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The Multiple Sclerosis Surveillance Registry: A Novel Interactive Database Within the Veterans Health Administration (FULL)
The VA MS Surveillance Registry combines a traditional MS registry with individual clinical and utilization data within the largest integrated health system in the US.
A number of large registries exist for multiple sclerosis (MS) in North America and Europe. The Scandinavian countries have some of the longest running and integrated MS registries to date. The Danish MS Registry was initiated in 1948 and has been consistently maintained to track MS epidemiologic trends.2 Similar databases exist in Swedenand Norway that were created in the later 20th century.3,4 The Rochester Epidemiology Project, launched by Len Kurland at the Mayo Clinic, has tracked the morbidity of MS and many other conditions in Olmsted county Minnesota for > 60 years.5
The Canadian provinces of British Columbia, Ontario, and Manitoba also have long standing MS registries.6-8 Other North American MS registries have gathered state-wide cases, such as the New York State MS Consortium.9 Some registries have gathered a population-based sample throughout the US, such as the Sonya Slifka MS Study.10 The North American Research Consortium on MS (NARCOMS) registry is a patient-driven registry within the US that has enrolled > 30,000 cases.11 The MSBase is the largest online registry to date utilizing data from several countries.12 The MS Bioscreen, based at the University of California San Francisco, is a recent effort to create a longitudinal clinical dataset.13 This electronic registry integrates clinical disease morbidity scales, neuroimaging, genetics and laboratory data for individual patients with the goal of providing predictive tools.
The US military provides a unique population to study MS and has the oldest and largest nation-wide MS cohort in existence starting with World War I service members and continuing through the recent Gulf War Era.14 With the advent of EHRs in the US Department of Veterans Affairs (VA) Veterans Health Administration (VHA) in the mid-1990s and large clinical databases, the possibility of an integrated registry for chronic conditions was created. In this report, we describe the creation of the VA MS Surveillance Registry (MSSR) and the initial roll out to several VA medical centers within the MS Center of Excellence (MSCoE). The MSSR is a unique platform with potential for improving MS patient care and clinical research.
Methods
The MSSR was designed by MSCoE health care providers in conjunction with IT specialists from the VA Northwest Innovation Center. Between 2012 and 2013, the team developed and tested a core template for data entry and refined an efficient data dashboard display to optimize clinical decisions. IT programmers created data entry templates that were tested by 4 to 5 clinicians who provided feedback in biweekly meetings. Technical problems were addressed and enhancements added and the trial process was repeated.
After creation of the prototype MS Assessment Tool (MSAT) data entry template that fed into the prototype MSSR, our team received a grant in 2013 for national development and sustainment. The MSSR was established on the VA Converged Registries Solution (CRS) platform, which is a hardware and software architecture designed to host individual clinical registries and eliminate duplicative development effort while maximizing the ability to create new patient registries. The common platform includes a relational database, Health Level 7 messaging, software classes, security modules, extraction services, and other components. The CR obtains data from the VA Corporate Data Warehouse (CDW), directly from the Veterans Health Information Systems and Technology Architecture (VISTA) and via direct user input using MSAT.
From 2016 to 2019, data from patients with MS followed in several VA MS regional programs were inputted into MSSR. A roll-out process to start patient data entry at VA medical centers began in 2017 that included an orientation, technical support, and quality assurance review. Twelve sites from Veteran Integrated Service Network (VISN) 5 (mid-Atlantic) and VISN 20 (Pacific Northwest) were included in the initial roll-out.
Results
After a live or remote telehealth or telephone visit, a clinician can access MSAT from the Computerized Patient Record System (CPRS) or directly from the MSSR online portal (Figure 1). The tool uses radio buttons and pull-down menus and takes about 5 to 15 minutes to complete with a list of required variables. Data is auto-saved for efficiency, and the key variables that are collected in MSAT are noted in Table 1. The MSAT subsequently creates a text integration utility progress note with health factors that is processed through an integration engine and eventually transmitted to VISTA and becomes part of the EHR and available to all health care providers involved in that patient’s care. Additionally, data from VA outpatient and inpatient utilization files, pharmacy, prosthetics, laboratory, and radiology databases are included in the CDW and are included in MSSR. With data from 1998 to the present, the MSAT and CDW databases can provide longitudinal data analysis.
