Making the Connection for Ehlers-Danlos Syndrome Patients Through Improved Knowledge and Screening at the Salt Lake City Veterans Administration Medical Center

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Identifier 2019_Lundquist
Title Making the Connection for Ehlers-Danlos Syndrome Patients Through Improved Knowledge and Screening at the Salt Lake City Veterans Administration Medical Center
Creator Lundquist, Margaret E.
Subject Advanced Practice Nursing; Education, Nursing, Graduate; Ehlers-Danlos Syndrome; Joint Instability; Nursing Diagnosis; Evidence-Based Practice; Health Knowledge, Attitudes, Practice; Diagnostic Screening Programs; Hospitals, Veterans; Surveys and Questionnaires; Quality Improvement
Description Problem Ehlers-Danlos Syndrome (EDS) is an underrecognized heritable connective tissue disorder (HCTD) that presents with joint hypermobility, hyperextensible skin, tissue fragility, and can also have widespread systemic manifestations. A knowledge gap among providers leads to lengthy delays in diagnosis and misdiagnosis leading to psychological and physical consequences for patients. This project aimed to educate providers on the presentation and evaluation of EDS in order to decrease the delay in diagnosis for patients. Methods An educational program was given to providers at the Veterans Administration Salt Lake City Healthcare System (VASLCHS) which included a presentation of the clinical features, evaluation, and a critical physical exam technique for assessing joint hypermobility called the "Beighton score." Change in knowledge was measured through three pretest-posttest knowledge-based questions on the presentation and evaluation of EDS. Change in confidence was measured through three Likert scale pretest-posttest questions on the presentation, evaluation and identification of resources for EDS. Participants included physicians (15.6%), nurse practitioners (31.3%), physicians' assistants (9.4%), registered nurses (21.9%), pharmacists (3.1%), and licensed practical nurses (18.8%). Key Findings Results showed a statistically significant improvement (p<0.05) in confidence and knowledge of the presentation and evaluation of EDS. Participant knowledge of presenting symptoms (pre-median:1, post-median:3, p=1.36 e-6), assessment (X2=21.989, df=1, p=2.742e--6), and a physical exam finding (X2=51.897, df=2, p=5.379e-12) improved. Measures of confidence in the presentation (pre-median=1, post-median=3, p=3.91e-6), evaluation (pre-median=1, post-median=3, p=1.18e-6), and identifying clinical resources for EDS (pre-median=1, post-median=4. p=3.19e-6) also improved. Most participants reported an intent to utilize the Beighton score and refer patients for evaluation by the Genomic Medicine Service. A tool was created for the electronic medical record which was utilized 11 times after the initial educational presentation, reflecting a willingness of participants to utilize the Beighton score. The project data were not able to demonstrate an increase in referrals or diagnosis of EDS, possibly related to a short follow-up period and the low prevalence of the condition. Conclusion This study proved effective in teaching providers about this underrecognized genetic disorder. Future studies should include an extended follow-up period to monitor knowledge use and impacts on patient outcomes. The Beighton score for joint hypermobility should be included in musculoskeletal assessment courses in order to identify patients with EDS and other HCTD that present with joint hypermobility.
Relation is Part of Graduate Nursing Project, Doctor of Nursing Practice, DNP
Publisher Spencer S. Eccles Health Sciences Library, University of Utah
Date 2019
Type Text
Rights
Holding Institution Spencer S. Eccles Health Sciences Library, University of Utah
Language eng
ARK ark:/87278/s6tx7xwr
Setname ehsl_gradnu
ID 1428518
Reference URL https://collections.lib.utah.edu/ark:/87278/s6tx7xwr
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