Pediatric-onset Spinal Cord Injury Research Articles

Handrim kinetics and quantitative ultrasound parameters for assessment of subacromial impingement in wheelchair users with pediatric-onset spinal cord injury

BackgroundMost manual wheelchair users with pediatric-onset spinal cord injury (SCI) will experience shoulder pain or pathology at some point in their life. However, guidelines for preservation of the upper limb in children with SCI are limited. Research questionWhat are the relationships between manual wheelchair handrim kinetics and quantitative ultrasound parameters related to subacromial impingement in individuals with pediatric-onset SCI? MethodsSubacromial impingement risk factors including supraspinatus tendon thickness (SST), acromiohumeral distance (AHD), and occupation ratio (OR; SST/AHD) were measured with ultrasound in 11 manual wheelchair users with pediatric-onset SCI. Handrim kinetics were acquired during the stroke cycle, including peak resultant force (FR), peak rate of rise of resultant force (ROR) and fractional effective force (FEF). Variability of handrim kinetics was computed using the coefficient of variation and linear regression was performed to assess correlations between handrim metrics and quantitative ultrasound parameters. ResultsPeak resultant force significantly increased 1.4 % and variability of FEF significantly decreased 8.0 % for every 0.1 cm increase in AHD. FEF decreased 3.5 % for every 0.1 cm increase in SST. Variability of peak resultant force significantly increased 3.6 % and variability of peak ROR of resultant force significantly increased 7.3 % for every 0.1 cm increase in SST. FEF variability significantly decreased 11.6 % for every 0.1 cm increase in SST. Peak ROR significantly decreased 1.54 % with every 10 % increase in OR. FEF variability significantly decreased 1.5 % with every 10 % increase in OR. SignificanceThis is the first study to investigate relationships among handrim kinetics and shoulder structure in manual wheelchair users with pediatric-onset SCI. Associations were identified between subacromial impingement risk factors and magnitude and variability of wheelchair handrim kinetics. These results indicate the critical need to further explore the relationships among wheelchair handrim kinetics, shoulder joint dynamics, and shoulder pathology in manual wheelchair users with pediatric-onset SCI.

Sexual Activity in Adults with Pediatric-Onset Spinal Cord Injury: Injury, Demographic, and Lifestyle Factors.

Sexual development is a complex process of understanding oneself as a sexual being. Youth with spinal cord injury (SCI) navigate the typical phases of sexual development along with the physical and psychological sequelae of an SCI. As youth with SCI progress from adolescence to emerging adulthood, sexual activity-physical intimacy and sexual intercourse-is an important milestone. The aims of the study were to (1) describe frequency of physical intimacy among adults with pediatric-onset SCI and (2) identify injury, demographic, and lifestyle factors that predict frequency of physical intimacy. Adults with pediatric-onset SCI who were former patients within a North American pediatric hospital system (N = 277) completed a structured telephone interview that included medical and sociodemographic information and standardized measures of psychological functioning. Participants rated physical intimacy and sexual intercourse frequency on a 5-point Likert scale, with a response of monthly, weekly, or daily classified as regular frequency and never or yearly as irregular frequency. Bivariate and multivariate analyses were conducted with physical intimacy frequency as the primary outcome. Of the participants, 55% engaged in physical intimacy and 49% engaged in sexual intercourse with regular frequency. In logistic regression analyses, living independently of parents, being married, and higher perceived social integration increased likelihood of regular frequency of physical intimacy. Injury severity and secondary medical complications were not significant independent predictors of frequency of physical intimacy. Half of adults with pediatric-onset SCI engage in regular physical intimacy; this is below the estimates for the general population. Psychosocial factors are stronger contributors to physical intimacy frequency than SCI-related factors. Health care providers and researchers should focus on barriers to social integration and development of social relationships as factors that influence physical intimacy in this population.

