INTRODUCTION AND PURPOSE
The physical outcomes of children and adolescents with chronic spinal cord dysfunction (SCD) have been well documented, but psychosocial outcomes are less well established for children and adolescents with early-onset spinal cord injury (SCI) than for those with spina bifida (SB).1,2 Although children and adolescents with SB frequently have hydrocephalus, which often necessitates placement of a shunt, these 2 groups have many physical similarities, including limb paralysis, neurogenic bowel and bladder, sensory impairments, and musculoskeletal complications such as contractures, hip dysplasia, and scoliosis. However, little is known about whether the psychosocial outcomes of children and adolescents who sustain an SCI very early in life are comparable to children and adolescents who have SB, and if there are differences, what those differences might signify for patient management and family education. Central psychosocial outcomes for children and adolescents include health-related quality of life (HRQOL), participation, and mental health. This study sought to identify patterns and assess differences in psychosocial outcomes between children and adolescents who acquired SCI before the age of 3 years and those with SB.
Some research has been conducted examining psychosocial outcomes of children and adolescents with various physical disabilities including SB and SCI. Using the Pediatric Quality of Life Inventory™ (PedsQL™),3 children and adolescents ages 8 to 20 years with SCD (including both SCI and SB) had significantly lower HRQOL than their peers who were typically developing in all domains (physical, emotional, social, and school).4 Garma et al5 also reported significantly lower PedsQL™ scores in all domains for children and adolescents with SCI than previously published normative data for children and adolescents without disabilities. As to the relationship between the level of impairment and HRQOL, findings are mixed, as some researchers of children and adolescents with SCI have found a relationship5 and other researchers have not.6 Among children and adolescents with SB, parent-reported HRQOL scores for the physical domain were found to correlate with the child's level of lesion, but not with the presence or absence of a shunt.7 Other research has shown a lower level of HRQOL for children with SB than for other children with chronic illness.8
Another important component of positive psychosocial development for children and adolescents is community participation. Research using the Children's Assessment of Participation and Enjoyment (CAPE) scale demonstrates a wide range of participation among children and adolescents with physical disabilities.9 Children and adolescents participate more often in informal activities, and participation is lower among those who have low socioeconomic status, those who are from single-parent homes, and those whose parents have less education.9 Klaas et al10 found that children and adolescents with SCI participated more often in informal and sedentary activities and reported higher enjoyment with these activities than with formal activities. Boudos and Mukherjee11 found that adolescents and young adults with SB have low community participation with multiple barriers to participation including low motivation, lack of information, and time constraints. Greater participation is often seen for children and adolescents with SB who do not have a shunt and for those who are continent, and younger children participate in a greater variety of activities.12
In addition to limited evidence on differences in participation and HRQOL between children and adolescents with early-onset SCI and SB, there are limited data comparing mental health for these populations. A recent study of children and adolescents with SCI reported that 13% had significant anxiety and 6% had significant depression.13 Studies of adults with SCI have shown 25% experience anxiety14 and 27% depression.15 Although this may indicate that children and adolescents have lower rates, this may not actually be the case, as different measurement tools are used across groups. Holmbeck and Devine16 found that children and adolescents with SB are at risk for developing internalizing symptoms, attention issues, educational difficulties, social maladjustment, and delays in development of independent functioning. Buran et al17 found that adolescents and young adults with SB are hopeful and positive, but as a group they were limited in decision making, friendship activities, and household responsibilities. Reports of depression among children and adolescents with SB have also been strongly associated with pain.8
Although the knowledge base of psychosocial functioning for children and adults with SCD is growing, literature comparing children with SCI and children with SB is minimal. Although the physical aspects of SCI and SB may be similar, differences exist between these groups. These differences relate to age at onset, cognitive issues, and the cause of the disability (traumatic vs congenital), all of which may affect one's psychosocial adjustment. Understanding the psychosocial outcomes of children and adolescents with SCD is critical to providing necessary supports and to designing appropriate interventions and providing family education. The purpose of this study was therefore to describe and compare HRQOL, participation, and mental health (anxiety and depression) outcomes between children and adolescents with SCI who were injured at a young age and those with SB. Despite attempting to control for age of disability onset by focusing on youth with SCI injured at a young age, we expected that some differences would be found between the groups, particularly in areas of psychosocial adjustment most related to cognitive functioning, including school-related concerns. However, because of the lack of past research on this topic, this study was primarily seen as exploratory in nature.
