Journal of Pediatric Rehabilitation Medicine - Volume 13, issue 3

Authors: McLaughlin, Matthew

Article Type: Editorial

Abstract: The role of pediatric rehabilitation providers during the Coronavirus Disease 2019 (COVID) pandemic of 2020 highlighted the need for improved knowledge about medications utilized in pediatric patients. Pediatric patients with cerebral palsy who were previously receiving botulinum toxin injections on a regular basis went prolonged periods of time between injections, and patients who have intrathecal baclofen pumps were called in to get refills with different intervals. The medically complex patients treated by rehabilitation providers were limited in the type and scope of care they received, and some may have developed adverse outcomes related to this delay in care. As a …Pediatric Physiatrist who has advanced training and significant research experience within the realm of Clinical Pharmacology, I have seen this pandemic demonstrate the Sisyphean challenge of continuing appropriate tone management in patients with cerebral palsy while ensuring those patients with neuromuscular conditions maintain their highest level of function. Both of these clinical problems received significant attention within this issue, which I hope allows providers taking care of these populations a reference point to take to the bedside. Show more

Keywords: Pediatrics, rehabilitation, COVID-19

DOI: 10.3233/PRM-200026

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 221-223, 2020

Authors: Pico, Elaine L.

Article Type: Editorial

DOI: 10.3233/PRM-200027

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 225-227, 2020

Authors: Vercler, Christian

Article Type: Editorial

Keywords: Ethics, COVID-19, vaccine, coronavirus

DOI: 10.3233/PRM-200025

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 229-231, 2020

Authors: Habib-Hasan, Zehra | Sheikh, Memoona Salman | Hoodbhoy, Zahra | Azam, Iqbal | O’Neil, Margaret

Article Type: Research Article

Abstract: PURPOSE: The aim of this study was to evaluate the feasibility and effectiveness of the Parent Empowerment Program (PEP) to help caretakers deliver a home program to promote developmental activities and gross motor function in their children with Down syndrome. METHODS: Parents attended a 14-month program with training sessions 1–4 times a month. Outcomes were measured using a change in the Gross Motor Function Measure (GMFM-88) at baseline and assessment one. RESULTS: Forty-eight families participated in the PEP. Children’s mean age was 16.2 ± 10.8 months. There were significant changes …in GMFM-88 scores between baseline and assessment one; t (30) = - 9.158, p < 0.001; 95% CI - 14.6 – - 22.9. Previous hospitalization significantly affected GMFM scores. CONCLUSION: This study describes a clinically applied research that focuses on program design, development and evaluation. Findings indicate that the PEP is effective in improving gross motor function in children with Down’s syndrome in Pakistan. Parents were satisfied with the program outcomes and were able to cope with the requirements at home. The PEP had favorable outcomes and may be an effective method to support PT services in resource poor countries. Show more

Keywords: Down syndrome, Pakistan, parent education

DOI: 10.3233/PRM-190605

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 233-240, 2020

Authors: Badger, Sarah | Waugh, Mary-Clare | Hancock, Jan | Marks, Susan | Oakley, Karen

Article Type: Research Article

Abstract: PURPOSE: Abusive head trauma (AHT) can have debilitating sequelae for children who survive. A retrospective medical record review was used to describe short-term developmental outcomes of children with AHT and identify predictors of poorer outcomes. METHOD: Children with AHT who received follow up by the hospital’s rehabilitation department for 12 to 24 months post-injury were included in this review. Data for 85 children were collected on hearing, vision, gross motor, fine motor, speech and language, cognition, play, adaptive functioning, behaviour and personal-social skills. RESULTS: Global assessment found 42% of children had a good …recovery, 34% had a moderate disability and 24% had a severe disability. For whom there was data, more than half had abnormal cognition, behaviour and personal-social skills, whilst more than a third had abnormal speech and language, neurological signs on last assessment, vision, play skills, and gross and fine motor skills. Factors that predicted poorer prognosis across all developmental domains included paediatric intensive care unit admission, longer length of hospital stay, breathing difficulty and lower Glasgow Coma Scale on presentation. CONCLUSION: This study highlights the substantial number of children who have abnormal development in the short-term post-AHT and assists in identifying those who require extensive long-term follow up. Show more