Research Priorities of the Pediatric Spinal Cord Injury Population: An International Insight for Rehabilitation Care

BackgroundAlthough feedback from people with adult-onset spinal cord injury (SCI) has been considered for new rehabilitation programs, little is known about the priorities of the pediatric-onset SCI population. This study describes and compares health and life (H&L) domain research priorities of youth with pediatric-onset SCI and their parents/caregivers. MethodsA cross-sectional survey, designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) Collaboration, was performed at six European countries. Dyad data from 202 participants, youth with pediatric-onset SCI (n = 101) and their parents/caregivers (n = 101), were analyzed with the PEPSCI H&L domain surveys. ResultsThe cohort was composed of 8 to 12-year-olds (30.7%), 13 to 17-year-olds (38.6%), and 18 to 25-year-olds (30.7%). The top three H&L domain research priorities reported by parents/caregivers of 8 to 12-year-olds were “walking/ability to move” (91%), “bladder” function (90%), and “general health/feel” (89%), compared with “physical function” (93%), “general health/feel” (90%), and “walking/ability to move” (89%) rated by parents/caregivers of 13 to 25-year-olds. “Bowel” function (85%), “leg/foot movement” (84%), and “bladder” function (84%) were reported as priorities by 13 to 25-year-olds, whereas “physical function” (84%), “experience at school” (83%), and “general mood” were highlighted by 8 to 12-year-olds. The top 10 priorities preferred by 13 to 25-year-olds when compared with the top 10 priorities reported by their parents/caregivers, included problems related to “bowel” and “pain.” ConclusionsHealth domain research priorities were highlighted by 13 to 25-year-olds, compared with their parents/caregivers who equally identified H&L domains. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive research strategy for the pediatric SCI population.

Feasibility and Acceptability of a Codesigned Health Care Transition Intervention for Young People With Spinal Cord Injuries.

Due in part to medical complications, adults with a pediatric onset spinal cord injury (SCI) are at higher risk of experiencing dissatisfaction with life and lower perceived physical health when compared to their peers with no disability. To support the prevention of medical complications, young people with SCI must successfully transition to adult health care. Health care transition (HCT) interventions can support young people with chronic conditions in their move to adult health care. To evaluate the feasibility and acceptability of a web-based HCT intervention codesigned with young people with SCI and parents/caregivers. Semi-structured individual interviews were conducted online with young people with SCI and parents/caregivers who transitioned or were preparing for the transition from pediatric to adult health care. Interviews were also conducted with health care professionals. The interviews were analyzed using a hybrid deductive and inductive qualitative content analysis process. Feasibility and acceptability were measured using Bowen and colleagues' framework, which includes eight focus areas: acceptability, demand, implementation, practicality, adaption, integration, expansion, and limited efficacy. Overall, participants responded positively to the intervention and believed that it would be useful to young people with SCI and parents/caregivers. Two areas of Bowen et al.'s framework, implementation and integration, require further consideration in terms of how to embed the intervention into the current transition process. This study found the HCT intervention to be an innovative approach to support young people with SCI and their parent/caregivers that demonstrates promise in the areas of feasibility and acceptability.

Rural-urban disparities in healthcare factors and long-term health outcomes in individuals with pediatric-onset spinal cord injury.

Adults with pediatric-onset spinal cord injury (SCI) require long-term care and demonstrate elevated risk of secondary health conditions and psychosocial challenges. Medical providers are typically found in more populous and wealthy areas, resulting in a relative lack of providers in rural areas, a discrepancy even more pronounced among specialty providers. As a result, those who reside in rural regions potentially have unmet medical needs, representing a significant public health concern. The purpose of this study was to assess differences between rural and urban-residing participants with pediatric-onset SCI in factors affecting healthcare usage (e.g., employment, income, access to private insurance, community integration) and long-term healthcare outcomes (i.e., secondary health conditions and psychosocial functioning). Data were gathered from an ongoing study examining long-term outcomes of adults with pediatric-onset SCI. Participants (N = 490) completed measures of sociodemographics, injury characteristics, and medical outcomes. Participant zip codes were classified as rural or urban using the ProximityOne database based on the ZIP Code Tabulation Areas from the 2020 census. Individuals residing in rural regions report lower levels of education, income, employment rates, private health insurance, and community integration (mobility, occupation, and social engagement), as well increased incidence of pressure injuries, urinary tract infections, hospitalizations, bowel incontinence, sleep difficulties, and perceived physical health. No differences in incidence of psychosocial functioning were identified. Mitigating identified disparities and obstacles to treatment of SCI due to residing in rural environments would result in important improvements in treatment outcomes and future prevention efforts of secondary health complications, improving the overall health of adults with pediatric-onset SCI.

The Influence of Age at Pediatric-Onset Spinal Cord Injury and Years of Wheelchair Use on Shoulder Complex Joint Dynamics During Manual Wheelchair Propulsion.