This report is a secondary analysis of data collected as part of a multicenter longitudinal study addressing psychosocial outcomes among children and adolescents with SCD and their caregivers. Results from this multicenter study have been published previously, with a sample of these publications cited earlier.5,10,12,13 In brief, children and adolescents recruited for the multicenter study had SCI or SB, were 1 to 18 years old, and were able to complete age-appropriate questionnaires, and the children and adolescents with SCI had been injured for at least 1 year. Children and adolescents with SCI were English- and Spanish-speaking and were being seen at Shriners Hospitals for Children in Chicago, Illinois; Philadelphia, Pennsylvania; and Sacramento, California; and children and adolescents with SB were English-speaking and recruited from Shriners Hospitals for Children in Chicago, Illinois. All interviews took place between March 2007 and December 2010. In the multicenter study 475 children and adolescents with SCI and 89 children and adolescents with SB were approached, with 12% of persons from each diagnostic group declining participation (56 in the SCI group, 11 in the SB group).
This secondary analysis includes a subgroup of English-speaking children and adolescents ages 5 to 18 years with a diagnosis of SCI or SB, with included participants with SCI having been injured before the age of 3 years. In total, there were 83 participants with SCI and 54 participants with SB in the current study. Three years was selected as an age-at-injury cut-off point, because we hypothesized that being injured early in life would make this SCI group more comparable to children and adolescents with SB who were born with lower extremity paralysis. In particular, we hypothesized that these groups would be comparable in terms of effect of and adjustment to the disability as the children and adolescents with SCI were injured very early in life, before they could remember life as a child who was able-bodied. Finally, when denoting SB, we refer to those with myelomeningocele.
This study was reviewed and approved by the local institutional review board for each site (Rush University Medical Center in Chicago, Illinois; Temple University in Philadelphia, Pennsylvania; and University of California at Davis in Sacramento, California). Written informed consent was obtained from the legal guardian and the participants who, depending on age, signed the assent form (ages 7-13 years) or cosigned the informed consent form for research and publication of results (ages 14-17 years).
A study-specific questionnaire was completed by the child's caregiver (typically a parent) who provided demographic information including race, presence of a shunt, number of shunt revisions, primary means of mobility, and special education services received. The child's primary means of mobility was defined as one of the following project-specific choices: walking independently, walking with an assistive device, or using a wheelchair the majority of the time; these general categories were meant to provide a gross summary of mobility.
Injury-related data including date, level (tetraplegia/paraplegia), and extent of injury for those with SCI, and motor level for those with SB, were collected from participants' medical records. Consistent with past SB research, motor level/injury level categories were defined as L2 or higher, L3 to L5, and S1 and below.18 Extent of injury (American Spinal Injury Association Impairment Scale) for SCI participants was determined using the International Standards for the Neurological Classification of Spinal Cord Injury.19
Past research has defined HRQOL as a multidimensional construct representing one's own evaluation of how his or her health affects functioning in physical, emotional, social, and academic areas.3 The quality of life study described in this article was carried out using the PedsQL™, developed by Varni.3 In particular, age-specific psychosocial health subscales from the 4.0 Generic Core Scales were completed by children and adolescents ages 5 to 18 years; these included emotional, social, and school functioning subscales that combine to give a composite overall psychosocial health summary score. A fourth subscale, physical functioning, was not included in this study because of the large amount of missing data that would have resulted due to the lack of relevance for many of the participants who were wheelchair dependent and not able to walk, run, or climb stairs. The PedsQL™ measure was designed for children and adolescents who are typically developing and those with chronic disabilities, and has been demonstrated as reliable and valid.3 Internal consistency reliability was assessed with the current sample for the emotional (0.73), social (0.65), school (0.65), and overall psychosocial scales (0.80). Although the social and school Cronbach α levels fell short of the minimum reliability standard of 0.70, these scores are consistent with past research (they have been reported as low as 0.67 and 0.59), so the scales were retained for the present analyses.3
