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.

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.

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.

Poor sleep in adults with pediatric-onset spinal cord injury: associations with pain, health, and activity.

OBJECTIVE: To investigate medical complications that increase risk for poor sleep in adults with pediatric-onset spinal cord injury (SCI) and explore the relation of poor sleep to psychosocial outcomes. METHOD: This was a cross-sectional study of individuals with pediatric-onset SCI interviewed between 2011-2015. Participants were recruited from a pediatric specialty hospital and answered questions about demographics, injury characteristics, pain, and medical complications and completed standardized outcome measures, including: Pittsburgh Sleep Quality Index, SF12v2 Health Survey, Craig Handicap Assessment and Recording Technique (CHART), and Subjective Happiness Scale. RESULTS: The study included 180 participants between the ages of 19 and 51 (M=34.20 y; SD=7.28) who sustained their SCI before the age of 19 (M=13.48y; SD=4.59). Participants were predominantly male (62%) and Caucasian (84%). A majority had tetraplegia (56%) and complete injuries (74%). Poor sleep occurred with greater frequency in those with tetraplegia and who were unemployed. Neck (OR=2.80, P = 0.001), shoulder (OR=2.15, P = 0.011), arm (OR=3.06, P = 0.004), and lower extremity pain (OR=2.72, P = 0.004) were associated with increased risk of poor sleep. In a logistic regression analysis, chronic medical conditions and continuous pain were most likely to be associated with poor sleep. Individuals with poor sleep reported lower levels of mobility, perceived health, and subjective happiness. CONCLUSION: Pain and secondary complications significantly increase the odds of poor sleep. Furthermore, poor sleep is associated with decreased mobility and measures of well-being. Preventive measures to reduce risk factors and improve sleep quality after pediatric-onset SCI should be considered.

Sexuality in Pediatric Spinal Cord Injury.

Sexual development and sexuality in youth with pediatric spinal cord injury (SCI) are critical areas clinicians must be aware of and discuss when working with youth and their families. In addition to the general sexuality issues and challenges of adolescence and adult development, youth with SCI face unique physical and psychosocial issues. The goal of this article is to provide a developmentally based discussion of sexuality in individuals with SCI from infancy through emerging adulthood. An overview of psychosocial issues related to sexual development and sexuality are presented for each stage of sexual development along with recommendations for clinical practice, including patient and caregiver education and counseling. In order to establish expectations for youth with SCI, long-term outcomes related to sexuality and fertility of adults with pediatric-onset SCI are presented.

Sleep, well-being, and psychological symptoms in adults with pediatric-onset spinal cord injury.

OBJECTIVE: To examine the prevalence of poor sleep quality in adults with pediatric-onset spinal cord injury (SCI) and to assess the clinical correlates. METHOD: Participants completed interviews that included demographic information and standardized measures of sleep (Pittsburgh Sleep Quality Index), physical (12-item Short-Form Health Survey, Version 2), mental (Beck Anxiety Inventory and Patient Health Questionnaire), and psychosocial well-being (Satisfaction With Life Scale). The study included 177 individuals between the ages of 19 and 50 years (M = 33.5 years, SD = 7.1) who sustained a, SCI prior to age 19 (M = 13.5 years, SD = 4.6) and had been injured for at least 1 year (M = 19.5 years, SD = 8. 2). Participants were recruited from 1 of 3 pediatric SCI programs in the United States and were predominantly male (62%) and White (84%). RESULTS: Sleep difficulties were fairly common, with half of participants self-reporting poor sleep quality within the last month (n = 91 [51.4%]). Both increased age (r = .20, p = .008) and tetraplegia, F(1, 175) = 6.62, p = .011, were significantly associated with poor sleep. Activity-interfering pain (r = .57, p < .001) and general health (r = .37, p < .001) were also strongly associated with poor sleep. Even after accounting for age, injury level, and pain as control variables, sleep quality explained a small, but significant, portion of the variance in depression (R2 = .06, p < .001) and anxiety (R2 = .04, p = .005), but not life satisfaction (R2 = .02, p = .075). CONCLUSION: These results suggest that adults with pediatric-onset SCI report more sleep difficulties than the standardization sample and that sleep is significantly associated with physical and psychological functioning. Consequently, better measures to detect and treat sleep problems among those with pediatric-onset SCI are recommended.