To assess the association of age at pediatric-onset spinal cord injury (SCI) and years of manual wheelchair use with shoulder dynamics. Upper extremity kinematics and hand-rim kinetics were obtained during manual wheelchair propulsion. An inverse dynamics model computed three-dimensional acromioclavicular, sternoclavicular, and glenohumeral joint dynamics. Linear mixed effects models evaluated the association of age at injury onset and years of wheelchair use with shoulder dynamics. Motion laboratory within a children's hospital. Seventeen manual wheelchair users (N=17; 6 female, 11 male; mean age: 17.2 years, mean age at SCI onset: 11.5 years) with pediatric-onset SCI (levels: C4-T11) and International Standards for Neurological Classification of SCI grades: A (11), B (3), C (2), and N/A (2). Not applicable. Acromioclavicular, sternoclavicular, and glenohumeral angles and ranges of motion, and glenohumeral forces and moments. We observed a decrease in maximum acromioclavicular upward rotation (ß [95% confidence interval {CI}]=3.02 [0.15,5.89], P=.039) and an increase in acromioclavicular downward/upward rotation range of motion (ß [95% CI]=0.44 [0.08,0.80], P=.016) with increasing age at SCI onset. We found interactions between age at onset and years of use for maximum glenohumeral abduction (ß [95% CI]=0.16 [0.03,0.29], P=.017), acromioclavicular downward/upward rotation range of motion (ß [95% CI]=-0.05 [-0.09,-0.01], P=.008), minimum acromioclavicular upward rotation (ß [95% CI]=-0.34 [-0.64,-0.04], P=.026). A decrease in glenohumeral internal rotation moment (ß [95% CI]=-0.09 [-0.17,-0.009], P=.029) with increasing years of use was found. Age at injury and the years of wheelchair use are associated with shoulder complex biomechanics during wheelchair propulsion. These results are noteworthy, as both age at SCI onset and years of wheelchair use are considered important factors in the incidence of shoulder pain. These results suggest that investigations of biomechanical changes over the lifespan are critical.

Pediatric health and life domain priorities: A national survey of people with spinal cord injury and their parents and caregivers

Context/Objective No information is available regarding priorities for pediatric-onset spinal cord injury (SCI). This study described the Health and Life (H&L) domain priorities of youth with pediatric-onset SCI and their parents/caregivers living in Spain. Design A cross-sectional survey. Setting Two SCI rehabilitation centers. Participants Sixty participants, youth with pediatric-onset SCI (n = 26) and parents/caregivers (n = 34). Interventions Not applicable. Outcome Measures Median overall priorities calculated on the basis of importance, unhappiness, and research measured with a new survey of pediatric H&L domains and rated using a 5-point Likert Scale. Results A total of 60 surveys were received providing information on 35 individuals with SCI: 2-7-year-olds (25.7%), 8-12-year-olds (22.9%), 13-17-year-olds (31.4%), and 18-25-year-olds (20.0%). The top three overall H&L priorities reported by parents/caregivers of 2-12-year-olds were “parenthood expectations” (84%), “leg/foot movement” (83%), and “bladder” function (83%), compared to “dressing/undressing” (78%), “walking/ability to move” (77%) and “bladder” function (77%) rated for 13-25-year-olds. “Sit-to-stand” (79%), “leg/foot movement” (78%) and “arm/hand movement” (77%) were reported as priorities by 13-25-year-olds. The 13-25-year-olds highlighted “sit-to-stand” (100%), “eating/drinking” (54%), and “physical function” (94%) as their top unhappiness, importance, and research priorities, respectively. Significant differences between tetraplegia and paraplegia were found in “mobility in the community” (unhappiness item) for 13-25-years-old. Conclusion Health domains were considered the top overall H&L priorities by parents/caregivers of 13-25-year-olds, compared to life domains reported for their 2-12-year-olds. This survey will aid rehabilitation professionals to engage stakeholders to implement a comprehensive SCI management program for the pediatric population.

Health and LifeDomain ResearchPriorities in Children, Adolescents and Young Adults With Pediatric-Onset Spinal Cord Injury: A National Cross-Sectional Survey in England.

