Erin H. Kelly

Health-Related Quality of Life after Pediatric Spinal Cord Injury

OBJECTIVEnTo describe health-related quality of life (HRQOL) among youth with spinal cord injury (SCI), examine agreement between child and caregiver report HRQOL, investigate relationships between HRQOL and demographic, injury and psychological variables.nnnMETHODSnCaregivers and youth with SCI completed a pediatric HRQOL measure and mental health measures; injury information was gathered from medical records.nnnRESULTSnOne hundred and ninety-seven youth with SCI and their caregivers participated. HRQOL was associated with current age, age at injury, level of injury and child and caregiver anxiety/depression. Child mental health significantly predicted child-report HRQOL (p < .001, f(2)=1.07), whereas child (p < .001, f(2) = 0.098) and caregiver (p < .001, f(2) = 0.277) mental health both significantly predicted caregiver-report HRQOL. Agreement between child-report and caregiver-report was moderate at best, with youth rating their HRQOL as better than their caregivers.nnnCONCLUSIONnMental health of youth and caregivers is critical to HRQOL in pediatric SCI. Interventions to optimize psychological adjustment should be provided to both caregivers and youth.

Community Competence and Violently Acquired Spinal Cord Injury: Employment as a Peer Role Model

Purpose: To understand how employment as a peer role model within a rehabilitation hospital affects the development of community competence among young men and women with violently acquired spinal cord injury (VASCI). Design: A mixed-method, multiple case study design was incorporated, in which 2 cases were selected for study, including 10 individuals who were currently employed as peer role models and 10 individuals who were not. Results: Results revealed several differences between the 2 cases, as peer role models demonstrated greater knowledge and use of community resources. Furthermore, results highlighted the processes by which these changes occurred, including that peer role models had more direct exposure to resources, engaged in the act of sharing resources with others, and experienced an increased connection to positive networks. Conclusions: Findings suggest that the experience of employment as a peer role model within a rehabilitation setting may facilitate connections between individuals with VASCI and the community supports and resources necessary for successful postinjury adjustment. Implications for future research and theory are discussed.

Validity of Computer Adaptive Tests of Daily Routines for Youth with Spinal Cord Injury

OBJECTIVEnTo evaluate the accuracy of computer adaptive tests (CATs) of daily routines for child- and parent-reported outcomes following pediatric spinal cord injury (SCI) and to evaluate the validity of the scales.nnnMETHODSnOne hundred ninety-six daily routine items were administered to 381 youths and 322 parents. Pearson correlations, intraclass correlation coefficients (ICC), and 95% confidence intervals (CI) were calculated to evaluate the accuracy of simulated 5-item, 10-item, and 15-item CATs against the full-item banks and to evaluate concurrent validity. Independent samples t tests and analysis of variance were used to evaluate the ability of the daily routine scales to discriminate between children with tetraplegia and paraplegia and among 5 motor groups.nnnRESULTSnICC and 95% CI demonstrated that simulated 5-, 10-, and 15-item CATs accurately represented the full-item banks for both child- and parent-report scales. The daily routine scales demonstrated discriminative validity, except between 2 motor groups of children with paraplegia. Concurrent validity of the daily routine scales was demonstrated through significant relationships with the FIM scores.nnnCONCLUSIONnChild- and parent-reported outcomes of daily routines can be obtained using CATs with the same relative precision of a full-item bank. Five-item, 10-item, and 15-item CATs have discriminative and concurrent validity.

Psychosocial Outcomes Among Youth with Spinal Cord Injury and Their Primary Caregivers

