Sexual Activity in Adults with Pediatric-Onset Spinal Cord Injury: Injury, Demographic, and Lifestyle Factors.

Background: Sexual development is a complex process of understanding oneself as a sexual being. Youth with spinal cord injury (SCI) navigate the typical phases of sexual development along with the physical and psychological sequelae of an SCI. As youth with SCI progress from adolescence to emerging adulthood, sexual activity-physical intimacy and sexual intercourse-is an important milestone. Objectives: The aims of the study were to (1) describe frequency of physical intimacy among adults with pediatric-onset SCI and (2) identify injury, demographic, and lifestyle factors that predict frequency of physical intimacy. Methods: Adults with pediatric-onset SCI who were former patients within a North American pediatric hospital system (N = 277) completed a structured telephone interview that included medical and sociodemographic information and standardized measures of psychological functioning. Participants rated physical intimacy and sexual intercourse frequency on a 5-point Likert scale, with a response of monthly, weekly, or daily classified as regular frequency and never or yearly as irregular frequency. Bivariate and multivariate analyses were conducted with physical intimacy frequency as the primary outcome. Results: Of the participants, 55% engaged in physical intimacy and 49% engaged in sexual intercourse with regular frequency. In logistic regression analyses, living independently of parents, being married, and higher perceived social integration increased likelihood of regular frequency of physical intimacy. Injury severity and secondary medical complications were not significant independent predictors of frequency of physical intimacy. Conclusion: Half of adults with pediatric-onset SCI engage in regular physical intimacy; this is below the estimates for the general population. Psychosocial factors are stronger contributors to physical intimacy frequency than SCI-related factors. Health care providers and researchers should focus on barriers to social integration and development of social relationships as factors that influence physical intimacy in this population.

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.

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.

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.

Adult outcomes for children who sustained firearm-related spinal cord injuries.

OBJECTIVE: To describe the adult functional, participation, education, employment, and quality of life outcomes of children who incurred spinal cord injury (SCI) as the result of gun injuries vs. non-violent etiologies, as well as their utilization of health services. DESIGN: Retrospective-cohort study. Eligibility criteria were current age at least 18 years, at least 5 years after SCI, and injury prior to 19 years of age. After enrolling the gun injury group, we matched individuals with non-violent etiologies from the Midwest Regional SCI Model System database to the gun injury group's demographic characteristics. Adult outcomes included education level, employment, income, involvement with the criminal justice system, quality of life indicators using PROMIS and SCI-QOL item banks, and utilization of health services. PARTICIPANTS: Twenty-six participants with gun injury SCI matched with 19 participants with non-violent etiologies. RESULTS: Average age at injury was 15 years and current age was 44 years for both cohorts. Individuals from racial minority groups were over-represented in the gun injury cohort. The gun-injury cohort had lower educational attainment. Though employment rates were similar, the gun injury group had a lower income level. Both groups endorsed high average levels of function and quality of life on the PROMIS and SCI-QOL short forms. CONCLUSIONS: SCI etiology reflects racial characteristics of the sample and is associated with subsequent educational attainment and income. Rehabilitation planning should consider gun injury etiology in children not as a characteristic that determines a poor outcome, but as a risk factor for reduced educational attainment and lifetime income.

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.

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.

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).

Psychosocial and Health Outcomes of Adults With Violently Acquired Pediatric Spinal Cord Injury.

Objective: To describe the psychosocial and medical outcomes of individuals with pediatric-onset spinal cord injury (SCI) as a result of violent injuries. Methods: This was a cross-sectional study assessing adult outcomes associated with pediatric-onset SCI. Participants completed measures assessing demographics, injury characteristics, secondary conditions, and psychosocial functioning. Results: Participants included 483 adults (ages 19-51 years; M = 32.89, SD = 6.81) who sustained an SCI prior to age 19 (0-18 years; M = 14.25, SD = 4.40). Participants tended to have complete injuries (68%) and tetraplegia (53%) and were predominantly male (63%) and Caucasian (85%). The violent (n = 42) and nonviolent (n = 441) etiology groups tended to be similar in terms of gender. The violent etiology (VE) group, however, was significantly more likely to have paraplegia (χ2 = 7.45, p = .01), identify as an ethnic minority (χ2 = 5.40, p = .02), and have decreased odds of completing a college degree (odds ratio [OR], 0.40; 95% CI, 0.19-0.83). After controlling for significant covariates, individuals in the VE group were more likely to have moderate depression symptoms (OR, 3.73; 95% CI, 1.35-10.30) and significantly lower odds of economic independence (OR, 0.39; 95% CI, 0.19-0.84). The VE group was also 2 times as likely as the nonviolent group to report a pressure injury (OR, 2.04; 95% CI, 1.05-3.94) or activity interfering pain (OR, 2.34; 95% CI, 1.15-4.74). Conclusion: The results of this study reveal significantly greater psychosocial health concerns and more medical complications for individuals with violent SCI than those with nonviolent SCI. Children with an SCI from a violent etiology may warrant additional attention and services aimed at promoting stability and long-term resilience.