Psychosocial outcomes among youth with spinal cord injury by neurological impairment

Abstract

Objective: Examine psychosocial outcomes of youth with spinal cord injury (SCI) as a function of neurological level (paraplegia/tetraplegia) and severity (American Spinal Injury Association (ASIA) Impairment Scale (AIS)). Design: Survey research. Setting: Three pediatric SCI specialty centers in the USA. Participants: Youth with SCI ages 5-18 with neurological impairment classifications of: tetraplegia AIS ABC (tetraplegia ABC), paraplegia AIS ABC (paraplegia ABC), or AIS D. Outcome Measures: Children's Assessment of Participation and Enjoyment, Pediatric Quality of Life Inventory, Revised Children's Manifest Anxiety Scale, and Children's Depression Inventory. Results: Three hundred and forty youth participated; 57% were male; 60% were Caucasian, 21% Hispanic, 7% African-American, 2% Native American, and 3% reported "other". Their mean age was 8.15 years (standard deviation (SD) = 5.84) at injury and 13.18 years (SD = 3.87) at interview. Ninety-six youth (28%) had tetraplegia ABC injuries, 191 (56%) paraplegia ABC injuries, and 53 (16%) AIS D injuries. Neurological impairment was significantly related to participation and quality of life (QOL). Specifically, youth with paraplegia ABC and AIS D injuries participated in more activities than youth with tetraplegia ABC (P = 0.002; P = 0.018, respectively) and youth with paraplegia ABC participated more often than youth with tetraplegia ABC (P = 0.006). Youth with paraplegia ABC reported higher social QOL than youth with tetraplegia ABC (P = 0.001) and AIS D injuries (P = 0.002). Groups did not differ regarding mental health. Conclusion: Interventions should target youth with tetraplegia ABC, as they may need support in terms of participation, and both youth with tetraplegia ABC and AIS D injuries in terms of social integration.

Does functional motor incomplete (AIS D) spinal cord injury confer unanticipated challenges?

“…These researchers noted the counterintuitive nature of their findings and recommended further investigation to better understand this association, proposing that individuals with incomplete injuries are provided with less support and that their symptoms of fatigue and frustration may be more easily overlooked than are the more obvious symptoms of those with complete injuries. More recently, Riordan et al (2015) found that outcomes of youth with AIS D injuries were less favorable than youth with AIS A/B/C injuries as related to social quality of life, even with similar levels of participation; this study had a relatively small number of individuals with AIS D injuries, and the researchers indicated that future studies may shed further light on this relationship.…”

“…Other possible reasons why those with AIS D SCI may present with unexpected psychological challenges include age (tend to be older), morbidities (due to older age), unique pain characteristics, social support (do not as often require caregivers), attitudes of others (given the less visible nature of impairments), or selfappraisals (Mignogna, Christie, Holmes, & Ames, 2015). Riordan et al (2015) noted that youth with AIS D injuries tended to have the highest level of overall anxiety and depression in their study, and they proposed that youth with AIS D injuries may not feel a sense of belonging either with other youth with SCI or with able-bodied youth, which could lead to negative self-perceptions and psychosocial consequences.…”

“…Injury characteristics have traditionally been poor predictors of psychological distress and subjective quality of life (Dijkers, 1999;Post, de Witte, van Asbeck, van Dijk, & Schrijvers, 1998). This contradicts the common notion that severity of injury determines the presence of or struggle with emotional distress (Riordan, Kelly, Klaas, & Vogel, 2015). However, there are empirical findings suggesting that persons with SCI whose injuries are among the least complete (i.e., AIS D [ASIA Impairment Scale; American Spinal Injury Association, 2003]) may experience psychological challenges differently than those with more complete injuries (i.e., AIS A/B/C).…”

Pediatric Spinal Cord Injury

“…Risk of depression was increased in those who were unemployed throughout the study. Employment rates were higher in participants who were women, had advanced degrees, were married, and had less severe neurological impairment [75,77]. Occurrence of secondary health conditions such as severe urinary tract infections, autonomic dysreflexia, spasticity, or another chronic health condition decreased the odds of employment, suggesting value in targeted interventions for these conditions and in educational preparation for employment.…”

“…Up to 62 % of children with SCI reported no involvement in organized community activities [76]. Among youth with AIS A, B, and C, those with paraplegia had higher participation rates than youth with tetraplegia [77].…”