Keywords: Abusive head trauma, developmental outcomes, paediatric rehabilitation, paediatric brain injury, shaken baby syndrome

DOI: 10.3233/PRM-190624

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 241-253, 2020

Authors: Gilardone, Giulia | Fumagalli, Francesca Maria | Monti, Alessia | Pintavalle, Giuseppe | Troletti, Isabella Derada | Gilardone, Marco | Corbo, Massimo

Article Type: Case Report

Abstract: PURPOSE: There is a general lack of evidence on the efficacy of rehabilitation training methods after childhood stroke. The aim of the current paper is to provide an example of a multidisciplinary assessment and intensive patient-centered rehabilitation program that was devised following the Clinical Guidelines for Childhood Stroke Diagnosis, Management and Rehabilitation, based on the International Classification of Functioning, Disability and Health. METHOD: The case of a 13-year-old teenager with physical, linguistic, cognitive and emotional impairments after acute ischemic stroke (AIS) in left middle cerebral artery territories is presented and his neurorehabilitation program is described. …RESULTS: After an intensive and comprehensive rehabilitation period, the patient showed significant improvement involving language abilities, cognitive flexibility, logical reasoning and motor independence. A 6-month post-stroke follow-up evaluation showed further gains in spontaneous language, improved motivation and collaboration, reduction of impulsiveness and better general motor stability. CONCLUSION: This case highlights how an intensive, patient-centered, interdisciplinary rehabilitation approach can lead to good improvement across different domains, maximizing the spontaneous recovery in children and adolescents after AIS. Show more

Keywords: Pediatric stroke, multidisciplinary rehabilitation, intensive treatment, ICF

DOI: 10.3233/PRM-190636

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 255-262, 2020

Authors: Hansen-Jaumard, Delphine | Elfassy, Caroline | Montpetit, Kathleen | Ghalimah, Bayan | Hamdy, Reggie | Dahan-Oliel, Noemi

Article Type: Research Article

Abstract: PURPOSE: Arthrogryposis multiplex congenita (AMC) refers to a large heterogeneous group of conditions involving joint contractures in two or more different areas of the body. Contractures can lead to decreased range of motion and strength, and affect ambulation and autonomy. The aim of this study was to describe the orthopedic interventions and functional outcomes of a large cohort of children with AMC followed in a pediatric orthopedic center. METHODS: A retrospective chart review of all children diagnosed with AMC followed at Shriners Hospital for Children – Canada (SHC) between January 1979 and July 2016 was conducted. …One hundred twenty patients were identified, of whom six were excluded due to misdiagnosis or insufficient chart information. One hundred fourteen were retained. Patient demographics, AMC classification, comorbidities, operative and non-operative treatments received as well as community ambulation status, level of autonomy in self-care and transfers at latest follow-up were recorded. RESULTS: There were 54 males and 60 females with a mean age at last clinic visit of 10 years 3 months. Amyoplasia and distal arthrogryposis (DA) were equally represented in our sample, 47 (41.2%) and 49 (43.0%) participants respectively, with the category Other comprising the remaining 18 (15.8%) participants. Children with DA had less involvement of the proximal joints than those in the two other groups. Contractures and deformities of the foot and ankle were the most prevalent, affecting 91.5% with Amyoplasia, 85.7% with DA and 83.3% in the Other category. Contractures of the shoulder and elbow were more common among individuals with Amyoplasia and those categorized Other than those with DA. In terms of walking ability, 98% of participants with DA were independent ambulators. Walking ability varied among the Other participants. Similarly, most children with DA were independent in self-care and transfers at the most recent follow-up. CONCLUSION: The relatively large sample size of this study allowed for a better insight into the challenges associated with AMC management. These findings demonstrated the need for genetic testing to provide accurate diagnosis and classification, along with the use of standardized outcome tools to measure effectiveness of interventions. As AMC is rare, multi-site prospective studies are needed to improve research opportunities, develop functional measures specific to AMC and disseminate findings on a wider scale. Show more

