Journal of Pediatric Rehabilitation Medicine - Volume 12, issue 4
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The Journal of Pediatric Rehabilitation Medicine (JPRM): An Interdisciplinary Approach is designed to parallel the multidisciplinary teams caring for children, adolescents and adults with childhood-onset physical disabilities and complex care needs worldwide. Published quarterly, topics include, and are not limited to, cerebral palsy, traumatic brain injury, spinal cord injury, spina bifida, limb deficiency, muscular dystrophy, stroke, cancer, developmental delays, and rare disorders. Furthermore, the journal welcomes papers dedicated to pediatric rehabilitation from a global health perspective.
The aim of JPRM is to engage a diverse group of international experts with the goal of providing readers with comprehensive information regarding children and adolescents requiring rehabilitation. JPRM brings together specialists from medicine, nursing, psychology, social work, nutrition, child life, family centered care, and occupational, physical, and speech therapy. For manuscript submissions, authorship involving at least two different specialties is encouraged, although not required, to facilitate a transdisciplinary and collaborative approach. Manuscripts are blinded and peer reviewed including biostatistical analysis. Authors are invited to submit original research, systematic and scoping reviews, guidelines, protocols, care pathways, case reports, book reviews, commentaries, editorials, and dates for future conferences.
Abstract: Globally, the number of immigrants, refugees, and internally displaced persons is escalating. While immigration is often a result of social determinants, including political discrimination, poverty, education, and work-related prospects, immigration itself can also be conceptualized as a social determinant of health. Through the National Spina Bifida Patient Registry (NSBPR), investigators have begun to recognize existing disparities within growing minority populations affected by spina bifida. Concurrently these individuals are also living longer, therefore, these demographic shifts in age and ethnicity give rise to the dawn of a new era in care. Thus, a call has gone out for multicenter learning collaboratives…to face these newfound challenges. An example of such emergent learning collaboratives is the American Academy of Pediatrics (AAP) Spina Bifida Transition Project, sponsored by the CDC, an approach in accordance with the recently published Guidelines for the Care of People with Spina Bifida. Henceforth, it can also be trusted that related original research published in JPRM will continue to serve as a catalyst for culturally-competent investigation and comparative analysis to improve care worldwide.
Keywords: Learning collaborative, health disparities, immigrant health, minority health, social determinants of health, globalization/immigration, quality of life, continuum of care transition
Abstract: OBJECTIVE: Intimate partner violence (IPV) prevention among adolescent patients with disability is needed, yet rarely discussed in the clinical setting. This study evaluated the feasibility of implementing a brief educational training based on an evidence-based IPV intervention in a pediatric spina bifida clinic. Frequency of IPV discussion was assessed through evaluation of patient feedback and provider surveys. METHODS: Adolescent patients with spina bifida aged 12–21 completed after visit surveys before (N = 13) and after the provider training (N = 21). Primary outcomes included frequency of…provider discussion about IPV and receipt of patient safety cards. Chi-square tests compared patient feedback prior to and two months following the education session. Provider knowledge and attitude changes were assessed with pre-post surveys. RESULTS: More patients discussed IPV with providers following the education session compared to baseline (p = 0.03). Provider feedback, both immediately and at two months after the education session showed increased awareness of IPV, comfort with assessment, disclosure, and referral to resources. CONCLUSIONS: The educational intervention increased provider comfort with addressing IPV within a specialty clinical setting. The frequency of IPV communication significantly increased as compared to baseline, patients reported the discussions were beneficial, and providers reported greater comfort discussing IPV and referring patients to resources.
