A Comprehensive Stroke Center Patient Registry: Advantages, Limitations, and Lessons Learned.
James E. Siegler1$, Amelia K. Boehme2,3$, Adrianne M. Dorsey1, Dominique J. Monlezun1, Alex J. George1, Amir Shaban4, H. Jeremy Bockholt5,6, Karen C. Albright2,3,7,8, Sheryl Martin-Schild4*.
Author Affiliations:
1Tulane University School of Medicine, New Orleans, LA, USA
2Department of Epidemiology, School of Public Health, University of Alabama at Birmingham, Birmingham, AL, USA
3Department of Neurology, School of Medicine, University of Alabama at Birmingham, Birmingham, AL, USA
4Stroke Program, Department of Neurology, Tulane University Hospital, New Orleans, LA, USA
5Advanced Biomedical Informatics Group, LLC, Iowa City, IA, USA
6Department of Psychiatry, University of Iowa, Iowa City, IA, USA
7Health Services and Outcomes Research Center for Outcome and Effectiveness Research and Education (COERE), University of Alabama at Birmingham, Birmingham, AL, USA
8Center of Excellence in Comparative Effectiveness Research for Eliminating Disparities (CERED), Minority Health & Health Disparities Research Center (MHRC), University of Alabama at Birmingham, Birmingham, AL, USA
$James E. Siegler and Amelia K. Boehme contributed equally to the production of this manuscript.
[button link=”http://msrj.chm.msu.edu/wp-content/uploads/2014/05/MSRJ-Spring-2013-A-comprehensive-stroke-center-patient-registry-advantages-limitations-and-lessons-learned.pdf” type=”icon” icon=”download” color=green] Full Text Article PDF [/button]
*Corresponding Author: Sheryl Martin-Schild; smartin2[at]tulane.edu
Key Words: Stroke; Registries; Methodology; Epidemiological Methods; Common Data Elements; Source Data Verification.
Abstract:
There has been a trend to portray doctors as “all” - all knowing, all thinking, all seeing, all doing. We’re all brains, learning and memorizing, and all hands, cutting and suturing. Doctors can be any or none of these things, but sometimes we miss our greatest strength: we can be all Heart. And by being all Heart, we must be careful how our experiences affect us.
Published: May 31, 2013
Senior Editor: Kevin C. Patterson
Junior Editor: Jessica L. Wummel
DOI: Pending
Citation:
Siegler JE, Boehme AK, Dorsey AM, Monlezun DJ, George AJ, Shaban A, Bockckholt HJ, Albright KC, Martin-Schild S. A Comprehensive Stroke Center Patient Registry: Advantages, Limitations, and Lessons Learned. Medical Student Research Journal. 2013;2(Spring):21-29.
References:
1. Kunitz SC, Gross CR, Heyman A, et al. The pilot stroke data bank: definition, design, and data. Stroke. 1984; 15:740-6. http://dx.doi.org/10.1161/01.STR.15.4.740.
2. Mohr JP, Caplan LR, Melski JW, et al. The harvard cooperative stroke registry: a prospective registry. Neurology. 1978; 28(8):754-62. http://dx.doi.org/10.1212/WNL.28.8.754.
3. Rosati RA, McNeer JF, Starmer CF, Mittler BS, Morris JJ, Jr., Wallace AG. A new information system for medical practice. Arch Intern Med. 1975; 135(8):1017-24. http://dx.doi.org/10.1001/archinte.1975.00330080019003.
4. Ding D, Lu CZ, Fu JH, Hong Z. Predictors of vascular events after ischemic stroke: the China ischemic stroke registry study. Neuroepidemiology. 2010; 34:110-16. http://dx.doi.org/10.1159/000268823.
5. Turin TC, Kita Y, Rumana N, et al. Diurnal variation in onset of hemorrhagic stroke is independent of risk factor status: Takashima stroke registry. Neuroepidemiology. 2010; 34:25-33. http://dx.doi.org/10.1159/000255463.
6. Schwamm LH, Fonarow GC, Reeves MJ, et al. Get with the guidelines-stroke is associated with sustained improvement in care for patients hospitalized with acute stroke or transient ischemic attack. Circulation. 2009; 119:107-15. http://dx.doi.org/10.1161/CIRCULATIONAHA.108.783688.