Keywords: Arthrogryposis multiplex congenita, surgical management, rehabilitation, functional outcome, ambulation, self-care

DOI: 10.3233/PRM-190657

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 263-271, 2020

Authors: McLaughlin, Matthew J. | Fisher, Mark T. | Vadivelu, Sathya | Ramsey, Justin | Ratnasingam, Denesh | McGhee, Emily | Hartman, Kim

Article Type: Research Article

Abstract: PURPOSE: After the onset of the Coronavirus pandemic of 2019–2020 (COVID-19), physicians who inject OnabotulinumtoxinA (BoNT-A) were left with determining risks and benefits in pediatric patients with cerebral palsy. Many of these patients have pre-existing conditions that make them more prone to COVID-19 symptoms, and this susceptibility potentially increases after BoNT-A injections. METHODS: A retrospective chart review of 500 patients identified 256 pediatric patients with cerebral palsy who received an intramuscular BoNT-A injection to determine relative doses used for each Gross Motor Functional Classification Score (GMFCS). Data regarding age, weight, GMFCS, BoNT-A total body dosage, and …inpatient hospitalizations for 6 months post-injection were collected. Differences between GMFCS levels were analyzed using one-way analysis of variance testing. Inpatient hospitalizations were recorded and assessed using relative risk to determine the population risk of hospitalization in the setting of initiating injections during the COVID-19 pandemic. RESULTS: Based on GMFCS level, patients who were GMFCS I or II received fewer units of BoNT-A medication per kilogram of body weight compared to GMFCS III–V (p < 0.0005, F = 25.38). There was no statistically significant difference in frequency or time to hospitalization when comparing patients receiving BoNT-A compared to a control group. CONCLUSIONS: Resumption of BoNT-A injections during the time of COVID-19 requires a systematic approach based on risks and potential benefits. Data from this analysis does not show increased risk for patients who received injections historically; however, recommendations for resumption of injections has not previously been proposed in the setting of a pandemic. In this manuscript, a tiered approach to considerations for injections was proposed. Botulinum toxin type A injections have a history of improving spasticity in the pediatric patient with cerebral palsy. Ensuring appropriate selection of patients for injection with BoNT-A during this pandemic is increasingly important. Show more

Keywords: Cerebral palsy, botulinum toxins, drug-related side effects and adverse reactions, adverse events, COVID-19

DOI: 10.3233/PRM-200756

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 273-279, 2020

Authors: Dietzen, Anton | Ide, William | Pavone, Larissa

Article Type: Research Article

Abstract: PURPOSE: Telehealth services have been touted to improve access to specialty pediatric care. COVID-19 accelerated the adoption of telehealth across many medical specialties. The purpose of this study was to examine telehealth utilization and satisfaction among pediatric physiatrists. METHODS: Using Google Forms, a voluntary survey was created and administered to pediatric physiatrists. The survey collected information on practice setting, telehealth utilization, provider satisfaction, perceived satisfaction of patients and families, and the anticipated role of telehealth in pediatric rehabilitation going forward. RESULTS: Seventy-eight respondents completed the survey. There was a significant reported increase in …telehealth utilization since COVID-19 from 14.5% to 97.4%. Eighty-two percent of participants reported feeling comfortable utilizing telehealth, 77% felt confident in the quality of the care provided, and 91% believed patients were satisfied with telehealth visits. Responses indicate that telehealth is expected to play a role in future pediatric physiatry and interest in telehealth continuing medical education is prevalent. Most pediatric physiatrists plan to continue or expand telehealth offerings after COVID-19. CONCLUSION: Telehealth adoption has been expedited by COVID-19. Physician interest in and satisfaction with telehealth is high. Patient and family perceptions, outcomes of care, and barriers to implementation limiting program expansion deserve further study. Show more

Keywords: Telehealth, telemedicine, pediatric rehabilitation, COVID-19, PRM, pediatric physiatry

DOI: 10.3233/PRM-200762

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 281-288, 2020

Authors: Kivlehan, Emily | Chaviano, Kelli | Fetsko, Lauren | Javaid, Simra | Chandan, Priya | Rojas, Ana-Marie | Dubon, Mary E.

