Testing Feasibility of a Mobile Application to Monitor Fatigue in People With Multiple Sclerosis.

BACKGROUND: Fatigue is a significant and burdensome symptom for patients with multiple sclerosis and is associated with other symptoms, signs, and decreased quality of life. METHODS: A prospective pilot study was conducted with a convenience sample (n = 34) of patients with relapsing-remitting multiple sclerosis using a phone application, FatigueApp.com, to collect data on patient-reported outcome measures (Patient-Reported Outcomes Measurement Information System [PROMIS]). RESULTS: FatigueApp feasibility was good, with the ability to collect data on self-reported fatigue and other symptoms using PROMIS measures. CONCLUSIONS: This study showed that using a phone application with PROMIS may be useful in the future to provide estimates of fatigue and other variables to facilitate clinical monitoring of fatigue for neurology clinic settings.

Development of Electronic Chemotherapy Roadmaps for Pediatric Oncology Patients.

A chemotherapy roadmap is a summary of the chemotherapy plan for a pediatric oncology patient. Chemotherapy roadmaps exist as paper documents for most, if not all, pediatric oncology programs. Paper chemotherapy roadmaps are associated with risks that can negatively affect the safety of the chemotherapy process. This institution explored the feasibility of converting paper chemotherapy roadmaps into an electronic form. The pediatric information systems team developed an innovative computer application that can generate electronic chemotherapy roadmaps, and the pediatric oncology program established a novel workflow that can operationalize them. Electronic chemotherapy roadmaps have been produced for 36 treatment protocols, and 369 electronic chemotherapy roadmaps have been used for 352 pediatric oncology patients. They have functioned as designed and have not had any unintended effects. In the 5 years after their implementation, the average proportion of patient safety events involving paper or electronic chemotherapy roadmaps decreased by 78.7%. This report is the first to demonstrate the feasibility of creating and implementing electronic chemotherapy roadmaps. Continued expansion of the current library will be necessary to formally test the hypothesis that electronic chemotherapy roadmaps can decrease the risks associated with their paper counterparts and increase the safety of the chemotherapy process.

Recommendations and Extraction of Clinical Variables of Pediatric Multiple Sclerosis Using Common Data Elements.

PURPOSE: The purpose of this article was to demonstrate the feasibility of using common data elements (CDEs) to search for information on the pediatric patient with multiple sclerosis (MS) and provide recommendations for future quality improvement and research in the use of CDEs for pediatric MS symptom management strategies Methods: The St. Louis Children's Hospital (SLCH), Washington University (WU) pediatrics data network was evaluated for use of CDEs identified from a database to identify variables in pediatric MS, including the key clinical features from the disease course of MS. The algorithms used were based on International Classification of Diseases, Ninth/Tenth Revision, codes and text keywords to identify pediatric patients with MS from a de-identified database. Data from a coordinating center of SLCH/WU pediatrics data network, which houses inpatient and outpatient records consisting of patients (N = 498 000), were identified, and detailed information regarding the clinical course of MS were located from the text of the medical records, including medications, presence of oligoclonal bands, year of diagnosis, and diagnosis code. RESULTS: There were 466 pediatric patients with MS, with a few also having the comorbid diagnosis of anxiety and depression. CONCLUSIONS: St. Louis Children's Hospital/WU pediatrics data network is one of the largest databases in the United States of detailed data, with the ability to query and validate clinical data for research on MS. Nurses and other healthcare professionals working with pediatric MS patients will benefit from having common disease identifiers for quality improvement, research, and practice. The increased knowledge of big data from SLCH/WU pediatrics data network has the potential to provide information for intervention and decision-making that can be personalized to the pediatric MS patient.