Abstract: PURPOSE: Aware of the higher birth prevalence of spina bifida (SB) among Hispanics/Latinos, we aimed to appraise the literature as it relates to cultural context through a review of quality of life (QOL) studies conducted among individuals with SB in order to improve care among immigrant families. METHODS: A systematic review was conducted consistent with the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) guidelines. The inclusion criteria were: (1) children and adolescents (5–21 years of age) with SB and/or myelomeningocele; (2) quantitative studies; (3) health-related QOL outcome measured by validated instrument determinants; and (4) US-based…studies. Articles meeting inclusion criteria were assessed using the focused conceptual framework informing the study (i.e., social determinants of health). RESULTS: Eighteen studies met inclusion criteria, with eight different QOL instruments represented. The majority of studies used generic assessments of QOL (72%), two reported the use of both a generic and a SB-specific QOL measure (11%), and three (17%) documented QOL utilizing a SB-specific validated instrument. Only seven (39%) of the studies stated that they included Hispanics/Latinos and only six (33%) reported including Spanish-speaking individuals. CONCLUSIONS: QOL in individuals with SB is mediated by a wide-range of interrelated factors. In order to better serve this vulnerable population as they transition across the lifespan, multilingual condition-specific QOL measures need to be further developed and implemented among Hispanic/Latino individuals with SB, especially those who are recent immigrants.
Keywords: Myelomeningocele, social determinants of health, blue marble health, health disparities, minority health, immigrant health, global health, Hispanic/Latino, systematic review
Abstract: BACKGROUND: Ethnic disparities in continence rates in spina bifida (SB) have been studied regionally but not nationally. National SB Patient Registry (NSBPR) data were analyzed to explore differences in prevalence of bowel and bladder continence and interventions between Hispanics/Latinos and others. METHODS: Participants 5 to 21 years were categorized into Hispanic/Latino and non-Hispanic/non-Latino. Bladder/bowel continence was defined as dry/no involuntary stool leakage during the day or none/⩽ monthly incontinence. Chi-square test, Wilcoxon Two Sample Test, and generalized estimating equation (GEE) were used for statistical analysis. RESULTS: Twenty-five percent of the 4,364…patients were Hispanic/Latino. At their most recent clinic visit, Hispanics/Latinos demonstrated lower rates of urinary continence (38.6% vs. 44.9%; p = 0.0003), bowel continence (43.9% vs. 55.8%, p < 0.0001), private insurance (p < 0.0001), bowel (p < 0.0001) or bladder surgeries (p = 0.0054), and more vesicostomies (p = 0.0427) compared to others. In multiple GEE models, Hispanic/Latino participants demonstrated lower odds of bowel continence as compared to non-Hispanic/non-Latino participants (estimated odds ratio, 0.82, 95% CI, 0.72–0.94, p = 0.0032). CONCLUSIONS: After controlling for covariates, Hispanics/Latinos with SB are less likely to report bowel continence. Clinicians are encouraged to consider the risk of negative health disparities for Hispanic patients with SB and work to mitigate this risk.
Keywords: Spina bifida, myelomeningocele, health disparities, continence, Hispanic, Latino
Abstract: PURPOSE: Spina Bifida (SB) is a congenital defect of the neural tube resulting in motor and sensory defects and frequently includes insensate skin on the buttocks and feet which are innervated by sacral nerves. For those living in hot climates such as the Southwestern United States, environmental surfaces reach temperatures throughout June-September that cause thermal burns. The objective of this novel case series was to evaluate the circumstances associated with environmental buttocks burns in children with SB who attend the District Medical Group Children’s Rehabilitative Services Myelomeningocele (MM) Planning clinic in Phoenix, AZ. METHODS: Nine children…and adolescents with SB and a history of environmental buttocks burns were identified through participation in the National Spina Bifida Patient Registry at District Medical Group Children’s Rehabilitative Services Myelomeningocele Planning Clinic. Parents and patients were interviewed about the burn circumstances, charts were reviewed, and information was gathered from the NSBPR including level of function and ambulation status. RESULTS: Most of the patients were found to be of emerging independent ages (average age 10 years) and were not with their parents at the time of the burn. All had myelomeningocele (MM), almost all were community ambulators, and all had mid lumbar, low lumbar or sacral level function. There were no non-ambulators. In addition, the majority were wearing incontinence products. CONCLUSIONS: Children and adolescents with MM who are community ambulators, of an emerging independent age, and live in hot climates are at risk of environmental buttocks burns. Enhanced education in environmental thermal burn prevention is important. This education should be particularly focused on the child as they spend more time in settings without their parents. In addition, this enhanced education should extend to those who support the child or teen such as teachers, coaches, family and friends.