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.

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.

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.

Long-term outcomes of adults with pediatric-onset spinal cord injuries as a function of neurological impairment.

OBJECTIVE: To identify outcomes of participation, life satisfaction, and medical complications as a function of impairment in adults with pediatric-onset spinal cord injury (SCI). METHODS: Study participants were adults who sustained SCI at age 18 years or younger and were interviewed at age 24 years or older (M = 26.9, SD = 3.5). The telephone interview included a questionnaire and several standardized measures: FIM instrument (FIM), Craig Handicap Assessment and Reporting Technique (CHART), SF-12 Health Survey, and Satisfaction with Life Scale. Using the International Standards for Neurological Classification of Spinal Cord Injury and the American Spinal Injury Association (ASIA) Impairment Scale (AIS), subjects were grouped into four impairment categories: C1-C4 ABC, C5-C8 ABC, T1-L4 ABC, and AIS D. RESULTS: Of the 410 participants, 62% were male, 54% had tetraplegia, 70% had AIS A lesions, and average age at injury was 14 years (SD = 4.3). Of the 407 subjects who had complete neurological information, 59 had C1-C4 ABC, 140 had C5-C8 ABC, 168 had T1-L4 ABC, and 40 had AIS D lesions. The outcomes were delineated for education, employment, independent living and driving, marriage, participation, medical complications, health-related quality of life, and global life satisfaction, in addition to the ASIA motor score and FIM motor scores, for each of the four impairment groups. CONCLUSIONS: This information should help focus interventions that facilitate positive outcomes in relationship to the severity of impairment. In addition, these data can provide a level of expectation about long-term outcomes for newly injured children and their parents.

Change in life satisfaction of adults with pediatric-onset spinal cord injury.

OBJECTIVES: To examine the change in life satisfaction over time and potential contributing factors among adults with pediatric-onset spinal cord injury (SCI). DESIGN: Prospective dynamic cohort study. SETTING: Community. PARTICIPANTS: Individuals who sustained a SCI before age 19 years (N=278) were initially interviewed at age 24 years or older and followed on an annual basis between 1996 and 2006. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: A structured telephone interview was conducted to obtain the measures of Satisfaction with Life Scale (SWLS), physical independence, participation, and psychologic functioning. The hierarchical linear modeling was performed to characterize individual person-specific time paths and estimate the average rate of change in SWLS over time. RESULTS: A total of 1171 interviews were conducted among 184 men and 94 women (89% white; baseline age, 27.1+/-3.4 y; baseline years since injury, 12.8+/-4.9). The initial SWLS score averaged 24.2 and was estimated to increase by 0.14 a year (P=.10). After adjusting for potential confounding factors, the overall life satisfaction was significantly higher for women and those who were married/living with a partner; were employed/students; did not use illicit drugs; and scored high in the FIM, the mental health component of the Short Form-12, and the social integration subscale of the Craig Handicap Assessment and Reporting Technique. The rate of change in life satisfaction did not differ significantly by any personal, medical, and psychosocial characteristics under investigation. CONCLUSIONS: The study findings suggest that people who feel unsatisfied with life initially are likely to stay unsatisfied over time if the critical determinant factors remain unchanged in their life. To minimize the risk of decreasing life satisfaction, several modifiable risk factors identified in the present study could be targeted for intervention.

Coping with spinal cord injury: strategies used by adults who sustained their injuries as children or adolescents.