Article Type: Research Article

Abstract: PURPOSE: The COVID-19 pandemic hastened the need for graduate medical education (GME) innovation, resulting in the creation of multiple pediatric rehabilitation medicine (PRM) e-learning initiatives. There has been a paucity of data regarding trainee perceptions regarding quickly developed new methods of learning during the pandemic. This study explored PRM trainee perceptions of e-learning and effects of the pandemic on education. METHODS: Questionnaire study with data collected via REDCap. RESULTS: Greater than half of PRM trainees (56.6%, 30/53) responded. Most respondents reported that the virtual lectures series (79.3%), journal club (78.9%), and virtual arts …initiatives (75.0%) were valuable to their education. Common benefits noted included access to subject experts, networking, lecture recording, and location flexibility. Common concerns included lack of protected time, virtual platform fatigue, and decreased engagement. Most respondents were not redeployed. Relative to before the pandemic, less satisfaction with clinical education (70.0%) and greater satisfaction with non-clinical education (60.0%) was reported. The majority of graduating trainees felt positively (83.3%) and 16.7% were neutral regarding confidence to graduate. CONCLUSION: Trainees perceived national e-learning as valuable to their education, especially due to the access to expert leaders around the nation. Future work should explore ways to overcome barriers and optimize benefits of GME and PRM e-learning. Show more

Keywords: Pediatric Rehabilitation Medicine, e-learning, graduate medical education, COVID-19, asynchronous learning, online learning, virtual learning

DOI: 10.3233/PRM-200765

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 289-299, 2020

Authors: Panigrahy, Neha | Policarpio, Joseph | Ramanathan, Rahul

Article Type: Review Article

Abstract: PURPOSE: The pandemic caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has infected over 43 million people resulting in over 1 million deaths. Approximately 2% of cases in the United States are children, and in most cases the child is either asymptomatic or has mild symptoms. However, some pediatric cases can present with Multisystem Inflammatory Syndrome (MIS-C). Understanding the epidemiology, clinical presentation, and management of MIS-C related to SARS-CoV-2 will help to streamline early diagnosis and treatment, particularly in pediatric patients with complex medical conditions. METHODS: This scoping review adopted methods from the Joanna Briggs …Institute (JBI) manual for evidence synthesis and preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (PRISMA-ScR) guidelines. Primary studies of patients meeting the Centers for Disease Control and Prevention (CDC) criteria for MIS-C from December 31 st , 2019 to Oct 5 th , 2020 were identified using PubMed and Scopus. Articles were screened for eligibility, and data collection was conducted on those fulfilling inclusion criteria. RESULTS: Of 417 studies identified, 57 met inclusion criteria, accounting for 875 patients from 15 countries. Globally, 57% of children affected with MIS-C were males. The median age was 9 years old, ranging from 6 months to 21 years. Forty-five percent of the patients had underlying comorbidities including obesity and lung disease. Fever, conjunctivitis and GI symptoms were common. Most MIS-C patients had high biomarkers including troponin I, N-terminal prohormone of B-type natriuretic peptide (NT-proBNP), D-dimer, erythrocyte sedimentation rate (ESR), C-reactive protein (CRP), white blood cells (WBCs), interleukin 6 (IL-6), procalcitonin, and ferritin. The treatment for most patients included IVIG and inotropic support. CONCLUSION: MIS-C can be a unique and potentially life-threatening manifestation of SARS-CoV-2 in children and often requires medical intervention. Show more

Keywords: Multisystem inflammatory syndrome in children, MIS-C, multisystem inflammatory syndrome, PIM-TS, SARS-CoV-2, COVID-19, coronavirus in children, kawasaki disease, kawasaki vasculitis, kawasaki-like multi-system inflammatory disease

DOI: 10.3233/PRM-200794

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 301-316, 2020

Authors: Brandenburg, Joline E. | Fogarty, Matthew J. | Sieck, Gary C.