BACKGROUNDnPast research has found youth with disabilities to experience poor psychosocial outcomes, but little is known about factors related to psychosocial health among youth with spinal cord injury (SCI).nnnOBJECTIVEnTo describe psychosocial health among youth with SCI, examine relationships between psychosocial outcomes and demographic and injury-related factors, and examine relationships between aspects of psychosocial health. Youth activity, participation, quality of life (QOL), coping, anxiety and depression, and caregiver mental health were included.nnnMETHODSnData were collected as part of a prospective study of 420 youth with SCI ages 1-18 and their primary caregivers. Activity data were also presented from a study developing a computerized adaptive testing (CAT) platform with 226 youth with SCI ages 8-21.nnnRESULTSnAlthough relationships varied by factor, youth outcomes were related to youth age, sex, age at injury/injury duration, and level/extent of injury. Caregiver mental health related to child age and age at injury. Further, relationships were uncovered between aspects of psychosocial health: aspects of youth mental health were related to youth participation and QOL, youth coping was related to youth mental health, participation, and QOL, and caregiver mental health was related to child mental health and QOL.nnnCONCLUSIONnPsychosocial outcomes relate to each other and vary by child and injury-related factors and should be understood in a comprehensive, developmental context. Identifying best measures of activity and psychosocial functioning among youth with SCI and understanding factors related to their psychosocial health is critical to improving outcomes for the pediatric-onset SCI population.

Coping and Participation in Youth With Spinal Cord Injury

BACKGROUNDnCoping and participation are important adjustment outcomes of youth with spinal cord injury (SCI). Research addressing how these outcomes are related is limited.nnnOBJECTIVEnThis cross-sectional study examined relationships between coping and participation in youth with SCI.nnnMETHODnYouth ages 7 to 18 years were recruited from 3 hospitals specializing in rehabilitation of youth with SCI. The Kidcope assessed coping strategies, and the Childrens Assessment of Participation and Enjoyment (CAPE) examined participation patterns. Point biserial and Pearson correlations assessed relationships among variables, and hierarchical multiple regression analyses examined whether coping significantly contributed to participation above and beyond significant demographic and injury-related factors.nnnRESULTSnThe sample included 294 participants: 45% female, 65% Caucasian, 67% with paraplegia. Mean age was 13.71 years (SD = 3.46), and mean duration of injury was 5.39 years (SD = 4.49). Results indicated that higher levels of social support and lower levels of self-criticism predicted higher participation in informal activities, lower levels of social withdrawal predicted participation in informal activities with a greater diversity of individuals, lower levels of blaming others predicted higher enjoyment of informal activities, and higher levels of cognitive restructuring predicted participation in formal activities with a greater diversity of individuals and in settings further from home.nnnCONCLUSIONnResults suggest higher levels of social support and cognitive restructuring and lower levels of self-criticism, social withdrawal, and blaming others predicted favorable participation outcomes. Interventions for youth with SCI that encourage higher levels of positive coping strategies and lower levels of negative and avoidant strategies may promote positive participation outcomes.

Obstacles to community participation among youth with spinal cord injury

Abstract Objective Examine caregiver-report of obstacles to community participation for youth with spinal cord injury (SCI), and explore relationships between obstacles and child, caregiver, and community characteristics. Design Two hundred and one primary caregivers of youth with SCI ages 7–17 years were interviewed at three pediatric SCI centers within a single-hospital system. Caregivers answered an open-ended question assessing obstacles to youth participation. A mixed-methods approach was incorporated, where qualitative methods analyzed caregiver-reported obstacles, and exploratory multivariate analyses examined relationships between obstacles and demographic variables. Results Caregivers were primarily mothers (74%), married (69%), employed (54%), had college experience (67%), and lived in small towns (55%). Youths mean age was 12.60 years at interview and 7.19 years at injury, 70% had paraplegia, and 55% had complete injuries. Analyses revealed that youth participation was limited by obstacles across six domains: community, disability-related, practical concerns, child-internal, social, and other. Child, caregiver, and community characteristics were related to overall report of obstacles, and report of community obstacles, disability-related obstacles, and practical concerns. Caregiver college experience and small town living predicted overall report of obstacles. Having a child injured at a younger age, caregiver college experience, and small town living predicted community obstacles. Having a child with an incomplete injury and recent medical complication predicted disability-related obstacles. Caregiver employment predicted practical concerns. Conclusion Youth from small towns, those injured younger, those with incomplete injuries, and those experiencing recent medical complications may need additional supports and resources to maximize participation. Clinicians should work with caregivers to identify and problem-solve obstacles to youth participation.

Psychosocial outcomes of children and adolescents with early-onset spinal cord injury and those with spina bifida.

