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

Objective: 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). Methods: 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. Results: 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. Conclusion: 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.

Patterns of coping among caregivers of children with spinal cord injury: Associations with parent and child well-being.

INTRODUCTION: Few studies have investigated how caregivers manage stressors associated with their child's spinal cord injury (SCI) and how these patterns relate to their child's coping and adjustment. The current study explored empirically derived coping profiles among caregivers of youth with SCI and the relation of these patterns to parent and youth psychosocial outcomes. METHOD: This was a cross-sectional survey of 318 children (ages 1 to 18) and a primary caregiver. Participants completed measures assessing demographics, coping, quality of life (QOL), anxiety, and depression. We utilized hierarchical and nonhierarchical cluster analyses to identify unique coping patterns and one-way analysis of variance with control variables to assess relations between parental coping and psychosocial well-being. RESULTS: The analyses produced 3 parent coping clusters, which included avoidant (n = 47), constructive (n = 119), and adjusted/low (n = 152). ANCOVAs revealed that parents in the avoidant cluster, who utilized disengagement and blaming strategies, had significantly worse mental health symptoms compared to the constructive and adjusted low coping clusters. Specifically, avoidant coping was significantly related to increased symptoms of caregiver depression (p < .001) and anxiety (p < .001) as well as children's self-report of anxiety (p = .002), depression (p < .005) and emotional QOL (p < .001). DISCUSSION: These findings highlight the importance of fostering constructive and positive coping for both the children who face chronic illness and their caregivers. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

Evaluation of the graded redefined assessment of strength, sensibility and prehension (GRASSP) in children with tetraplegia.

STUDY DESIGN: Psychometric study. OBJECTIVE: To validate the GRASSP in pediatric SCI populations and establish the lower age of test administration. SETTING: United States: Pennsylvania, Maryland, Illinois, Michigan, California, Texas. METHODS: Mean, SD and range of scores were calculated and examined for known-group differences. Test-retest reliability was measured by the intra-class correlation, concurrent validity of the GRASSP against the SCIM, SCIM-SS, and the CUE-Q was measured by the Spearman correlation. RESULTS: GRASSP scores differed between participants with motor complete and incomplete injuries (p = <0.0001-0.036). Test-retest reliability was strong (ICC = 0.99). Weak correlation with the total SCIM (r = 0.33-0.66), and moderate to strong correlation with the SCIM-SC (r = 37-0.70) and CUE-Q (r = 0.40-0.84). CONCLUSION: Results support the validity of the GRASSP and provide evidence that the scores are reliable when administered to children. The GRASSP sensory and strength subtests are recommended for children beginning at 6 years of age, and the GRASSP prehension performance/ability subtest for children beginning at 8 years of age. Normative data are needed for the performance components of the GRASSP.

It is a marathon rather than a sprint: an initial exploration of unmet needs and support preferences of caregivers of children with SCI.

STUDY DESIGN: Focus group study. OBJECTIVES: Explore unmet needs and support preferences of caregivers of youth with spinal cord injury (SCI). SETTING: One pediatric specialty rehabilitation hospital system in the United States. METHODS: Four focus groups were conducted with a convenience sample of 26 caregivers who were primarily mothers (96%) and married (65%), and had at least some college education (85%). Children living with SCI were on average 12.8 years old (SD = 3.3, 8-18). The average age of injury was 4.7 years (SD = 4.4, 0-16.2); mean injury duration was 8.2 years (SD = 3.9, 2-16); 77% had paraplegia; and 58% were male. Focus groups were digitally recorded, transcribed verbatim, and coded using thematic analysis and NVivo. RESULTS: Qualitative data highlighted caregiver perspectives on unmet needs relating to two phases of care: acute and rehabilitation vs. current life with SCI, and two kinds of stressors: those associated with SCI and care vs. those related to other areas of the caregivers' lives, especially their families. Caregivers described stressful interactions with care systems and community services, articulated several concerns regarding well-being of family members, and noted that both they and their children with SCI experienced isolation. Caregivers articulated preferences for additional support from professionals and peers. CONCLUSIONS: Data suggest the need for ongoing caregiver interventions and strengthened family-centered care systems, including professional assistance navigating health systems and peer support. Intervention development would benefit from further qualitative data collection with additional caregivers of youth with SCI, including multiple family members, and families from more diverse care settings.