Article Type: Review Article

Abstract: Respiratory dysfunction is a leading cause of morbidity and mortality in individuals with cerebral palsy (CP). In children and adults with CP, movement and physical function is always affected. Yet, many clinicians overlook potential for impaired movement and function of the diaphragm muscle (DIAm) in individuals with CP. Since individuals with pre-existing respiratory disorders are at greater risk for respiratory complications if they contract COVID-19, understanding potential risks to individuals with CP is important. In this review we present research on respiratory function and DIAm force generation in children with CP. We compare this clinical work to basic science research …investigating phrenic motor neuron and DIAm motor unit dysfunction in an animal model with CP symptoms, the spa mouse. Finally, we integrate the clinical and basic science work in respiratory function in CP, discussing potential for individuals with CP to have severe respiratory symptoms from COVID-19. Show more

Keywords: Diaphragm, cerebral palsy, respiratory, motor neuron, COVID-19

DOI: 10.3233/PRM-200746

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 317-327, 2020

Authors: Sukhov, Renat | Asante, Afua | Ilizarov, Gavriil

Article Type: Review Article

Abstract: The coronavirus (COVID-19) pandemic triggered wide scale implementation of telemedicine in the United States. The government response, Coronavirus Aid, Relief, and Economic Security (CARES) Act, permitted loosening of existing restrictions on telemedicine enabling its rapid incorporation into the delivery of medical care for children and adults. Prior to COVID-19, few pediatric physiatrists had opportunities to access high fidelity telemedicine platforms to provide health care for patients with special needs, mobility impairments, developmental delays, neuromuscular disorders or other complex medical conditions. This literature review will explore how telemedicine can optimize health care delivery options for pediatric physiatrists in various inpatient and …outpatient settings such as consultations, acute inpatient units, outpatient clinics and long-term care facilities. Detailed analysis of the current research in telemedicine applications as well as a critical review of the limitations and barriers for its use offers a plethora of opportunities for enhancement of continuity and coordination of care. Telemedicine may decrease healthcare disparities and increase access of care for children with special needs. Additional research is needed to assess the efficacy of telemedicine when addressing complex medical conditions in children. Show more

Keywords: Telemedicine, physical medicine and rehabilitation (PM&R), pediatric rehabilitation medicine (PRM), pediatric physiatrist, COVID-19, CARES Act, children with special needs

DOI: 10.3233/PRM-200747

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 329-338, 2020

Authors: Sholas, Maurice G.

Article Type: Other

Abstract: The COVID-19 pandemic has had a significant health impact around the world. In the United States, there has been a difference in infection and death rates for Black Americans and other marginalized groups as compared to White Americans. Although children do not seem to be suffering infection, morbidity and mortality to the same degree as adults, there is concern that COVID-19 could have a disparate impact on children with acquired or congenital disabilities when analyzed through the lens of race and equity. The possibility that there could be a differential effect on rehabilitation services relates to: the risk of familial/parental …exposure leading to secondary infection, the negative economic impact of public health measures required to control disease spread, and the pre-existing social factors that impact access to healthcare. Finally, the psychosocial stresses imposed by COVID-19 inflame risk factors for non-accidental injury, which could lead to an increased need for pediatric rehabilitation services in vulnerable populations. It is critical that individual providers, as well as the health systems in which they practice, actively focus on mitigating personal and systemic causes of racial and ethnic health outcome disparities. These efforts need to move beyond a race neutral construct to specifically anti-racist activity. Show more

Keywords: Health disparities, equity, coronavirus, COVID-19, pediatrics, marginalized population, disability, rehabilitation, function, Black children, Latino children, Native American children

DOI: 10.3233/PRM-200722

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 339-344, 2020

Authors: Kelly, Kiersten

Article Type: Position Paper

Keywords: Medical Education, Medical Students, COVID-19, tele-education, virtual learning

DOI: 10.3233/PRM-200733

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 345-347, 2020

Authors: Bellomo, Tiffany R. | Prasad, Sanjana | Munzer, Tiffany | Laventhal, Naomi