Although feedback from people with adult-onset spinal cord injury (SCI) has been considered in developing research programs, little is known about pediatric-onset SCI priorities. To describe the health and life (H&L) domain research priorities of youth with pediatric-onset SCI living in England. Youth with pediatric-onset SCI (≥6 months) were recruited from five English rehabilitation centers and invited with their parents/caregivers to complete the age-appropriate surveys designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) collaboration. A total of 73 surveys were received (32 from participants with SCI and 41 from their parents/caregivers), providing information on 47 individuals with SCI: 2- to 7-year-olds (29.8%), 8- to 12-year-olds (19.2%), 13- to 17-year-olds (17.0%), and 18 to 25-year-olds (34.0%). The top three research priorities reported by parents/caregivers of 2- to 12-year-old and 13- to 25-year-olds were pain (81%/89%), physical function (91%/83%) and health care access (78%/78%). Eighty-nine percent of 8- to 12-year-olds emphasized schooling, peer relationships, and general mood as their research priorities. The top three research priorities for Health or Life domains reported by 13- to 25-year-olds included spasms (95%), pain (91%), pressure injuries (91%), health care access (83%), physical function (78%), and daily personal needs (74%). Although there should be an emphasis on addressing important life domain issues for 8- to 12-year-olds with SCI, adolescents and young adults mostly prioritized health domain research priorities in addition to health care access. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive SCI research strategy in England for the pediatric population.

Muscle Activation Patterns During Movement Attempts in Children With Acquired Spinal Cord Injury: Neurophysiological Assessment of Residual Motor Function Below the Level of Lesion.

Introduction: Characterization of residual neuromotor capacity after spinal cord injury (SCI) is challenging. The current gold standard for measurement of sensorimotor function after SCI, the International Society for Neurological Classification of Spinal Cord Injury (ISNCSCI) exam, seeks to determine isolated intentional muscle activation, however many individuals with SCI exhibit intentional movements and muscle activation patterns which are not confined to specific joint or muscle. Further, isolated muscle activation is a feature of the neuromuscular system that emerges during development, and thus may not be an appropriate measurement standard for children younger than 6.Methods: We utilized neurophysiological assessment methodology, long studied in adult SCI populations, to evaluate residual neuromotor capacity in 24 children with SCI, as well as 19 typically developing (TD) children. Surface electromyography (EMG) signals were recorded from 11 muscles bilaterally, representing spinal motor output from all regions (i.e., cervical, thoracic, and lumbosacral), during standardized movement attempts. EMG records were subjectively analyzed based on spatiotemporal muscle activation characteristics, while the voluntary response index (VRI) was utilized for objective analysis of unilateral leg movement tasks.Results: Evidence of intentional leg muscle activation below the level of lesion was found in 11/24 children with SCI, and was classified based on activation pattern. Trace activation, bilateral (generalized) activation, and unilateral or isolated activation occurred in 32, 49, and 8% of movement tasks, respectively. Similarly, VRI analyses objectively identified significant differences between TD and SCI children in both magnitude (p < 0.01) and similarity index (p < 0.05) for all unilateral leg movement tasks. Activation of the erector spinae muscles, recorded at the T10–T12 vertebral level, was observed in all children with SCI, regardless of injury level or severity.Conclusions: Residual descending influence on spinal motor circuits may be present after SCI in children. Assessment of multi-muscle activation patterns during intentional movement attempts can provide objective evidence of the presence and extent of such residual muscle activation, and may provide an indicator of motor recovery potential following injury. The presence of residual intentional muscle activation has important implications for rehabilitation following pediatric-onset SCI.

Use of Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf) in individuals with pediatric-onset spinal cord injury.

To investigate the psychometric properties and utility of the Appraisals of DisAbility Primary and Secondary Scale-Short Form (ADAPSS-sf), a measure of cognitive appraisals, among adults with pediatric-onset SCI. To examine the relation of the ADAPSS-sf to demographics, injury characteristics, and secondary health and psychosocial outcomes. A structured telephone interview was conducted to obtain measures of ADAPSS-sf, pain, sleep, secondary health complications, and psychosocial functioning. Community in United States and Canada. Individuals who sustained an SCI at 18 years of age or younger (N = 115) were initially interviewed at age 19 years or older and followed annually. Study findings support sound psychometrics of the ADAPSS-sf. The measure demonstrated strong test-retest reliability and internal consistency. There were no differences on ADAPSS-sf scores in relation to current age, gender, race, etiology, injury severity, or injury level. Individuals who sustained SCI at an older age were more likely to endorse negative appraisals of their injury. Results suggest that higher negative SCI-related appraisals were related to higher mental health difficulties. Negative SCI-related appraisals were associated with sleep difficulties, pressure injuries, pain, distress from pain, and poor overall subjective ratings of health. This study confirms the use of the ADAPSS-sf in a pediatric-onset SCI adult population by demonstrating its good internal validity, test-retest reliability, convergent and face validity, and brevity. Moreover, the current study revealed that such appraisals are associated with both psychosocial and secondary health outcomes, further supporting the ADAPSS-sf as a valuable tool for clinicians and researchers.

