Journal of Pediatric Rehabilitation Medicine - Volume Pre-press, issue Pre-press

Authors: Berry, Jay G. | Casto, Elizabeth | Dumas, Helene | O’Brien, Jane | Steinhorn, David | Marks, Michelle | Traul, Christine | Wilson, Karen | Simpser, Edwin

Article Type: Research Article

Abstract: PURPOSE: The need for pediatric post-acute facility care (PAC) is growing due to technological advances that extend the lives of many children, especially those with complex medical needs. The objectives were to describe [1 ] the types and settings of PAC; [2 ] the clinical characteristics of the pediatric patients requiring PAC; and [3 ] perceptions of PAC care delivery by clinical staff. METHODS: An online survey was administered between 6/2018 to 12/2018 to administrative leaders in PAC facilities that have licensed beds for children and who were active members of the Pediatric Complex Care Association. Survey topics …included types of health services provided; pediatric patient characteristics; clinical personnel characteristics; and perceptions of pediatric PAC health care delivery. RESULTS: Leaders from 26 (54%) PAC facilities in 16 U.S. states completed the survey. Fifty-four percent identified as skilled nursing facility/long-term care, 19% intermediate care facilities, 15% respite and medical group homes, and 12% post-acute rehabilitation facilities. Sixty-nine percent of facilities had a significant increase in the medical complexity of patients over the past 10 years. Most reported capability to care for children with tracheostomy/invasive ventilation (100%), gastrostomy tubes (96%), intrathecal baclofen pump (89%), non-invasive positive pressure ventilation (85%), and other medical technology. Most facilities (72%) turned away patients for admission due to bed unavailability occasionally or always. Most facilities (62%) reported that insurance reimbursement to cover the cost of providing PAC to children was not acceptable, and most reported that it was difficult to hire clinical staff (77%) and retain staff (58%). CONCLUSION: PAC in the U.S. is provided to an increasingly medically-complex population of children. There is a critical need to investigate financially-viable solutions for PAC facilities to meet the patient demands for their services and to sufficiently reimburse and retain staff for the challenging and important care that they provide. Show more

Keywords: Post-acute care, subacute, pediatrics, children with medical complexity

DOI: 10.3233/PRM-201519

Citation: Journal of Pediatric Rehabilitation Medicine, vol. Pre-press, no. Pre-press, pp. 1-8, 2022

Authors: Lohiya, Nirali | Chalipat, Shiji | Lohiya, Nikhil | Malwade, Sudhir

Article Type: Case Report

Abstract: PURPOSE: Coffin-Siris syndrome (CSS) is a rare genetic disorder characterized by the presence of particular facies, congenital malformations, intellectual developmental disorder, behavioral issues, and speech and language impairment. Thorough neuropsychological assessments in the case of CSS have been reported infrequently, and its subdomains are poorly defined. A detailed description of the clinical, neurocognitive, behavioral, socio-adaptive sequelae of the patient with CSS is provided. RESULTS: The clinical diagnosis in the patient was confirmed by genetic analysis, which identified the presence of mutation of ARID1B gene; the parents’ Sanger sequencing reported normal. The neuropsychological assessments revealed borderline intellectual functioning (IQ-75, …verbal >  performance) with a mild socio-adaptive deficit score of 64 as suggested by the adaptive scale. The behavioral profile reported that the child had significant difficulties in the attention subdomain with concern in social and thought subdomains. The child met the profile for mild severity of Autism Spectrum Disorder and did not meet the criteria for Attention Deficit Hyperactivity Disorder. In addition, the child had scholastic difficulties in reading and mathematical skills. CONCLUSION: Neurocognitive, behavioral, socio-adaptive functioning and comorbidity assessment in order to provide holistic management of such children after thorough evaluation is essential for their overall functioning. Show more

Keywords: Coffin-siris syndrome, developmental delay, neurocognitive, behavioral, socio-adaptive

DOI: 10.3233/PRM-210050

Citation: Journal of Pediatric Rehabilitation Medicine, vol. Pre-press, no. Pre-press, pp. 1-4, 2022