Article Type: Short Communication

Abstract: In the unprecedented disruption and social isolation of the COVID-19 pandemic, families around the world are faced with questions of how their children can thrive in these conditions. On top of the ubiquitous challenges for all children, this public health crisis imparts unique difficulties for children with special health needs. We identify children with Autism Spectrum Disorder (ASD) as being particularly vulnerable to negative impacts of the COVID-19 pandemic. In this paper, we examine why children with ASD are uniquely vulnerable, recommend strategies to mitigate these stressors for children with ASD and their parents, explore the potential challenges of reintegration …into society as conditions improve, and examine the obligations of healthcare and community stakeholders to support these families. Show more

Keywords: Autism Spectrum Disorder, COVID-19 pandemic, social isolation, childcare strategies

DOI: 10.3233/PRM-200740

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 349-354, 2020

Authors: Rabatin, Amy E. | Lynch, Mary E. | Severson, Matthew C. | Brandenburg, Joline E. | Driscoll, Sherilyn W.

Article Type: Other

Abstract: The COVID-19 pandemic has accelerated many changes in medicine including the transition from providing care in person to providing care via technology enabled telemedicine. The benefits of telemedicine visits with a Pediatric Rehabilitation Medicine (PRM) provider, also known as telerehabilitation medicine visits, are numerous. Telerehabilitation medicine provides an opportunity to deliver timely, patient and family-centric rehabilitation care while maintaining physical distance and reducing potential COVID-19 exposure for our patients, their caregivers and medical providers. Telerehabilitation medicine also allows for access to PRM care in rural areas or areas without medical specialty, virtual in-home equipment evaluation, and reduced travel burden. Because …of these and many other benefits, telerehabilitation medicine will likely become part of our ongoing model of care if barriers to telemedicine continue to be lowered or removed. This paper is intended to establish a foundation for pediatric telerehabilitation medicine visit efficiency and effectiveness in our current environment and into the future. Show more

Keywords: Telemedicine, telehealth, telerehabilitation, virtual visit, rehabilitation, pediatrics, COVID-19, physical examination, caregivers

DOI: 10.3233/PRM-200748

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 355-370, 2020

Authors: Kana, Lulia A. | Shuman, Andrew G. | Helman, Jennifer | Krawcke, Kelly | Brown, David J.

Article Type: Short Communication

Abstract: The COVID-19 pandemic is exacerbating longstanding challenges facing children with tracheostomies and their families. Myriad ethical concerns arising in the long-term care of children with tracheostomies during the COVID-19 pandemic revolve around inadequate access to care, healthcare resources, and rehabilitation services. Marginalized communities such as those from Black and Hispanic origins face disproportionate chronic illness because of racial and other underlying disparities. In this paper, we describe how these disparities also present challenges to children who are technology-dependent, such as those with tracheostomies and discuss the emerging ethical discourse regarding healthcare and resource access for this population during the pandemic.

Keywords: COVID-19, ethics, pediatric tracheostomy, chronic disability

DOI: 10.3233/PRM-200749

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 371-376, 2020

Authors: Houtrow, Amy J. | Garcia, Angela

Article Type: Short Communication

Keywords: Virtual, education, rehabilitation

DOI: 10.3233/PRM-200754

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 377-378, 2020

Authors: Thomas, Sruthi P. | Hardesty, Christina K. | Buxton, Kristin A. | Collins, Andrew B. | Pruente, Jessica | Pham, Kelly L.D. | Sheriko, Jordan | McClanahan, M. Elise | Inanoglu, Didem | Srinivasan, Rajashree | Ridnour, Laura | Cooper, Robert | Khurana, Seema | Network, the Pediatric ITB

Article Type: Short Communication

Abstract: The COVID-19 pandemic has been a challenge to healthcare systems around the world. Within pediatric rehabilitation medicine, management of intrathecal baclofen has been particularly challenging. This editorial reviews how programs in the US and Canada coped with the quickly changing healthcare environment and how we can learn from this pandemic to be prepared for future crises.