Community participation was defined as children's involvement in everyday activities outside the typical school day.20,21 To describe and compare participation, children and adolescents ages 6 to 18 years completed the CAPE scale.20,21 This questionnaire has 55 items and was designed to measure children's involvement in recreational and leisure activities in the home and community over the past 4 months. The CAPE measures 5 dimensions of participation for each item: diversity (number of activities), intensity (how often youths participate), with whom children and adolescents participate, where activities are done, and enjoyment of activities. Past research has demonstrated acceptable test–retest reliability, and content and construct validity for the CAPE scale.20,21
In this study, mental health was defined as the absence of experiencing symptoms of anxiety and depression. Two survey tools were used to evaluate mental health of our participants. The first survey, the Revised Children's Manifest Anxiety Scale (RCMAS) was completed by children and adolescents ages 7 to 18 years. The RCMAS is a 37-item tool asking children and adolescents if they have experienced typical anxiety symptoms.22 There are 3 factor-based subscales to help determine the particular nature of the child's anxiety, including physiological anxiety, worry/oversensitivity, and social concerns/concentration; internal consistency reliability was calculated for these subscales and overall anxiety scale in the current sample, resulting in α levels of 0.66, 0.80, 0.67, and 0.79, respectively. The worry/oversensitivity and overall anxiety scale α levels exceeded the minimum reliability standard of 0.70. Although the physiological anxiety and social concerns/concentration α levels fell slightly below this standard, they are consistent with past research, as these reliabilities have been reported in past research as low as 0.67 and 0.64, respectively.13,22,23 These scales were therefore retained in the current analyses.
The second survey used to evaluate mental health, the Children's Depression Inventory (CDI), was completed by children and adolescents ages 7 to 17 years. The CDI is a 27-item self-reported symptom-oriented measure used to assess depression among young people.24 Participants are asked to read 3 statements for each item and pick the statement most true for their feelings over the past 2 weeks. There are 5 self-report factor scales including negative mood, interpersonal problems, ineffectiveness, anhedonia, and negative self-esteem; internal consistency reliability was calculated for these 5 subscales and overall depression scale in the current sample, resulting in α levels of 0.62, 0.52, 0.63, 0.64, 0.58, and 0.81, respectively. Only the overall depression scale α level exceeded the minimum reliability standard of 0.70; however, similar to that reported earlier for the PedsQL™ and RCMAS, these subscale α levels are consistent with past research, as these 5 reliabilities have been reported in past research as low as 0.62, 0.59, 0.63, 0.66, and 0.68, respectively.24 These scales were therefore retained in the current analyses. Although the RCMAS and CDI were developed for children and adolescents without disabilities, the current research team has incorporated both tools in past work with children and adolescents with SCI.13,23
Descriptive statistics were used to identify characteristics of the sample and summarize psychosocial outcomes for each group. Group comparisons were then conducted using parametric or nonparametric statistics. Specifically, a series of independent-samples parametric t tests were conducted to compare children and adolescents with SCI and SB on the normally distributed variables of participation diversity and enjoyment; and school and overall psychosocial HRQOL. A series of nonparametric Mann-Whitney tests were conducted to compare children and adolescents with SCI and SB on the nonnormally distributed variables of participation intensity, with, and where; emotional and social HRQOL; and total and subscale scores for anxiety and depression.25 To investigate subgroup differences, comparisons were also conducted between participants with SB and SCI who had paraplegia, and between participants with SB and SCI who had tetraplegia. We hypothesized that children and adolescents with SB would be most similar to children and adolescents with paraplegic SCI and most dissimilar from children and adolescents with tetraplegic SCI. The Statistical Package for the Social Sciences version 20.0 (SPSS) was used for all analyses. As noted previously, participants completed slightly different measures depending on their ages. As a result sample sizes fluctuate; for example, although 83 children and adolescents with SCI participated, the maximum number of participants with SCI completing any one measure was 80 for the PedsQL™. As a result, sample sizes are provided in the text and tables to aid in the interpretation of results.
