ABSTRACT
INTRODUCTION: The Canadian Frostbite Collaborative project is exploring frostbite patient care needs and current practices in Canada to inform the development of a Canadian frostbite care network (CFCN) as a national quality improvement initiative. METHODS: Using a quantitative and qualitative approach, this study aimed to define the landscape of current frostbite practices, challenges, and interest in future work. RESULTS: Current frostbite care practices were initially assessed through semistructured phone interviews of Canadian healthcare providers. Canadian healthcare providers managing frostbite in a range of health disciplines and contexts then participated in focus group sessions discussing the potential roles and opportunities as well as potential challenges in developing a CFCN. Roles and opportunities for a network in advancing frostbite care included facilitating research, educating stakeholders, facilitating collaboration, standardizing care, and advocating for frostbite care. Challenges identified in frostbite care and network development included managing resources, navigating the Canadian healthcare system, overcoming low numbers, and communicating with policymakers and frontline providers. CONCLUSIONS: Formalizing a CFCN may provide important opportunities and support in overcoming critical barriers to providing high-quality frostbite care across Canada.
Subject(s)
Quality of Health Care , Humans , CanadaABSTRACT
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.