Activity-Based Therapy Targeting Neuromuscular Capacity After Pediatric-Onset Spinal Cord Injury.

Background: Activity-based therapies aim to improve neuromuscular capacity after spinal cord injury (SCI). Objective: The purpose of this prospective study was to report the impact of Activity-based Locomotor Training (AB-LT) on neuromuscular capacity in pediatric patients with SCI. Methods: Participants were enrolled for their first episode of AB-LT for a minimum of 60 daily, 1.5-hour sessions. The Segmental Assessment of Trunk Control (SATCo) and the Pediatric Neuromuscular Recovery Scale (Pediatric NRS) were assessed initially, every 20 sessions, and post 60 sessions. Results: Twenty-six consecutive patients, mean age 5 years (SD = 3), completed a mean 55 sessions (SD = 4) within 63 weekdays (SD = 9). The Pediatric NRS total score improved significantly, adjusted mean 11.4, from initial to post-60 sessions (p < .05) with an average adjusted evaluation-to-evaluation 3.7 change. SATCo scores improved significantly across 60 sessions, mean change 5.2, an estimated 1.7 change between evaluations (p < .05). Age at enrollment and chronicity had no effect; however, initial neuromuscular capacity scores were negatively correlated with change scores (p < .05). Conclusion: Sixty AB-LT sessions significantly improved trunk and neuromuscular capacity in children with SCI, regardless of age or chronicity at enrollment. Patients with lower initial scores made greater improvements than patients with higher initial neuromuscular capacity. Anecdotal parent reports of their child's functional change in the home and community highlight the synergy between quantitative change in neuromuscular capacity and meaningful, improved quality of life and the need for formal investigation of this relationship.

Psychosocial and Health Outcomes of Adults With Violently Acquired Pediatric Spinal Cord Injury.

Objective: To describe the psychosocial and medical outcomes of individuals with pediatric-onset spinal cord injury (SCI) as a result of violent injuries. Methods: This was a cross-sectional study assessing adult outcomes associated with pediatric-onset SCI. Participants completed measures assessing demographics, injury characteristics, secondary conditions, and psychosocial functioning. Results: Participants included 483 adults (ages 19-51 years; M = 32.89, SD = 6.81) who sustained an SCI prior to age 19 (0-18 years; M = 14.25, SD = 4.40). Participants tended to have complete injuries (68%) and tetraplegia (53%) and were predominantly male (63%) and Caucasian (85%). The violent (n = 42) and nonviolent (n = 441) etiology groups tended to be similar in terms of gender. The violent etiology (VE) group, however, was significantly more likely to have paraplegia (χ2 = 7.45, p = .01), identify as an ethnic minority (χ2 = 5.40, p = .02), and have decreased odds of completing a college degree (odds ratio [OR], 0.40; 95% CI, 0.19-0.83). After controlling for significant covariates, individuals in the VE group were more likely to have moderate depression symptoms (OR, 3.73; 95% CI, 1.35-10.30) and significantly lower odds of economic independence (OR, 0.39; 95% CI, 0.19-0.84). The VE group was also 2 times as likely as the nonviolent group to report a pressure injury (OR, 2.04; 95% CI, 1.05-3.94) or activity interfering pain (OR, 2.34; 95% CI, 1.15-4.74). Conclusion: The results of this study reveal significantly greater psychosocial health concerns and more medical complications for individuals with violent SCI than those with nonviolent SCI. Children with an SCI from a violent etiology may warrant additional attention and services aimed at promoting stability and long-term resilience.