Data from 83 children and adolescents with SCI (49 males, 34 females; mean age = 10 yrs 7 mos; SD = 6 yrs 10 mos) who were injured before their third birthday and 54 children and adolescents with SB (27 males, 27 females; mean age = 11 yrs 8 mos; SD = 4 yrs 1 mo) were included in this study. The participants with SCI had tetraplegia (n = 31; 37%) or paraplegia (n = 52; 63%) and had been injured for a mean of 10 years (SD = 3 yrs 10 mos) at the time of their study participation. The participants with SB all had paraplegia, with 64.8% at the L3 to L5 motor level. Eighty-seven percent of participants with SB had a shunt, with 68% reporting they have had 1 or more shunt revisions (range = 1-16 revisions; median = 2 revisions). No significant differences were found between participants with SCI and SB in terms of current age, sex, race, primary means of mobility, or number receiving special education services. However, a significant difference was found in terms of why they received special education services, in that those with SB had higher levels of learning delays and disabilities as well as multiple reasons for special education services, in contrast to the SCI group, for whom most in special education were receiving services due to physical or other health-related reasons. Demographic characteristics are summarized in Table 1.
Overall, participants with SCI (tetraplegia and paraplegia combined) had higher school HRQOL (P = .016), less anxiety regarding social concerns/concentration (P = .037). No other significant group differences were found, although trends were noted toward participating in more activities (P = .098) and toward lower total anxiety scores (P = .055) than participants with SB (Table 2).
To better approximate the physical limitations experienced by children and adolescents with SB, we then compared these participants (n = 54) with the subgroup of participants with SCI who had paraplegia (n = 52). The SCI group with paraplegia demonstrated higher school (P = .014) and overall psychosocial HRQOL (P = .034), and participated in a greater variety of activities (P = .015). Participants with SCI and paraplegia trended toward experiencing fewer total symptoms of anxiety (P = .076), and less anxiety regarding social concerns/concentration (P = .056). The SCI group with paraplegia also trended toward less total symptoms of depression (P = .065), and fewer feelings of ineffectiveness (P = .093) than the SB group (Table 2).
As a point of contrast, we also compared participants with SB with those with SCI who had tetraplegia (n = 31). These groups experience different physical limitations given that participants with tetraplegia have upper extremity involvement; however, there were no significant differences between the 2 groups on any measures (Table 2).
The purpose of this study was to describe and compare psychosocial outcomes in the areas of HRQOL, participation, and mental health for children and adolescents with SCI who were injured before age 3 years and children and adolescents with SB. Although children and adolescents with SCI and SB have many physical similarities, as expected our study found significant differences in certain psychosocial outcomes between these groups. Overall, both groups had similar levels of emotional and social HRQOL as well as similar outcomes for intensity, with whom, where, and the level of enjoyment for social participation. However, children and adolescents with SB reported lower levels of school HRQOL and higher levels of anxiety regarding social concerns/concentration. Compared with those with paraplegic SCI, children and adolescents with SB reported lower school and overall psychosocial HRQOL, participated in fewer activities, and trended toward greater issues with mental health than the participants in the SCI group. The subgroup of participants with SCI with paraplegia had the greatest number and variety of differences in comparison to the participants with SB. Remarkably, in terms of psychosocial outcomes, the SB group looked more similar to the SCI subgroup with tetraplegia. Although the subgroup of participants with SCI and tetraplegia was relatively smaller than the other groups, this finding needs further investigation.
Although similar in many outward characteristics, there are physical and cognitive differences between the SCI and SB groups that may account for some of the HRQOL discrepancies. A central difference between children and adolescents with SCI and SB may be the high frequency of hydrocephalus, presence of a shunt, and number of shunt revisions in those with SB. In this study, 87% of the participants with SB had a shunt with 71% having undergone at least 1 shunt revision. For children and adolescents with SB, it has been shown that the presence of a shunt may result in cognitive deficits26,27 and impaired executive functioning and memory,28 which may account for the poorer school HRQOL for children and adolescents with SB. Holmbeck and Devine16,29 noted a risk for learning difficulties, executive functioning deficits, decreased social functioning, and reduced attention and concentration for children with SB. Echoing these findings, compared with those with SCI in our study, the SB group demonstrated significantly higher levels of anxiety related to social concerns and concentration. These higher subscale scores reinforce that children and adolescents with SB may have anxiety that inhibits their ability to concentrate on assigned tasks and school work and may feel that they are not as capable or good as others. Such issues may further contribute to the reduced school HRQOL and increased anxiety levels for children and adolescents with SB compared with those with SCI.
