Notes

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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.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.
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.

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.

There were 54 malesiated 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.
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.
Although the Canadian Occupational Performance Measure (COPM) is used with children, it is unclear how they and their parents experience this. This study aims to investigate the opinions of children and their parents about the COPM when it is used with children.

Semi-structured interviews were performed with 23 children varying in age between 8 and 18 years. The transcripts of the interviews were analysed using MAXQDA software to discover overarching themes. Parents' responses to an eight-item multiple-choice questionnaire were analysed using SPSS software.

Five themes extracted from the interviews with the children show My way of doing the COPM; The COPM shows my own problems and wishes for change; The COPM is important for identifying the support I need; The influence of my parents and my therapist; and The COPM is suitable for me. The children experienced the COPM as a valuable tool for determining and measuring the impact of an intervention. The parents experienced the COPM as suitable for their child and judged that the child's scores were useful for showing the outcome of an intervention.

Both the children and their parents valued the COPM as an outcome measure for intervention.
Both the children and their parents valued the COPM as an outcome measure for intervention.
Umbilical venous catheters (UVC) and peripherally inserted central catheters (PICC) are commonly used in preterms. UVC is cheap, easy to insert but has shorter dwell time. UVC is replaced after 7 days due to the risk of complications. This is associated with increased cost, work, and risk of nosocomial infections. The aim of this study was to determine the antenatal and postnatal factors that predict the need for a central line for more than 7 days, thus helping select between UVC or PICC on day 1 of life in babies ≤1500 grams.

We retrospectively collected antenatal and postnatal data of VLBW neonates over a period of 1 year who needed CL during their NICU stay. We then divided them into two cohorts. Group 1 CL ≤7 days. Group 2 CL > 7 days.

Sepsis and catheter complications were lower with use of a single CL or duration being ≤7 days. Birth weight, incomplete/no antenatal steroids, need for resuscitation, low Apgar's, RDS, hs-PDA, and initiation of feeds beyond 24 hours of birth were significant. Heparan in vivo The score was devised based on factors found significant that had an acceptable AUC of 0.
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