Income-to-needs Ratio on Long-Term Outcomes in Adults with Pediatric-Onset Spinal Cord Injury

Income-to-needs Ratio on Long-Term Outcomes in Adults with Pediatric-Onset Spinal Cord Injury

Poor sleep in adults with pediatric-onset spinal cord injury: associations with pain, health, and activity

Objective: To investigate medical complications that increase risk for poor sleep in adults with pediatric-onset spinal cord injury (SCI) and explore the relation of poor sleep to psychosocial outcomes.Method: This was a cross-sectional study of individuals with pediatric-onset SCI interviewed between 2011–2015. Participants were recruited from a pediatric specialty hospital and answered questions about demographics, injury characteristics, pain, and medical complications and completed standardized outcome measures, including: Pittsburgh Sleep Quality Index, SF12v2 Health Survey, Craig Handicap Assessment and Recording Technique (CHART), and Subjective Happiness Scale.Results: The study included 180 participants between the ages of 19 and 51 (M=34.20 y; SD=7.28) who sustained their SCI before the age of 19 (M=13.48y; SD=4.59). Participants were predominantly male (62%) and Caucasian (84%). A majority had tetraplegia (56%) and complete injuries (74%). Poor sleep occurred with greater frequency in those with tetraplegia and who were unemployed. Neck (OR=2.80, P = 0.001), shoulder (OR=2.15, P = 0.011), arm (OR=3.06, P = 0.004), and lower extremity pain (OR=2.72, P = 0.004) were associated with increased risk of poor sleep. In a logistic regression analysis, chronic medical conditions and continuous pain were most likely to be associated with poor sleep. Individuals with poor sleep reported lower levels of mobility, perceived health, and subjective happiness.Conclusion: Pain and secondary complications significantly increase the odds of poor sleep. Furthermore, poor sleep is associated with decreased mobility and measures of well-being. Preventive measures to reduce risk factors and improve sleep quality after pediatric-onset SCI should be considered.

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.

Medical and psychological factors related to pain in adults with pediatric-onset spinal cord injury: a biopsychosocial model.

A cross-sectional study. The aim of this study is to determine medical and psychological correlates of pain in individuals with pediatric-onset spinal cord injury (SCI). Shriners Hospitals for Children-Chicago, Philadelphia and Northern California (USA). A total of 187 adults who had sustained an injury before 19 years of age completed interviews that included medical information, standardized measures of psychological functioning (Beck Anxiety Inventory and Patient Health Questionnaire) and a comprehensive pain questionnaire to assess the location, frequency, intensity and duration of pain and distress and disability related to pain. The findings identified the medical and psychological correlates of pain. Greater symptoms of depression and anxiety were strong and consistent predictors of several aspects of pain, above and beyond the impact of gender, injury-related characteristics and secondary medical complications. The findings support a biopsychosocial model of the development and persistence of pain in individuals with pediatric-onset SCI. Interdisciplinary rehabilitation may incorporate psychological treatment such as cognitive-behavioral therapy to reduce the pain and improve functioning. The assessment and treatment of pain in pediatric-onset SCI is a clinical and research priority. This study is supported by funding from Shriners Hospitals for Children and the Craig H. Neilsen Foundation, grant #324671.

Long-Term Outcomes and Longitudinal Changes of Neurogenic Bowel Management in Adults With Pediatric-Onset Spinal Cord Injury

ObjectivesTo describe long-term outcomes of neurogenic bowel dysfunction (NBD), determine changes over time in the type of bowel program, and determine changes in psychosocial outcomes associated with NBD-related factors in adults with pediatric-onset spinal cord injury (SCI). DesignLongitudinal cohort survey. Follow-up occurred annually for a total of 466 interviews, with most participants (75%) contributing to at least 3 consecutive interviews. SettingCommunity. ParticipantsAdults (N=131) who had sustained an SCI before the age of 19 years (men, 64.1%; tetraplegia, 58.8%; mean age ± SD, 33.4±6.1y; mean time since injury ± SD, 19.5±7.0y). InterventionsNot applicable. Main Outcome MeasuresType and evacuation time of bowel management programs; standardized measures assessing life satisfaction, health perception, depressive symptoms, and participation. Generalized estimating equations were formulated to determine odds of change in outcomes over time. ResultsAt first interview, rectal suppository/enema use was most common (51%). Over time, the likelihood of using manual evacuation (odds ratio [OR]=1.077; 95% confidence interval [CI], 1.023–1.134; P=.005), oral laxatives (OR=1.052; 95% CI, 1.001–1.107; P=.047), and colostomy (OR=1.071; 95% CI, 1.001–1.147; P=.047) increased, whereas the odds of rectal suppository use decreased (OR=.933; 95% CI, .896–.973; P=.001). Bowel evacuation times were likely to decrease over time in participants using manual evacuation (OR=.499; 95% CI, .256–.974; P=.042) and digital rectal stimulation (OR=.490; 95% CI, .274–.881; P=.017), but increase for rectal suppository/enema use (OR=1.871; 95% CI, 1.264–2.771; P=.002). When the level of injury was controlled for, participants using manual evacuation and digital rectal stimulation were more likely to have increases in community participation scores (P<.05). ConclusionsChanges in type of bowel program over time may be associated with the time required to complete bowel evacuation in this relatively young adult SCI population.