Keywords: Spina bifida, myelomeningocele, thermal injury, burn, environmental injury, child, adolescent, Southwestern United States
Abstract: PURPOSE: There is a gap in knowledge regarding the use of emergency services by pediatric spina bifida patients. The goal of this study was to describe Emergency Department utilization patterns in this population. METHODS: Through a retrospective observational study, patients with spina bifida who visited the emergency department during a four-year period were identified; medical and demographic information was obtained though the Centers for Disease Control National Spina Bifida Patient Registry. Chief complaints and final diagnoses of visits were classified and related to medical needs of spina bifida to determine the appropriate care level.…RESULTS: Among 303 children within the registry, 161 patients (53%) accounted for 579 visits. 70% of visits were for spina bifida-related complaints. Approximately half (51.7%) had a shunt-related chief complaint, although final diagnosis was largely unrelated to the shunt. Admission rate was 39%, higher than institutional baseline, and largely represented by genitourinary (GU) complaints. CONCLUSION: Pediatric patients with spina bifida presenting to a single center emergency department were most likely to present with shunt and urinary concerns; these patients were most likely to be admitted. This potentially suggests that improving outpatient care for bladder management may decrease emergency department use among this population.
Keywords: Pediatrics, spina bifida, emergency care, resource utilization, special health care needs
Abstract: PURPOSE: We conducted a needs assessment among parents/guardians of children and independent adults with spina bifida, served by the Spina Bifida Association of Georgia (SBAGA). The objective was to assess if SBAGA is adequately meeting the needs of its constituents and to identify challenges and opportunities to improve services. METHODS: The survey targeted all members of SBAGA in 2017. Survey questions were drafted separately for parents/guardians of children, and independent adults with spina bifida. Both closed- and open-ended response options were provided. The survey was pilot-tested, and administered in English and Spanish, using email, post, or…in person. RESULTS: A total of 119 individuals completed the survey. For parents/guardians (n = 96), the most important needs were bladder and bowel education, social and communication skills education, medical support, and transition and independence training. Independent adults (n = 23) responded that they mostly needed bladder and bowel education, medical support, and transition and independence training. Location of the SBAGA events and transportation to the events were the most frequent limiting factors for both groups. CONCLUSIONS: Our survey findings highlighted that SBAGA services are valued overall. The survey findings will be used to guide quality improvement of current programs, and develop programs addressing emerging needs and challenges.
Keywords: Access to health care, children, needs assessment, neural tube defects, spina bifida, young adults
Abstract: PURPOSE: The purpose of this study was to explore adolescents and emerging adults (AEA) with spina bifida (SB) understanding of their Individualized Education Program (IEP) and to identify factors related to their knowledge about their own IEP. METHODS: Data were collected from January 2015 to July 2016 from 79 adolescents with SB. A ten-item questionnaire including demographics and questions specifically addressing IEPs was used. Qualitative analysis followed an iterative, emergent approach. Two experienced coders independently read and coded each of the three open-ended questions. It was determined that the responses of all three questions could feasibly…be merged as the analysis of responses were similar. FINDINGS: This was a predominately 70 (88.7%) Hispanic sample of AEA with SB who ranged in age from 12 to 20 years (M = 15.3 years) consisting of 41 males and 38 females. All reported they have/had an IEP. Four major themes and eleven subthemes emerged from the analysis. Major themes were: The Barometer of How I Am Doing, Creating the Right Match for Learning, Obtaining the Assistance I Need, and Future Goals and Planning. CONCLUSIONS: Findings of this study reveal the IEP knowledge gaps and lack of lifestyle self-management skills AEA with SB reported pertaining to IEPs.