7. LaBresh KA. Quality of acute stroke care improvement framework for the paul coverdell national acute stroke registry: facilitating policy and system change at the hospital level. Am J Prev Med. 2006; 31(6):S246-50. http://dx.doi.org/10.1016/j.amepre.2006.08.012.
8. George MG, Tong X, McGruder H, et al. Paul coverdell national acute stroke registry surveillance – four states. 2005-2007. MMWR Surveill Summ. 2009; 58(SS07):1-23. http://origin.glb.cdc.gov/mmwr/preview/mmwrhtml/ss5807a1.htm.
9. Jakobsen E, Palshof T, Osterlind K, Pilegaard H. Data from a national lung cancer registry contributes to improve outcome and quality of surgery: Danish results. Eur J Cardiothorac Surg. 2009; 35(2):348-52. http://dx.doi.org/10.1016/j.ejcts.2008.09.026.
10. Larsson S, Lawyer P, Garellick G, Lindahl B, Lundstrom M. Use of 13 disease registries in 5 countries demonstrates the potential to use outcome data to improve health care’s value. Health Aff. 2012; 31(1):220-7. http://dx.doi.org/10.1377/hlthaff.2011.0762.
11. Maas AI. Traumatic brain injury: simple data collection will improve the outcome. Wien Klin Wochenschr. 2007; 119(1-2):20-2. http://dx.doi.org/10.1007/s00508-006-0759-y.
12. Xian Y, Fonarow GC, Reeves MJ, et al. Data quality in the American Heart Association get with the guidelines-stroke (gwtg-stroke): results from a national data validation audit. Am Heart J. 2012; 163(3): 392-8,e1. http://dx.doi.org/10.1016/j.ahj.2011.12.012.
13. Yoon SS, George MG, Myers S, et al. Analysis of data-collection methods for an acute stroke care registry. Am J Prev Med. 2006; 31(6):S196-201. http://dx.doi.org/10.1016/j.amepre.2006.08.010.
14. Braunschweig CA. Creating a clinical nutrition registry: prospects, problems, and preliminary results. J Am Diet Assoc. 1999; 99(4):467-70. http://dx.doi.org/10.1016/S0002-8223(99)00115-7.
15. Arts DG, De Keizer NF, Scheffer GJ. Defining and improving data quality in medical registries: a literature review, case study, and generic framework. J Am Med Inform Assoc. 2002; 9(6):600-11. http://dx.doi.org/10.1197/jamia.M1087.
16. Siegler JE, Martin-Schild S. Early neurological deterioration (end) after stroke: the end depends on the definition. Int J Stroke. 2011; 6(3):211-2. http://dx.doi.org/10.1111/j.1747-4949.2011.00596.x.
17. Albright KC, Martin-Schild S, Bockholt HJ, et al. No consensus on definition criteria for stroke registry common data elements. Cerebrovasc Dis Extra. 2011; 1(1):84-92. http://dx.doi.org/10.1159/000334146.
18. Davis FG, Bruner JM, Surawicz TS. The rationale for standardized registration and reporting of brain and central nervous system tumors in population-based cancer registries. Neuroepidemiology. 1997; 16(6):308-16. http://dx.doi.org/10.1159/000109703.
19. Leung LY, Albright KC, Boehme AK, et al. Short-term bleeding events observed with clopidogrel loading in acute ischemic stroke patients. J Stroke Cerebrovasc Dis. 2013; 22(7):1184-9. http://dx.doi.org/10.1016/j.jstrokecerebrovasdis.2013.03.001.
20. Siegler JE, Boehme AK, Albright KC, Martin-Schild S. Ethnic disparities trump other risk factors in determining delay to emergency department arrival in acute ischemic stroke. Ethn Dis. 2013; 23(1):29-34. http://www.ncbi.nlm.nih.gov/pubmed/23495619.
21.Siegler JE, Boehme AK, Kumar AD, et al. Identification of modifiable and nonmodifiable risk factors for neurologic deterioration after acute ischemic stroke. J Stroke Cerebrovasc Dis. 2012; 22(7):e207-13. http://dx.doi.org/10.1016/j.jstrokecerebrovasdis.2012.11.006.