Sleep, well-being, and psychological symptoms in adults with pediatric-onset spinal cord injury.

To examine the prevalence of poor sleep quality in adults with pediatric-onset spinal cord injury (SCI) and to assess the clinical correlates. 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%). 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). 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.

Medication profile and polypharmacy in adults with pediatric-onset spinal cord injury.

Cross-sectional survey. To describe the medications taken by individuals who had sustained a spinal cord injury (SCI) in childhood or adolescence (age <19 years) and to report the prevalence of polypharmacy and its association with demographic, injury-related and psychosocial factors. Community. Structured interviews of adults with pediatric-onset SCI. Routine medications and secondary health conditions (SHCs) experienced were recorded. Polypharmacy was defined as the concomitant use of five or more different types of medications. Bivariate analyses and multiple regression models were conducted to determine associations between polypharmacy and demographic factors, injury-related factors, number of SHCs and psychosocial outcomes (FIM, SF-12v2 Health Survey, CHART, PHQ-9). A total of 159 participants (male, 63%; tetraplegia, 59%) with mean age 35.0±6.2 years (range, 26.7-50.9 years) were included. Most common routine medications were muscle relaxants (50.3%), bladder medications (48.5%), bowel agents (41.5%), analgesics (26.4%) and antidepressants (16.9%). Polypharmacy was present in 30.8% (n, 49) and was more prevalent in those with tetraplegia (40.2% vs 17.9%; P=0.003). Participants with polypharmacy were older, had lower FIM, CHART and SF-12v2 scores, and higher PHQ-9 scores. Regression models indicate the total number of SHCs, time since injury and tetraplegia to be significant positive predictors of polypharmacy. Duration of SCI and SHCs are risk factors for polypharmacy in this population of adults with SCI. Measures should be taken to prevent the occurrence of SHCs throughout adulthood so as to prevent the potentially adverse physiological effects and psychosocial outcomes associated with polypharmacy.

Predictive factors of hospitalization in adults with pediatric-onset SCI: a longitudinal analysis.

Longitudinal survey. To investigate the prevalence and rate of hospitalization among adults with pediatric-onset spinal cord injury (SCI) and explore medical and behavioral factors associated with hospitalization. This study included 368 adults who sustained a SCI prior to age 19 and were enrolled in an ongoing longitudinal study investigating the outcomes of pediatric-onset SCI. Participants were interviewed on an approximately annual basis using a study-specific questionnaire and standardized outcome measures: Satisfaction with Life Scale; Short-Form 12 Health Survey; Alcohol Use Disorders Identification Test; Patient Health Questionnaire-9 Depression Scale; and Craig Handicap Assessment and Recording Technique. Overall, 61% of participants self-reported at least one hospitalization across all time points; average length of hospitalization was 14.8 days (±23.3). Individuals who were ethnic minorities as well as those with high cervical-level SCI were more likely to be hospitalized. Those who were unemployed and those with health-care coverage were more likely to be hospitalized and have longer hospitalization stays. The risk of hospitalization was higher with occurrence of pressure ulcers, urinary tract infections, pneumonia, pain and a chronic medical condition. Smoking cigarettes increased the risk of hospitalization, whereas those who engaged in exercise and were active in the community had lower odds of hospitalization. Both medical and lifestyle factors have an important role in predicting hospitalization. An increased understanding of the risk and protective factors associated with hospitalization should assist clinicians in developing strategies and prevention efforts to minimize secondary health complications and foster healthy lifestyle behaviors.