Keywords: Spina bifida, individualized education program, health care transition planning, adolescents and emerging adults
Abstract: PURPOSE: In order to transition to adulthood and independence, youth with spina bifida must assume significant self-management responsibilities including monitoring for shunt malfunction, maintaining intact skin in areas that are insensate, and maintaining proper bowel and bladder function. Validated measures of specific spina bifida self-management skills are lacking and this hampers the ability of clinical personnel to support successful transition for youth with spina bifida. METHODS: We developed a self-report measure specific to SB self-management skills consistent with the framework of the Transition Readiness Assessment Questionnaire (TRAQ). To test the predictive validity of the tool we…surveyed 90 youth and young adults ages 12-25 with spina bifida attending a multidisciplinary clinic participating in the National Spina Bifida Patient Registry (NSBPR). RESULTS: Adjusted for age, gender, race, insurance status and lesion level, higher scores on the TRAQ-SB (increased self-management) were negatively associated with urinary incontinence in the past month. Only lesion level, and not TRAQ-SB scores, was a significant predictor of stool incontinence and skin breakdown. CONCLUSIONS: Higher TRAQ-SB scores are negatively associated with bladder incontinence in youth with spina bifida. While stool continence and skin breakdown were not associated with TRAQ-SB scores, this relation is complex and may be obfuscated by either reporting bias or outcome measurement bias. To further refine the questionnaire and understand this relationship we need to field it prospectively in the SB network with larger samples. The TRAQ-SB questionnaire, however, does have value in the clinical setting to help promote the acquisition of specific self-management skills among youth with spina bifida.
Keywords: Health care transition, spina bifida, self-management, urinary incontinence, TRAQ
Abstract: PURPOSE: The purpose of this study is to report preliminary evidence to support a new condition-specific measure of transition readiness that is theoretically grounded in the Stages of Changes framework. The Transition Readiness Assessment Questionnaire-Spina Bifida (TRAQ-SB) supplement is a newly developed tool used to measure independence and skill acquisition related to spina bifida. Similar to the Transition Readiness Assessment Questionnaire (TRAQ), the TRAQ-SB uses a 5-point Likert response set. METHODS: Working with a multi-disciplinary team with expertise in the care of children with spina bifida, the authors developed twelve items pertaining to main aspects of…SB self-management. The items were reviewed and revised through several iterations by the team and patients. The items were then fielded at a spina bifida Specialty Clinic, where 93 consecutive patients 12–25 years of age were approached to participate and 90 were administered the 20-item TRAQ and a 12-item TRAQ-SB questionnaire. A principal component analysis (PCA) was conducted on the twelve items with oblique rotation (promax). Criterion validity was also assessed by examining the correlation of the TRAQ-SB supplement with the TRAQ and with age. RESULTS: Results of the factor analysis revealed that eleven of the twelve items loaded onto one factor with factor loadings ranging from 0.46 to 0.84. The scale yielded excellent internal reliability with a Cronbach alpha of 0.90. Correlations of the TRAQ-SB supplement scale score with the TRAQ overall scale score demonstrated good criterion validity (r = 0.74, p < 0.01). In addition, it was highly correlated with the TRAQ subscales, varying from 0.68 to 0.74 (all p < 0.01). Lastly, the TRAQ-SB was significantly correlated with age (r = 0.25, p < 0.01). CONCLUSIONS: Results of our analyses indicated that the TRAQ-SB demonstrated good internal reliability and criterion validity as evidenced by strong correlation with age and the validated TRAQ measure. The TRAQ-SB tool can be useful to incorporate transition readiness assessment and self-management training into routine care for adolescents with spina bifida.
Keywords: Health care transition, transition readiness, spina bifida, self-management, urinary incontinence
Abstract: With an estimated 85% of individuals with spina bifida (SB) surviving into adulthood, SB-specific transition to adult healthcare guidelines are warranted to address the diverse and complex medical, adaptive, and social needs particular to this condition. This commentary discusses the SB Transition Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida , reviews current transition care models in which such guidelines can be implemented, and explores further research topics in SB transition care.