Kathleen M. Chlan

Depression in Adults Who Sustained Spinal Cord Injuries as Children or Adolescents

Abstract 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 =18 years and were interviewed at age =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 healthrelated 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

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

Abstract 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.

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

Abstract 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.

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.

Ambulation in Children and Youth With Spinal Cord Injuries

Abstract Objective: To delineate the natural history of ambulation of children and youth with spinal cord injuries (SCis). 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.

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.

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

Abstract 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.

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

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.

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.

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.