Prevalence of obesity-related chronic health conditions in overweight adolescents with disabilities.

The prevalence of 15 common obesity-related chronic health conditions was examined in a convenience sample of adolescents, ages 12-18 years old, with mobility and non-mobility limitations (n = 208 and 435, respectively). In both groups, overweight adolescents (BMI ≥ 85th %ile) had a significantly higher number of obesity-related chronic health conditions than their counterparts with healthy weight status (2.74 versus 1.74 for the mobility limitation group, and 1.79 versus 1.45 for the non-mobility limitation group). Prevalence of high blood cholesterol was significantly higher among overweight adolescents than healthy weight adolescents across the two groups. While prevalence of asthma and early maturation appeared to increase as a function of body weight for both groups, a significant difference was found only in the group with non-mobility limitations. Across the two groups, there was a clear tendency toward a higher prevalence of chronic health conditions in overweight adolescents compared to their healthy weight counterparts. Greater efforts must be made to address the higher rates of obesity-related health conditions in youth with disabilities during childhood and adolescence to avoid significant health consequences and health care costs in adulthood.

Obstacles to community participation among youth with spinal cord injury.

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.

Estimation of resting energy expenditure in children with spinal cord injuries.

BACKGROUND/OBJECTIVE: Resting energy expenditure (REE) is the amount of energy needed to maintain energy balance. Prediction equations exist to estimate REE for adults. Recommended dietary allowances (RDA) can be used to estimate energy needs for children but may not be suitable for children with spinal cord injury (SCI). Limited information is available on energy expenditure of children with SCI. Research is needed to determine a method to estimate energy needs for children with SCI. This research project was designed to determine REE in children with SCI who attended an SCI clinic at a children's hospital, determine variables that are correlated to REE in children with SCI, and determine a regression equation to estimate REE in children with SCI. METHODS: A sample of convenience was obtained from children attending the SCI clinic at Shriners Hospitals for Children-Chicago. The REE was measured after a 4-hour fast using a portable hand-held MedGem device to perform indirect calorimetry. Data including height, weight, age, months since injury, level of injury, gender, race, American Spinal Injury Association (ASIA) Motor Score, ASIA Impairment Score, and body mass index were obtained as covariates. RESULTS: Regression equations to predict REE were developed for boys and girls. The REE varied significantly from results obtained using both RDA and the Harris-Benedict equation. Height and level of injury were the only variables that correlated with REE in this sample. CONCLUSIONS: Measured REE was lower than the results of prediction equations. A regression equation was developed to estimate REE in children with SCI based on height and level of injury. Further validation studies are needed.

Community integration among adults with spinal cord injuries sustained as children or adolescents.

The purpose of this study was to determine factors associated with community integration of adults who sustained spinal cord injuries as children or adolescents. Outcome measures included the Craig Handicap Assessment and Reporting Technique and measures of independent living. Independent variables include demographic factors, level of injury, functional independence as measured by the Functional Independence Measure, and perceived health as measured by Short Form-12 physical and mental component scores. Data were analyzed by multiple regression analyses for each of the outcome measures. Two-hundred and sixteen adults (150 males and 66 females) were interviewed. Mean age at interview was 29 years (range 24 to 27 years) and mean age at injury was 14 years (range 0 to 18 years). Results showed that the five factors most strongly associated with community integration were education level, employment, income, functional independence, and health status. Factors that were not associated with community integration included sex, age at injury, duration, and level of injury.

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

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 18 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.