OBJECTIVE: To identify the coping strategies used by adults with pediatric-onset spinal cord injuries (SCI) and to determine how these coping strategies were related to demographics, injury-related factors, and adult outcomes. METHODS: Study Participants were adults who sustained SCI at age 18 years or younger and were interviewed at age 24 years or older. This is part of a large longitudinal study for which there were 864 eligible participants. There were 353 (41%) interviewed, 259 of which were assessed for coping skills. The telephone interview included a questionnaire and several standardized measures (Functional Independence Measure, Craig Handicap Assessment and Reporting Technique, Short-Form 12 measure of health-related quality of life, Satisfaction With Life Scale, Patient Health Questionnaire-9, and the Brief COPE adapted). RESULTS: Of 259 participants, 62% were male and 58% had tetraplegia. The average age at injury was 14 years (0-18 years) and average age at interview was 30 years (24-42 years). Of 8 coping strategies assessed, 99% of participants used acceptance, 94% used positive reframing, 93% used active coping, 89% used emotional support, 89% used humor, and 74% used religion. The negative coping skills of behavioral disengagement and substance use were used by 28% and 15%, respectively. A hierarchical regression analysis was used to predict higher adult life satisfaction by using the positive coping strategies of seeking emotional support, acceptance, and religion; it was negatively associated with substance use. CONCLUSIONS: Positive coping strategies tend to be used by a majority of adults with pediatric-onset SCI, and several coping styles are associated with greater life satisfaction.

Depression in adults who sustained spinal cord injuries as children or adolescents.

STUDY DESIGN: Interview survey. OBJECTIVE: To assess depression in adults with pediatric-onset spinal cord injuries (SCI) and to determine demographic and injury-related factors, and outcomes associated with depression, and to determine which other outcomes are associated with depression. METHODS: Subjects were adults with pediatric-onset SCI who sustained SCI at age < or =18 years and were interviewed at age > or =24 years. This is part of a longitudinal study for which there were 864 eligible participants; 353 (41%) were interviewed. Of these, 232 were assessed for depression. A telephone interview was conducted that included a structured questionnaire and standardized measures (Functional Independence Measure, Craig Handicap Assessment and Reporting Technique, Short-Form 12 measure of health-related quality of life, Satisfaction with Life Scale, and Patient Health Questionnaire-9 to screen for depression). RESULTS: Twenty-seven percent reported depressive symptoms ranging from mild to severe, and 7% reported having suicidal thoughts within the last 2 weeks, and 3% reported symptoms consistent with probable major depressive disorder (MDD). Depression was not significantly associated with any demographic factors but it was associated with incomplete injury (P = 0.013). Depression was also associated with many participation outcomes, health-related quality of life, life satisfaction, and medical complications. CONCLUSIONS: Depression is a significant problem among adults with pediatric-onset SCI and is associated with poorer outcomes and lower quality of life. These findings should be addressed as clinicians prepare children and adolescents with SCI to transition to adulthood.

Ambulation in children and youth with spinal cord injuries.

OBJECTIVE: To delineate the natural history of ambulation of children and youth with spinal cord injuries (SCls). DESIGN: Retrospective single-center. PARTICIPANTS/METHODS: One hundred sixty-nine subjects who sustained SCI at 18 years of age or younger and who were followed up for at least 4 years. RESULTS: Ambulation was significantly associated with age at injury and neurological impairment but not gender. Younger age at injury was associated with greater likelihood of ambulation, higher level of ambulation, and greater duration of ambulation. Lesser severity of neurological impairment was associated with greater likelihood of ambulation. Excluding ASIA D lesions, household ambulation was noted in 5% of subjects with tetraplegic, 26% with high thoracic, 30% with low thoracic, 44% with upper lumbar, and 33% with lower lumbar lesions. Of the 7 community-level ambulators with non-ASIA D lesions, none had cervical or high thoracic injuries, 3 had low thoracic, 1 had upper lumbar, and 3 had lower lumbar lesions. Using multiple regression analysis, predictive factors for ambulation were younger age at injury, total ASIA motor score, and ASIA impairment scale score. Less cumbersome orthotics were associated with higher levels of ambulation. CONCLUSION: Ambulation status is a function of neurological impairment, age at injury, and type of orthotic.