Caroline J. Anderson

Long-term outcomes and life satisfaction of adults who had pediatric spinal cord injuries

OBJECTIVE To determine long-term outcomes and life satisfaction of adults who sustained pediatric spinal cord injury (SCI). DESIGN Structured interview of adults who were 25 years or older who had pediatric SCI. SETTING Community. PARTICIPANTS A convenience sample of 46 patients from a total of 81 patients who received care in an SCI program: 1 refused participation, 4 died, and 30 were lost to follow-up. MAIN OUTCOME MEASURES A structured questionnaire including physical, psychosocial, and medical information. The Craig Handicap Assessment and Reporting Technique and two measures of life satisfaction were also administered. RESULTS Participants were 25 to 34 years old, mean 27 years. Thirty-two had tetraplegia and 14 had paraplegia. Thirty-one were men. Mean years of education was 14. Fifty-four percent were employed, 48% lived independently, and 15% were married. Life satisfaction was associated with education, income, satisfaction with employment, and social/recreation opportunities, and was inversely associated with some medical complications. Life satisfaction was not significantly associated with level of injury, age at injury, or duration of injury. CONCLUSIONS Individuals who had pediatric SCI, much like adult-onset SCI, have the greatest opportunity for a satisfying adult life if rehabilitation emphasizes psychosocial factors such as education, employment, and long-term health management.

Adults with pediatric-onset spinal cord injury: part 2: musculoskeletal and neurological complications.

Abstract Objective: To determine the prevalence of musculoskeletal and neurological complications of adults with pediatric-onset spinal cord injuries (SCI), and their association with demographic, impairment, and functional limitation factors. Method: Structured interview including standardized measures. Participants: Individuals who sustained SCI at < age 18 years and were > age 24 years at interview. Outcome measures: Prevalence of musculoskeletal and neurological complications: fractures during the past 3 years; scoliosis; heterotopic ossification; hip dislocation or contractures; ankle contractures or pain; shoulder pain; elbow contractures or pain; pain at other sites; neurological deterioration; syringomyelia; and spasticity since injury. Results: The 21 6 individuals who were interviewed had mean age at injury of 1 4 years and mean age at follow-up of 29 years. Most common complications were pain at any site (69%), spasticity (57%), shoulder pain (48%), scoliosis (40%), hip contractures (23%), and back pain (22%). There were no statistically significant associations between gender and the complications. Whites were more likely than nonwhites to experience pain. Younger age at injury was significantly associated with scoliosis and hip subluxation, and older age at injury was associated with ankle pain and spasticity. Older age at follow-up and longer duration of injury were both associated with elbow and shoulder pain, fractures, and neurological deterioration. Longer injury duration was also associated with hip subluxation and scoliosis. Ankle pain, elbow contractures, and spasticity were more common in those with tetraplegia, and hip contractures were associated with paraplegia. American Spinal Injury Association motor scores were significantly lower in those with elbow contractures and spasticity, and significantly higher in those with hip contractures and neurological deterioration. Conclusion: Musculoskeletal and neurological complications are common sequelae among adults with pediatric-onset SCI. Demographic, impairment, and functional limitation factors are associated with these complications and can identify at-risk individuals.

Adults with pediatric-onset spinal cord injury: part 1: prevalence of medical complications.

Abstract Objective: To determine the prevalence of medical complications of adults with pediatric-onset spinal cord injury (SCI) and their association with demographic, impairment, and functional limitation factors. Method: Structured interview including standardized measures. Participants: Individuals who sustained spinal cord injuries at age 18 years or younger and were 24 years of age or older at interview. Outcome Measures: Prevalence of medical complications: Urinary tract infections (UTI) requiring intravenous antibiotics or hospitalization (severe UTI), pressure ulcers, hemorrhoids and rectal bleeding, chronic medical conditions, and hospitalizations in the past 3 years. Urinary stones, orchitis or epididymitis, pneumonia, ventilatory assistance, thromboembolism, and latex allergy since injury. Current experience with UTI, bladder and bowel incontinence, bowel program length, constipation or diarrhea, dysreflexia, and hyperhidrosis. Results: Two hundred sixteen individuals were interviewed, with a mean age of injury of 1 4 years and a mean age at follow-up of 29 years. Most commonly experienced complications were UTI (74%), bowel incontinence (63%), pressure ulcers (44%), autonomic dysreflexia (42%), and respiratory complications (33%). Pressure ulcers were more common in men and latex allergy more common in women. Age at injury was not associated with any of the complications. Older age at interview was associated with orchitis or epididymitis, bowel incontinence, respiratory complications, thromboembolism, and chronic medical conditions; longer duration of injury was associated with these same complications, except for bowel incontinence. Greater neurologic impairment was related to UTI, severe UTI, stones, bowel incontinence, respiratory complications, autonomic dysreflexia, hyperhidrosis, latex allergy, and pressure ulcers. With the exception of latex allergy and UTI, Functional Independence Measure (FIM) scores were associated with the same factors as neurologic impairment. Conclusions: Medical complications are common sequelae for adults with pediatric-onset SCI. Demographic, impairment, and functional limitation factors are associated with these complications and can be used to identify at-risk individuals.