Authors: Galeoto, Giovanni | Mignolli, Ester | Tofani, Marco | Sogos, Carla | Servadio, Annamaria | Valente, Donatella | Berardi, Anna

Article Type: Research Article

Abstract: PURPOSE: Down Syndrome (DS) is a common genetic disorder caused by trisomy 21. Due to cognitive challenges associated with DS, individuals often experience difficulty performing activities of daily living (ADLs), at levels that can range from mild to significant. This study aimed to measure psychometric properties of the Italian version of the Pediatric Evaluation of Disability Inventory (PEDI-I) in the DS population. METHODS: The PEDI-I was administered to children with DS. The internal consistency was examined using Cronbach’s Alpha. Test-retest reliability was demonstrated by intraclass correlation coefficient (ICC) and Bland–Altman plots. The concurrent validity was evaluated with the …Italian version of the Barthel Index. RESULTS: The PEDI-I was administered to 54 children with DS. Cronbach’s Alpha showed statistically significant values (0.899 –0.986). The ICC confirmed the reproducibility of the scale with a range of (0.988 –1), while Bland-Altman plots showed a smallest detectable change of (0.18–1.63). The Pearson Correlation Coefficient with the Barthel Index showed statistically significant values for all PEDI-I subscales (range 0.75–0.95). CONCLUSION: The study provides evidence of good test-retest reliability and convergent validity when used in children with DS. Other psychometric proprieties need to be investigated in future studies. Show more

Keywords: Down syndrome, PEDI, reliability, psychometric properties

DOI: 10.3233/PRM-190674

Citation: Journal of Pediatric Rehabilitation Medicine, vol. Pre-press, no. Pre-press, pp. 1-11, 2022

Authors: Moser, Alana | Wirt, Stephen Z. | Niedzwecki, Christian

Article Type: Case Report

Abstract: Determining when a child returns to school after an acquired brain injury is difficult to assess. Many factors affect a successful hospital-to-school reintegration. The hospital school simulation allowed the Acute Pediatric Inpatient Rehabilitation Unit (IRU) interdisciplinary team to assess how the patient was functioning at specific stages of the patient healing process to target goals that explicitly helped the patient safely reintegrate into school. A patient with an acquired brain injury (ABI) participated in a hospital school simulation where a novel school simulation rubric (SSR) tool was used to evaluate completion of specific activities the patient would experience in a …traditional classroom. Results were shared with the IRU team so accommodations and modifications could be made to the IRU school recommendations letter based on the results of the final SSR. Preliminary results were found to benefit the patient as they reintegrated back to school. This study highlights the need for ongoing communication between hospital providers and educational personnel to provide patients with academic supports for school reintegration. Show more

Keywords: Acquired brain injury, school reintegration, special education

DOI: 10.3233/PRM-210052

Citation: Journal of Pediatric Rehabilitation Medicine, vol. Pre-press, no. Pre-press, pp. 1-5, 2022

Authors: Szewczyk, Anna K. | Mitosek-Szewczyk, Krystyna | Dworzańska, Ewa

Article Type: Review Article

Abstract: Music is an art form that strongly affects people and can elicit many different emotions at the same time, including happiness, anxiety, sadness, and even ecstasy. What is it about music that causes such a strong reaction from each of us? Music engages many senses, which in turn can produce a multiplicity of responses and help create more extensive neuronal connections, as well as influence behaviour through structural and functional changes in the brain. Music-based interventions as a therapeutic tool in rehabilitation are becoming more common. It is said that the impact of music on the human body is positive. …However, what impact does music have on the young nervous system, especially the affected one? This review presents the advantages and disadvantages of the use of music in paediatric neurology to treat dyslexia, cerebral palsy, and stroke, among others. Potential negative impacts such as musicogenic epilepsy and hallucinations will be discussed. Show more

Keywords: Music, music therapy, brain, neuroplasticity, children and adolescents, neurological disorders

DOI: 10.3233/PRM-200802

Citation: Journal of Pediatric Rehabilitation Medicine, vol. Pre-press, no. Pre-press, pp. 1-16, 2022