Although Law et al9 have shown that there is a broad range of participation for youth with physical disabilities, the literature does not give benchmarks as to the level of participation needed to achieve a positive life outcome. The children and adolescents with SCI (tetraplegia and paraplegia groups combined) and SB in this study had similar levels of participation. However, participants with SB participated in fewer activities than those with paraplegic SCI, possibly because of their cognitive and social issues. The literature has addressed obstacles to community participation for children and adolescents with SCI and SB, but lack of information, time, and financial and environmental constraints are difficult to overcome and require ongoing intervention by all staff who interact with the family.11
Although outcomes for anxiety and depression did not reveal significant findings except in the area of social concerns and concentration, trends demonstrated that children and adolescents with SB experienced greater mental health issues in the areas of anxiety and depression than children and adolescents with SCI, particularly those with paraplegia. The children and adolescents with SB trended toward a higher level of ineffectiveness on the depression scale, which reflects a negative view of their own ability and academic performance.24 Although Anderson et al13 did not examine children and adolescents with SB, their study did find that children and adolescents with SCI ages 7 to 17 years who were injured for at least 1 year had similar levels of anxiety and depression as children and adolescents who were typically developing. One might expect that being injured at such a young age, the children and adolescents with SCI would have comparable mental health scores to those with SB; however, perhaps the cognitive challenges experienced by many children and adolescents with SB lead to greater mental health issues. Future research should address how best to support youth with SB who may be struggling with symptoms of anxiety or depression.
As a clinical team, we recommend increasing attention to school issues, especially for children and adolescents with SB, and attempting to intervene on behalf of the child and family to help assure positive school outcomes and social interactions. Clinicians need to carefully address any mental health issues for children and adolescents with SCD and be cognizant that anxiety and depression can be prevalent and necessitate a referral to mental health professionals. One should not assume that because a child is born with SCD that the child would accept his or her disability easier than if he or she had an injury later in life. We also need to ensure that children and adolescents with SCD, especially those with SB, have access to a wide variety of community opportunities for participation in areas that interest them. Families need to be better informed about what recreational activities are available in their area and the importance of community participation in enhancing well-being and social skills. A healthy self-concept can lead toward greater community and social involvement as an adult.
Limitations of this study consist of only including English-speaking children and adolescents and not having a large enough sample of children and adolescents with SCI who acquired their injury at birth to compare with those with SB. Furthermore, the groups differed in terms of their injury/motor levels: the majority of those with SCI and paraplegia had an injury level of L2 and higher (62.3%), whereas the majority of those with SB had a motor level of L3 to L5 (64.8%). The numbers of participants in each group were not large enough to perform comparisons on the basis of the motor level/injury level. In addition, the sample of SB participants without shunts was not large enough to compare their psychosocial outcomes to those with shunts. Related to this limitation, we did not collect neuropsychological data on our participants, but it will be important to examine this in the future, especially for the SB population. It would also be important to look at the effect of socioeconomic status on psychosocial outcomes of children and adolescents with SCD. Finally, future work should examine longitudinal data to determine whether specific ages/transitions are of concern for both the SCI and SB population; this would assist in more effectively focusing interventions and developing trajectories of psychosocial health.
Children and adolescents with SCD demonstrate respectable levels of emotional and social HRQOL, demonstrate strong enjoyment from the activities they participate in, and have low mean levels of mental health problems. Children and adolescents with SB report higher levels of anxiety with social concerns and concentration than the whole group of children and adolescents with SCI. This study also shows that children and adolescents with SCI and paraplegia who were injured before the age of 3 years participate in more diverse activities and have greater school and overall HRQOL, and trend toward fewer mental health problems than those with SB. Children and adolescents with SCI and tetraplegia report similar outcomes as those with SB. Children and adolescents with SB would especially benefit from greater support in school, efforts aimed at reducing barriers to community and social participation, and more consistent mental health assessment and intervention.
The authors thank Dr Heather Russell, Dr Sylvia Garma, Erica Daharsh, and the research coordinators who assisted with this work, as well as the children, adolescents, and caregivers who graciously participated in this research.
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