Life Satisfaction In Adults With Pediatric-Onset Spinal Cord Injuries

Abstract Objective: To determine the level of life satisfaction of adults with pediatric-onset spinal cord injuries (SCI) and the factors associated with life satisfaction. Method: A structured interview including standardized measures. Participants: Participants were individuals who sustained SCI at age 18 years or younger, were 24 years of age or older at interview, did not have significant brain injury, and were living in the United States or Canada. Outcome measures: A structured interview, the Functional Independence Measure (FIM), the Craig Handicap Assessment and Reporting Technique (CHART), the Short-Form 12 (SF-12), and the Satisfaction with Life Scale (SWLS). Results: Two hundred sixteen individuals were interviewed. Mean age at injury was 14 years, mean age at interview was 29 years, and mean duration of injury was 14 years. The mean SWLS score was 23.6, and the median score was 25. There was not a significant difference between men and women, but those with tetraplegia were significantly less satisfied than were those with paraplegia. A regression model identified age at injury, community mobility (CHART), marital status, use of street drugs, perceived mental health (SF-12), and medical complications as predictors of life satisfaction. Other factors strongly associated with SWLS were employment, income, independent living, FIM total plus physical and sociocognitive domain scores, perceived physical health (SF-12), and CHART total plus the subscales of physical independence, cognitive independence, and occupation. Conclusions: Life satisfaction in adults with pediatric-onset SCI is associated with demographic, injury-related, and functional limitation factors, as well as with health status and community integration outcomes.

Adults with pediatric-onset spinal cord injuries: part 3: impact of medical complications.

Abstract Objective: To determine the impact of medical complications on adult outcomes of individuals with pediatric-onset spinal cord injury (SCI). Method: Structured interview including standardized measures. Participants: Individuals who sustained SCI at age 1 8 years or younger and were 24 years of age or older at interview. Outcome Measures: A structured interview covering employment, independent living and driving, and marriage. Standardized measures include the Craig Handicap Assessment and Reporting Technique (CHART), the Short Form (SF-12), and the Satisfaction with Life Scale (SWLS). Results: Two hundred sixteen individuals were interviewed, with a mean age at injury of 14 years and a mean age at follow-up of 29 years. Of all the complications, pressure ulcers, severe urinary tract infection (UTI), and spasticity had the greatest impact on adult outcomes. Pressure ulcers were statistically related to all main outcomes. Severe UTI was statistically associated with all the outcomes except for marriage. Spasticity was associated with all the measured outcomes, except for marriage and life satisfaction. Life satisfaction was most significantly associated with severe UTI, pressure ulcers, pain, and respiratory complications. Conclusion: Medical complications significantly affect adult outcomes of individuals with pediatric-onset SCI.

Anxiety and depression in children and adolescents with spinal cord injuries

Aim  To determine the levels of anxiety and depression in young people with spinal cord injuries (SCI) and their associated factors and outcomes.

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

Stability of Transition to Adulthood Among Individuals With Pediatric-onset Spinal Cord Injuries

Abstract Background/Objective: Cross-sectional studies have provided information about the outcomes of adults with pediatric-onset spinal cord injuries (SCIs), but there has been no information about the stability of those outcomes over time. The purpose of this study was to assess the stability of independent living, employment, and life satisfaction and to determine factors associated with stable, successful outcomes. Methods: Structured interviews of individuals who had sustained an SCI at age 18 years or younger and were 24 years or older at first interview. The primary standardized measures used include the Functional Independence Measure, Craig Handicap Assessment and Recording Technique (CHART), Short-Form 12 measure of perceived health, and the Satisfaction with Life Scale. Results: One hundred sixty-six individuals had 3 consecutive annual interviews. Mean age at interview was 29 years (range, 24-36 years). Of this group, 64% lived independently at the first interview, and 90% of those continued to live independently; 64% were employed at first interview, of which 83% continued to be employed; and 48% reported life satisfaction at the first interview, and 84% of these continued to be satisfied. Factors most closely associated with stable independent living were CHART subscales of physical independence, mobility, and occupation. Factors associated with stable employment were sex, race, independent living, CHART mobility, and cognitive independence. Factors associated with stable life satisfaction were CHART occupation subscale and fewer pressure ulcers. Conclusions: Many individuals with pediatric-onset SCI achieve successful, stable adult outcomes. The factors associated with that success can help us improve rehabilitation for future patients.

Unique issues in pediatric spinal cord injury.

Spinal cord injuries are devastating events, and they are particularly tragic when they affect children or adolescents who have barely had an opportunity to experience life. Of the approximately 10,000 individuals who sustain spinal cord injury each year in the United States, 3% to 5% occur in individuals younger than 15 years of age and approximately 20% occur in those younger than 20 years of age (Nobunaga, Go, & Karunas, 1999). Because of the growth and development inherent in children and adolescents and the unique manifestations and complications associated with spinal cord injuries, management must be developmentally based and directed to the individual’s special needs (Vogel, 1997). The many unique facets of pediatric spinal cord injuries are addressed in this article. They clearly delineate the need for care that is responsive to the dynamic changes that occur with growth and development. The multidisciplinary team, combined with a focus on family-centered care, is essential in pediatric spinal cord injuries.

Spinal cord injuries in children and adolescents: a review.

Abstract This introductory review provides an overview of pediatric-onset spinal cord injury, emphasizing unique clinical and epidemiologic features, pathophysiology, medical and musculoskeletal complications, and psychosocial and management issues. Developmental factors influence the approach to bowel and bladder programs, mobility, patient education, and management of complications. Rehabilitation goals must be set for each developmental stage, with the final goal being that of a satisfying and productive adult life.