction questions, and qualitative focus groups. Results: After consulting with multiple stakeholders (including caregivers, clinicians, and researchers), the first Parent Forum was designed to focus on caregiver health/well-being. While caregivers from Parent Forum I reported greater positive problem solving and relatively high satisfaction scores, they also reported wanting more time together and more discussion of their children's health. We redesigned Parent Forum II to incorporate this feedback which yielded positive results, particularly during focus groups. Conclusion: The purpose of this manuscript was to share our development process to inform other teams engaged in intervention design for this or similar populations. Our experience emphasized the need to not only involve multiple stakeholders, but to pilot test intervention components, and be open to modifying them after receiving participant feedback. The final intervention model yielded positive reactions, but also emphasized the need for ongoing caregiver support.

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.