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.

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

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

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

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

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

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

Milestone achievement in emerging adulthood in spina bifida: a longitudinal investigation of parental expectations.

AIM: To assess changes over time in parents' expectations of adult milestone achievement (college attendance, full-time job attainment, independent living, marriage, parenthood) for young people with spina bifida, to examine how expectancies relate to actual milestone achievement, and to compare milestone achievement in emerging adults with spina bifida with that of peers with typical development. METHOD: Sixty-eight families of children with spina bifida (mean age 8y 4mo, 37 males, 31 females) and 68 families of children with typical development (mean age 8y 6mo, 37 males, 31 females) participated at Time 1. At all subsequent timepoints, parents of young people with spina bifida were asked to rate their expectations of emerging adulthood milestone achievement. At Time 7, when participants were 22 to 23 years old, milestone achievement was assessed. RESULTS: Parents of young people with spina bifida lowered their expectations over time for most milestones; parents of children with higher cognitive ability reported decreases of lower magnitude. Parent expectancies were optimistic and unrelated to actual milestone achievement. Emerging adults with spina bifida were less likely than individuals with typical development to achieve all milestones. INTERPRETATION: Optimistic parental expectations may be adaptive for children with spina bifida and their families, although it is important for families to set realistic goals. Healthcare providers serve a key role in helping families of young people with spina bifida prepare for emerging adulthood.

Testing the Utility of a Bio-Neuropsychosocial Model for Predicting Medical Adherence and Responsibility During Early Adolescence in Youth With Spina Bifida.

Objectives: The present longitudinal, multi-method, and multi-informant study examined biological, neuropsychological, and social predictors of medical adherence and responsibility among early adolescents with spina bifida (SB). Methods: Youth with SB (M age = 11.40 at Time 1) and their parents and teachers completed surveys, and families and peers completed observational assessments, at two biennial data collection time points (n = 112 for both time points). Multinomial logistic regressions tested predictors of group membership (adherent vs. nonadherent and child responsible vs. not responsible with SB medical tasks). Results: Consistent with the bio-neuropsychosocial model, several risk factors emerged for SB management. Impaired gross motor classification and low IQ were barriers to obtaining medical responsibility, and high family stress and executive dysfunction were barriers to adherence and responsibility. Conclusions: This study offered intervention targets to promote self-management and adherence for youth with SB and their families, including parent stress-management and family problem-solving.

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

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

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

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

Observed differences in social behaviors exhibited in peer interactions between youth with spina bifida and their peers: neuropsychological correlates.

OBJECTIVE: To identify differences in social behaviors in observed peer interactions between children with spina bifida (SB) and peers, and to examine neuropsychological correlates of these differences. METHOD: A total of 100 youth (aged 8-15 years) with SB and peers participated in video-recorded interaction tasks, which were coded for interaction style, affect, and collaboration. Children with SB also completed a neuropsychological test battery. RESULTS: Children with SB demonstrated less adaptive social behaviors in peer interactions, particularly within the interaction style domain. Observational items found to be different between children with SB and their peers were best predicted by social language and attention abilities. CONCLUSIONS: Children with SB exhibit a less adaptive interaction style and lower levels of social dominance but are comparable with typically developing peers on other social behaviors. The observed group differences may have a neuropsychological basis.

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

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

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

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

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

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

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

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

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.

Predictors of emotional functioning in youth after surgical correction of idiopathic scoliosis.

BACKGROUND: Patients with idiopathic scoliosis, although otherwise healthy, often have significant concerns about their self-image and appearance. In a group of juveniles and adolescents, this can impact adjustment in school, functioning in peer groups, and general sense of well-being. There are limited data to help physicians reliably and precisely identify those who are at higher risk of poor emotional adjustment even after spine deformity correction. The purpose of this study was to determine the predictors of emotional maladjustment in juvenile and adolescent patients after surgical correction of idiopathic scoliosis. METHODS: A total of 233 juveniles, mean age 11.26 ± 1.02 (range, 8 to 12) years and 909 adolescents, mean age 14.91 ± 1.61 (range, 13 to 21) years, who underwent surgical correction for idiopathic scoliosis and who were participating in a prospective longitudinal multicenter database, were enrolled in the study. Participants completed the Scoliosis Research Society-22 (SRS-22) questionnaire before surgery and 2 years postoperatively. Radiographs were used to measure Cobb angle and surface measurements were used to determine decompensation and trunk shift. RESULTS: Adolescents reported poorer mental health preoperatively (P<0.05) and 2 years postoperatively (P<0.001) than juveniles; however, both groups reported improved mental health (P<0.001) and self-image (P<0.01) postoperatively. Mental health 2 years postoperatively was predicted by preoperative self-image (P<0.05), mental health (P<0.001), and main thoracic Cobb angle (P<0.05) in the juvenile group. Within the adolescent group, mental health 2 years postoperatively was predicted by preoperative mental health (P<0.001); self-image 2 years postoperatively was predicted by preoperative mental health (P<0.01) and self-image (P<0.001). CONCLUSIONS: Self-image and mental health are significantly improved after spine deformity correction in juveniles and adolescents with idiopathic scoliosis. However, consistent with normative development, adolescents are at higher risk for emotional maladjustment than juveniles. Surgical decision making in scoliosis correction should take the emotional status of the patient into consideration.