Keywords: Intrathecal baclofen, COVID-19, risk of exposure, pump

DOI: 10.3233/PRM-200755

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 379-384, 2020

Authors: Nulle, Jill | Nelson, Virginia Simson

Article Type: Short Communication

Abstract: Telemedicine has emerged as a vital tool for continuing to provide therapy to children with disabilities throughout the course of the COVID-19 pandemic. While video visits have certain advantages, such as the ability to see the children in their home, they also have potential drawbacks, as some exam maneuvers and objective measurement tools cannot be performed virtually. The increased utilization of telemedicine also raises questions about access to care. Video visits can remove the transportation and time barriers that some families face. However, they raise new barriers, such as a requirement for home internet access and insurance coverage, that may …negatively impact access to care for certain patients. Moving forward, a combination of clinic and video visits in pediatric rehabilitation may be the best way to harness the advantages of both modalities while minimizing their disadvantages. Our article discusses issues relating to rehabilitation therapy delivered via virtual visits, but further study is needed to examine whether video visits achieve similar outcomes to clinic visits. Show more

Keywords: Teletherapy, video visits, disabilities, pediatrics, access to care, pandemic, COVID-19

DOI: 10.3233/PRM-200759

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 385-388, 2020

Authors: Mortell, Thomas J. | Strobel, Austin T.

Article Type: Short Communication

Abstract: The novel coronavirus, the cause of COVID-19, has sent shockwaves throughout the world, shuttered many businesses essentially overnight, and has left billions living worldwide in quarantine. Not surprisingly, the health care industry has been significantly affected by the COVID-19 pandemic. This article focuses on how COVID-19 has influenced the Office for Civil Rights’ (OCR’s) enforcement of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security Rules as they relate to telehealth remote communications, and opines about whether the COVID-19-related changes to HIPAA Privacy Rule and Security Rule enforcement might last beyond the current crisis.

Keywords: COVID-19, safety protocols, construction, industry

DOI: 10.3233/PRM-200760

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 389-392, 2020

Authors: Doebrich, Adrienne | Quirici, Marion | Lunsford, Christopher

Article Type: Other

Abstract: The COVID-19 era exposes what was already a crisis in the medical profession: structural racism, ageism, sexism, classism, and ableism resulting in healthcare disparities for Persons with Disabilities (PWD). Early research highlights these disparities, but we do not yet know the full impact of this pandemic on PWD. Over the last 20 years, many medical schools have attempted to develop disability competency trainings, but discrimination and inequities remain, resulting in a pervasive distrust of medicine by the disability community at large. In this commentary, we suggest that disability competency is insufficient because the healthcare disparities experienced by PWD are not …simply a matter of individual biases, but structural and systemic factors requiring a culture shift in the healthcare professions. Recognizing that disability is a form of diversity that is experienced alongside other systemic disadvantages like social class, race, age, sex, gender identity, and geographic location, we explore the transformative potential of disability conscious medical education, training, and practice that draws on insights from intersectional disability justice activism. Disability conscious medicine is a novel approach, which improves upon competency programs by utilizing disability studies and the principles of disability justice to guide us in the critique of norms, traditions, and institutions to more fully promote the respect, beneficence, and justice that patients deserve. Show more

Keywords: Disability, disability justice, medical training, diversity, COVID-19

DOI: 10.3233/PRM-200763

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 393-404, 2020

Authors: Stratton, Anne Troike | Roberts III, Richard Ogden | Kupfer, Oren | Carry, Terri | Parsons, Julie | Apkon, Susan

Article Type: Other

Abstract: COVID-19, the respiratory and frequently systemic disease caused by the novel SARS-COV-2 virus, was first recognized in December 2019 and quickly spread to become a pandemic and world-wide public health emergency over the subsequent 3–4 months. While COVID-19 has a very low morbidity rate across approximately 80% of the population, it has a high morbidity and mortality rate in the remaining 20% of the population. 1 These numbers have put a significant strain on medical systems around the world. Patients with neuromuscular diseases such as those with Duchenne muscular dystrophy (DMD) and spinal muscular atrophy (SMA), tend …to be more medically fragile and have higher health care needs than the general population. Respiratory insufficiency, cardiac disease, obesity, and immunocompromised status due to chronic steroid treatments in certain patient populations with neuromuscular conditions are specific risk factors for severe COVID-19 disease. In general, the pediatric population has shown to be less severely impacted with lower infection rates and lower morbidity and mortality rates than the adult population, however, as expected, children with underlying medical conditions are at higher risk of morbidity from COVID-19 than their peers. 2 Many patients with neuromuscular disease also rely heavily on caregiver support through their lifetime and thus maintaining the health of their primary caregivers is also a significant consideration in the health and well-being of the patients. This paper will address routine and emergency medical care, rehabilitation services, and other considerations for the pediatric patient with a neuromuscular condition during the COVID-19 pandemic. Show more

