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Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design

Höfers, Wiebke; Jørgensen, Vivien; Sällström, Susanne; Vege, Kristine M; Strøm, Mona; New, Peter W; Bushnik, Tamara; Zakharova, Olga; Krasovsky, Tal; Guttman, Dafna; Ghatasha, Atheer; Genlin, Liu; Yang, Chen; Yu-Xi, Qin; Wahman, Kerstin; Sunnerhagen, Katharina S; Ertzgaard, Per; Sukhov, Renat; Augutis, Marika; Stanghelle, Johan K; Roaldsen, Kirsti S
STUDY DESIGN/METHODS:International multicentre cross-sectional study. OBJECTIVES/OBJECTIVE:To describe the organisation and systems of paediatric spinal cord injury (SCI) rehabilitation services in seven countries and compare them with available recommendations and key features of paediatric SCI. SETTING/METHODS:Ten SCI rehabilitation units in seven countries admitting children and adolescents with SCI < 18 years of age. METHODS:An online survey reporting data from 2017. Descriptive and qualitative analysis were used to describe the data. RESULTS:The units reported large variations in catchment area, paediatric population and referrals, but similar challenges in discharge policy. Nine of the units were publicly funded. Three units had a paediatric SCI unit. The most frequent causes of traumatic injury were motor vehicle accidents, falls, and sports accidents. Unlike the other units, the Chinese units reported acrobatic dancing as a major cause. Mean length of stay in primary rehabilitation ranged between 18 and 203 days. Seven units offered life-long follow-up. There was a notable variation in staffing between the units; some of the teams were not optimal regarding the interdisciplinary and multiprofessional nature of the field. Eight units followed acknowledged standards and recommendations for specialised paediatric SCI rehabilitation and focused on family-centred care and rehabilitation as a dynamic process adapting to the child and the family. CONCLUSIONS:As anticipated, we found differences in the organisation and administration of rehabilitation services for paediatric SCI in the ten rehabilitation units in seven countries. This might indicate a need for internationally approved, evidence-based guidelines for specialised paediatric SCI rehabilitation.
PMID: 34802054
ISSN: 1476-5624
CID: 5063202

Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI)

Roaldsen, Kirsti Skavberg; Jrgensen, Vivien; Höfers, Wiebke; Sällström, Susanne; Augutis, Marika; Ertzgaard, Per; Wahman, Kerstin; Strm, Mona; Vege, Kristine Marie; Srland, Kristine; GenLin, Liu; Qi, Zhang; Yu-Xi, Qin; Yang, Chen; Zakharova, Olga; Trukhankina, Zinaida; Ghatashah, Atheer; Hamdan, Eman; Krasovsky, Tal; Guttman, Dafna; Sunnerhagen, Katharina Stibrant; New, Peter W; Bushnik, Tamara; Sukhov, Renat; Stanghelle, Johan K
PURPOSE/OBJECTIVE:Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS:A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with ≥20 adolescents aged 13-17 years at least 6 months' post rehabilitation. RESULTS:Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents' plans for the future. CONCLUSION/CONCLUSIONS:Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.
PMID: 34974443
ISSN: 1875-8894
CID: 5097812

Pediatric Rehabilitation Of Influenza B Associated Rhabdomyolysis: A Case Report [Meeting Abstract]

Brooks, Forrest; Zelinger, Perry; Tsai, William M; Sukhov, Renat
ISSN: 1537-7385
CID: 4942512

Using ICF-CY WHO principles to guide rehabilitation following sudden cardiac arrest in an adolescent with ALCAPA

Wang, Emily L; Sukhov, Renat
This case report details the complex rehabilitation of an adolescent patient with congenital heart disease with anomalous origin of the left coronary artery from the pulmonary artery (ALCAPA) who presented with a sudden cardiac arrest. The International Classification of Functioning, Disability and Health for Children and Youth, World Health Organization (ICF-CY WHO) principles were used to guide the course of the patient's acute inpatient rehabilitation.
PMID: 34057105
ISSN: 1875-8894
CID: 4898692

Rehabilitation of a child with complicated aneurysmal bone cyst

Asante, Afua; Pastorius, Daniel; Sukhov, Renat
An aneurysmal bone cyst (ABC) is a benign lesion often found in long bones. Almost one third of ABCs are secondary to primary tumors. When found in the spine, ABCs can cause insidious back pain and, in rare cases, neurological deficits. This case will discuss an adolescent female who acquired a non-traumatic spinal cord injury (NTSCI) as a result of complications from an aneurysmal bone cyst. Treatment consisted of surgical removal of the cyst, laminectomy, corpectomy, and fusion of the thoracic spine. Following surgical intervention, the child spent several weeks in an acute inpatient pediatric rehabilitation facility. Goal oriented outpatient services facilitated further recovery and led to near complete resolution of symptoms associated with non-traumatic spinal cord injury. Contemporary and clinically oriented child and family interventions are essential in successful rehabilitation of children with NTSCI as a result of ABCs.
PMID: 33427696
ISSN: 1875-8894
CID: 4762342