22. Kumar AD, Boehme AK, Siegler JE, Gillette M, Albright KC, Martin-Schild S. Leukocytosis in patients with neurologic deterioration after acute ischemic stroke is
associated with poor outcomes. J Stroke Cerebrovasc Dis. 2012; 22(7):e111-7. http://dx.doi.org/10.1016/j.jstrokecerebrovasdis.2012.08.008.
23. Saver JL, Warach S, Janis S, et al. Standardizing the structure of stoke clinical and epidemiological research data: the National Institute of Neurological Disorders and Stroke (NINDS) Stroke Common Data Element (CDE) project. Stroke. 2012; 43:967-73. http://dx.doi.org/10.1161/STROKEAHA.111.634352.
24. van Swieten JC, Koudstaal PJ, Visser MC, Schouten HJ, van Gijn J. Interobserver agreement for the assessment of handicap in stroke patients. Stroke. 1988;19:604-7. http://dx.doi.org/10.1161/01.STR.19.5.604.
25. Drolet BC, Johnson KB. Categorizing the world of registries. J Biomed Inform. 2008; 41(6):1009-20. http://dx.doi.org/10.1016/j.jbi.2008.01.009.
26. Bufalino VJ, Masoudi FA, Stranne SK, et al. The American Heart Association’s recommendations for expanding the applications of existing and future clinical registries: a policy statement from the American Heart Association. Circulation. 2011; 123:2167-79. http://dx.doi.org/10.1161/CIR.0b013e3182181529.
27. Jones EM, Albright KC, Fossati-Bellani M, Siegler JE, Martin-Schild S. Emergency department shift change is associated with pneumonia in patients with acute ischemic stroke. Stroke. 2011; 42:3226-30. http://dx.doi.org/10.1161/STROKEAHA.110.613026.
28. Johnson CM, Nahm M, Shaw RJ, et al. Can prospective usability evaluation predict data errors? AMIA Annu Symp Proc. 2010; 2010:346-50. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3041437/?report=classic.
29. Reeves MJ, Mullard AJ, Wehner S. Inter-rater reliability of data elements from a prototype of the paul coverdell national acute stroke registry. BMC Neurol. 2008; 8:19. http://dx.doi.org/10.1186/1471-2377-8-19.
30. Paulsen A, Overgaard S, Lauritsen JM. Quality of Data Entry Using Single Entry, Double Entry and Automated Forms Processing–An Example Based on a Study of Patient-Reported Outcomes. PloS One. 2012; 7(4):e35087. http://dx.doi.org/10.1371/journal.pone.0035087.
31. Day S, Fayers P, Harvey D. Double data entry: what value, what price? Control Clin Trials. 1998; 19(1):15-24. http://dx.doi.org/10.1016/S0197-2456(97)00096-2.
32. Howard G. Why do we have a stroke belt in the southeastern united states? A review of unlikely and uninvestigated potential causes. Am J Med Sci. 1999; 317(3):160-7. http://journals.lww.com/amjmedsci/pages/articleviewer.aspx?year=1999&issue=03000&article=00005&type=abstract.
33. Lyden P, Raman R, Liu L, et al. NIHSS training and certification using a new digital video disk is reliable. Stroke. 2005; 36:2446-9. http://dx.doi.org/10.1161/01.STR.0000185725.42768.92.
34. Towfighi A, Saver JL. Stroke declines from third to fourth leading cause of death in the United States: historical perspective and challenges ahead. Stroke. 2012; 42:2351-5. http://dx.doi.org/10.1161/STROKEAHA.111.621904.
35. Hsieh FI, Lien LM, Chen ST, et al. Get with the guidelines-stroke performance indicators: surveillance of stroke care in the Taiwan stroke registry: get with the guidelines-stroke in Taiwan. Circulation. 2010; 122:1116-23. http://dx.doi.org/10.1161/CIRCULATIONAHA.110.936526.
36. California Acute Stroke Pilot Registry Investigators. The impact of standardized stroke orders on adherence to best practices. Neurology. 2005; 65(3):360-5. http://dx.doi.org/10.1212/01.wnl.0000171706.68756.b7.
37. Centers for Disease Control and Prevention (CDC). Use of a registry to improve acute stroke care-seven states, 2005-2009. MMWR. 2011; 60(07):206-10. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6007a2.htm.