Keywords: Duchenne muscular dystrophy and COVID-19, SARS-CoV-2 and muscular dystrophy, rehabilitation and COVID-19, spinal muscular atrophy and COVID-19, telehealth and muscular dystrophy, teletherapy

DOI: 10.3233/PRM-200768

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 405-414, 2020

Authors: Houtrow, Amy | Harris, Debbi | Molinero, Ashli | Levin-Decanini, Tal | Robichaud, Christopher

Article Type: Position Paper

Abstract: Children with disabilities are disproportionately impacted by COVID-19 and the containment response. Their caregivers must now adapt to increased stressors such as lack of access to needed therapies, medical supplies, and nursing care. Prior to COVID-19 these families were already marginalized, and this has only worsened during the pandemic. As a vulnerable population, children with disabilities have not been the focus of much discussion during the pandemic, likely because the disease disproportionately impacts older individuals. Nonetheless, children with disabilities should be a focus of evaluation and intervention to mitigate the negative consequences of COVID-19 and the resulting containment strategies. Their …needs should be included in future crisis planning, as well. In order to raise awareness of pediatric rehabilitation professionals, health care administrators, policy makers, and advocates, this manuscript provides a discussion of the following topics: the immediate and ongoing impacts on children with disabilities and their families, the ethical concerns and implications of triage protocols for scarce resources that consider disability in their scoring systems, and optimizing medical care and educational needs in the time of COVID. Show more

Keywords: Children with disabilities, COVID-19, health care inequities, Individualized Education Program, discrimination

DOI: 10.3233/PRM-200769

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 415-424, 2020

Authors: Brandenburg, Joline E. | Holman, Lainie K. | Apkon, Susan D. | Houtrow, Amy J. | Rinaldi, Robert | Sholas, Maurice G.

Article Type: Short Communication

Abstract: Over 80% of the children in the world have had their education impacted by COVID-19. For children with disabilities who receive special education services, access to in-person education and other resources at school is particularly important. The American Academy of Pediatrics advocates for students to attend school in person, without specifics for how children with disabilities can safely return to school. To appropriately plan and accommodate children with disabilities we must prioritize safety, allow for adherence to the Individuals with Disabilities Education Act, and preserve essential school staff. The less cumbersome default of confining students with disabilities to home is …not acceptable. We provide an outline describing why Individual Education Plans and 504 plans are important, how they are related to the COVID-19 pandemic, and recommendations for measures to help with safe return to school for children with disabilities. Show more

Keywords: Disability pediatric rehabilitation, children, school, education, COVID-19, health equity

DOI: 10.3233/PRM-200789

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 425-431, 2020

Authors: Avice, Thomas

Article Type: Case Report

Abstract: More than six months after the Shelter-in-Place executive order in the San Francisco Bay Area, this paper analyzes how an essential public works construction project put a COVID-19 safety protocol in place. It describes a four-step protocol, details challenges and successes of implementation, and provides insight for construction as well as other industries, including healthcare.

Keywords: COVID-19, safety protocols, construction, industry

DOI: 10.3233/PRM-200808

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 433-437, 2020

Authors: Kelly, Kiersten

Article Type: Other

DOI: 10.3233/PRM-200766

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 439-440, 2020

Article Type: Other

DOI: 10.3233/PRM-200023

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 441-448, 2020

Article Type: Other

DOI: 10.3233/PRM-200024

Citation: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 3, pp. 449-, 2020