Hemipelvectomy in an Adolescent with Li-Faumeni Syndrome: A Case Report [Meeting Abstract]

Ishii, Haruki; Sukhov, Renat
ISSN: 1934-1563
CID: 5137422

Where have all the children gone? Reflections on a flowerless "COVID" spring

Sukhov, Renat; Gold, Joan; Asante, Afua; Dizon, Louise
PMID: 32333562
ISSN: 1875-8894
CID: 4427892

Telemedicine for pediatric physiatry: How social distancing can bring physicians and families closer together

Sukhov, Renat; Asante, Afua; Ilizarov, Gavriil
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.
PMID: 33104050
ISSN: 1875-8894
CID: 4645692

To screen or not to screen: A case report of atlantoaxial subluxation [Meeting Abstract]

Tenaglia, A L; Plavnik, K; Asante, A; Sukhov, R
Case Description: Nine-year-old female with Down syndrome presented with progressive functional deficits and was found to have atlantoaxial subluxation with severe cord compression and myelopathy.
Setting(s): Acute inpatient rehabilitation Patient: Nine-year-old female with Down syndrome presented with left sided weakness, sensory deficits, and difficulty walking for 3 months. Assessment/Results: Brain MRI revealed marked atlantoaxial subluxation with compression of the cord at the level of the odontoid process. She underwent bilateral sub-occipital craniectomy, C1 laminectomy and occipital-C4 fusion. She was admitted to acute inpatient rehabilitation to address her continued functional deficits.
Discussion(s): Atlantoaxial instability (AAI) refers to increased mobility of the axis on the atlas. It is more common in those with Down syndrome, affecting 10-20%. On lateral neck radiographs, a large anterior atlantoodontoid distance can indicate instability and in 1-2%, the displaced odontoid can compress the cord causing weakness, abnormal gait, or death. Recently updated guidelines from the American Academy of Pediatrics (AAP) no longer recommend screening radiographs for children with Down syndrome. The American Academy of PM&R continues to recommend radiographs for asymptomatic children at age three to five or prior to participation in contact sports. As specialists in musculoskeletal medicine and as advocates for inclusion and an active lifestyle, pediatric physiatrists should be aware of and appropriately screen for this pathology. As per AAP, plain radiographs do not adequately identify at-risk children. Indeed, a study reviewing adults with Down syndrome found a low correlation between radiological findings and symptoms of AAI. Conversely, two studies in children with Down syndrome evaluated enhanced neuroimaging techniques, one being the use of novel radiographical measurements and the second being the use of a dynamic MRI, the latter better distinguishing patients at risk for neurologic injury.
Conclusion(s): An interdisciplinary, evidence-based consensus regarding screening guidelines for atlantoaxial subluxation is needed to avoid potentially devastating neurological consequences of atlantoaxial subluxation
ISSN: 1934-1482
CID: 4454742

Nitrous oxide use leading to lower extremity paresthesias secondary to vitamin B12 deficiency: A case report [Meeting Abstract]

Plavnik, K; Asante, A; Sukhov, R; Tenaglia, A L
Case Description: The patient presented with ascending numbness and difficulty walking for 3 weeks. He denied any recent travel history or illness. He reported daily nitrous oxide inhalation via 'whippets' for the past 6 months. Neurological examination revealed reduced vibration and proprioception in bilateral lower extremities, an ataxic gait and bilateral foot drop. The remainder of the examination was normal.
Setting(s): Acute inpatient rehabilitation Patient: 17-year-old patient with numbness in bilateral feet for 3 weeks. Assessment/Results: Laboratory workup revealed an elevated methylmalonic acid level consistent with Vitamin B12 deficiency. EMG revealed moderate acute motor axonal polyneuropathy. An MRI of the spinal cord was refused by the patient. He was treated with intramuscular vitamin B12 replacement, followed by oral vitamin B12 for 3-6 months. He was admitted to acute inpatient rehabilitation where he received multidisciplinary treatment from physical therapy, occupational therapy, cognitive rehabilitation and psychological support. Patient was advised to discontinue nitrous oxide use and referred to an addiction counseling center. Upon discharge, patient ambulated with modified independence and bilateral ankle-foot orthoses due to foot drop.
Discussion(s): Nitrous oxide is an increasingly popular recreational drug used amongst young adults. The typical mode of inhalation involves small pressurized canisters of nitrous oxide in whipped cream dispensers. Nitrous oxide irreversibly inactivates vitamin B12, eventually leading to deficiency. Vitamin B12 depletion causes demyelination and gliosis within the dorsal cord of the spinal cord and peripheral nerves. In addition, cognitive impairment and optic atrophy may occur. The common neurological presentation of toxicity includes paresthesias and gait disturbance, which improve over time with high dose vitamin B12 replacement.
Conclusion(s): Nitrous oxide-induced vitamin B12 deficiency leading to neuropathy is a rare diagnosis seen in the acute rehabilitation setting that physiatrists should be able to recognize. Children and adults with neurological symptoms should have a thorough illicit drug history screen during history taking
ISSN: 1934-1482
CID: 4454842