Purpose: To describe psychosocial outcomes of children and adolescents with early-onset spinal cord injury (SCI) and spina bifida (SB) and identify differences between them. Methods: Eighty-three participants had acquired SCI before age 3 years (mean age 10.6 ± 3.8 yrs), and 54 had SB (mean age 11.7 ± 4.1 yrs). The participants completed standardized assessments of participation, quality of life (QOL), anxiety, and depression. Independent-sample t tests and Mann-Whitney tests were used to assess group differences. Results: Participants with SCI reported higher school QOL (P = .016) and lower anxiety with social concerns/concentration (P = .037) than did participants with SB. The subgroup of participants with SCI with paraplegia reported higher school (P = .014) and overall (P = .034) QOL, and they participated in more activities (P = .015) than participants with SB. Conclusions: Children and adolescents with SCI with paraplegia have greater school and overall QOL and participate in more activities than children and adolescents with SB. Children and adolescents with SB would benefit from increased support at school and in social participation.

Depression and anxiety in adolescents with pediatric-onset spinal cord injury

BACKGROUNDnLittle is known about depression and anxiety in adolescents with spinal cord injury (SCI).nnnOBJECTIVEnTo examine how depression, anxiety, suicidal ideation, and usage of treatment differ by age and sex among adolescents with SCI.nnnMETHODnYouth 12 to 18 years old who had acquired SCI at least 1 year prior were recruited from 3 specialty hospitals. They completed the Childrens Depression Inventory (ages 12-17 years) or Beck Depression Inventory-II (18 years), and Revised Childrens Manifest Anxiety Scale (12-18 years). Analyses assessed differences between younger and older adolescents and between males and females.nnnRESULTSnThe 236 participants were an average age of 15.58 years (SD 1.98), 58% were male, and 60% Caucasian. Average age at injury was 10.57 years (SD 5.50), and 62% had paraplegia. For depression, 5.5% of adolescents ages 12 to 17 years exceeded the clinical cutoff and 12.7% of 18-year-old adolescents fell into a range of moderate or severe depression. For anxiety, 10.6% of adolescents ages 12 to 18 years exceeded the clinical cutoff. Univariate results revealed that older adolescents were more depressed than younger adolescents, and girls were more anxious than boys. An interaction between sex and age emerged, in that older adolescent girls were significantly more anxious than other youth. Older adolescents were also more likely to be taking medications for emotional, psychological, or behavioral reasons. Reports of suicidal ideation did not differ by adolescent age or sex.nnnCONCLUSIONnFor these adolescents, depression differed with age, and anxiety differed based on age and sex. Implications for intervention include early identification and treatment for struggling adolescents.

Relationships Between Caregiver Characteristics and Health-Related Quality of Life Among Youth with Spinal Cord Injury

Background: Past research has found a relationship between the mental health of parental caregivers and their children with spinal cord injury (SCI), but little is known about how other aspects of caregiver health and functioning impact health-related quality of life (HRQOL) of youth. Objective: The purpose of this study was to explore the importance of caregiver mental health, physical health, burden, and problem-solving skills in relation to childrens physical and psychosocial HRQOL. Methods: Forty youths with SCI ages 7 to 17 years completed the PedsQLTM; primary caregivers completed standardized measures of mental and physical health, burden, and problem solving. We evaluated 2 hierarchical linear regression models predicting childrens physical and psychosocial HRQOL. Results: The 40 youths were an average of 11.48 years (SD = 3.21), 62.5% were male, and 80% Caucasian. They had been injured an average of 6.90 years (SD = 3.92); 75% had paraplegia, and 61.5% had complete injuries. Most caregivers were mothers (85%), were married (60%), and had at least some college education (87.5%). Univariate analyses revealed that caregiver problem solving alone was related to childrens physical HRQOL, and caregiver mental health, burden, and problem solving were related to childrens psychosocial HRQOL. Regression analyses controlling for child age and injury level revealed effective caregiver problem solving (P < .01) was significantly related to greater child physical (Model R2 = 0.440) and psychosocial (Model R2 = 0.547) HRQOL. Conclusions: Although relationships should be explored longitudinally with larger samples, results indicate caregiver problem solving may be a reasonable target for intervention to improve HRQOL among youth with SCI.

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 Childrens Assessment of Participation and Enjoyment, Pediatric Quality of Life Inventory, Revised Childrens Manifest Anxiety Scale, and Childrens 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.