Between 18,000 and 20,000 patients with MS are evaluated in the VHA annually, and 56,000 unique patients have been assessed since 1998. From 2016 to 2019, 1,743 patients with MS or related disorders were enrolled in MSSR (Table 2 and Figure 2). The mean (SD) age of patients was 56.0 (12.9) years and the male:female ratio was 2.7. Racial minorities make up 40% of the cohort. Among those with definite and possible MS, the mean disease duration was 22.7 years and the mean (SD) European Database for MS disability score was 4.7 (2.4) (Table 3). Three-quarters of the MSSR cohort have used ≥ 1 MS disease modifying therapy and 65% were classified as relapsing-remitting MS. An electronic dashboard was developed for health care providers to easily access demographic and clinical data for individuals and groups of patients (Figure 3). Standard and ad hoc reports can be generated from the MSSR. Larger longitudinal analyses can be performed with MSAT and clinical data from CDW. Data on comorbid conditions, pharmacy, radiology and prosthetics utilization, outpatient clinic and inpatient admission can be accessed for each patient or a group of patients.
In 2015, MSCoE published a larger national survey of the VA MS population.15 This study revealed that the majority of clinical features and demographics of the MSSR were not significantly different from other major US MS registries including the North American Research Committee on MS, the New York State MS Consortium, and the Sonya Slifka Study.16-18
Discussion
The MSSR is novel in that it combines a traditional MS registry with individual clinical and utilization data within the largest integrated health system in the US. This new registry leverages the existing databases related to cost of care, utilization, and pharmacy services to provide surveillance tools for longitudinal follow-up of the MS population within the VHA. Because the structure of the MSAT and MSSR were developed in a partnership between IT developers and clinicians, there has been mutual buy-in for those who use it and maintain it. This registry can be a test bed for standardized patient outcomes including the recently released MS Quality measures from the American Academy of Neurology.19
To achieve greater numbers across populations, there has been efforts in Europe to combine registries into a common European Register for MS. A recent survey found that although many European registries were heterogeneous, it would be possible to have a minimum common data set for limited epidemiologic studies.20 Still many registries do not have environmental or genetic data to evaluate etiologic questions.21 Additionally, most registries are not set up to evaluate cost or quality of care within a health care system.
Recommendations for maximizing the impact of existing MS registries were recently released by a panel of MS clinicians and researchers.22 The first recommendation was to create a broad network of registries that would communicate and collaborate. This group of MS registries would have strategic oversight and direction that would greatly streamline and leverage existing and future efforts. Second, registries should standardize data collection and management thereby enhancing the ability to share data and perform meta-analyses with aggregated data. Third, the collection of physician- and patient-reported outcomes should be encouraged to provide a more complete picture of MS. Finally, registries should prioritize research questions and utilize new technologies for data collection. These recommendations would help to coordinate existing registries and accelerate knowledge discovery.
The MSSR will contribute to the growing registry network of data. The MSSR can address questions about clinical outcomes, cost, quality with a growing data repository and linked biobank. Based on the CR platform, the MSSR allows for integration with other VA clinical registries, including registries for traumatic brain injuries, oncology, HIV, hepatitis C virus, and eye injuries. Identifying case outcomes related to other registries is optimized with the CR common structure.
Conclusion
The MSSR has been a useful tool for clinicians managing individual patients and their regional referral populations with real-time access to clinical and utilization data. It will also be a useful research tool in tracking epidemiological trends for the military population. The MSSR has enhanced clinical management of MS and serves as a national source for clinical outcomes.
1. Flachenecker P. Multiple sclerosis databases: present and future. Eur Neurol. 2014;72(suppl 1):29-31.
2. Koch-Henriksen N, Magyari M, Laursen B. Registers of multiple sclerosis in Denmark. Acta Neurol Scand. 2015;132(199):4-10.
3. Alping P, Piehl F, Langer-Gould A, Frisell T; COMBAT-MS Study Group. Validation of the Swedish Multiple Sclerosis Register: further improving a resource for pharmacoepidemiologic evaluations. Epidemiology. 2019;30(2):230-233.
4. Benjaminsen E, Myhr KM, Grytten N, Alstadhaug KB. Validation of the multiple sclerosis diagnosis in the Norwegian Patient Registry. Brain Behav. 2019;9(11):e01422.
5. Rocca WA, Yawn BP, St Sauver JL, Grossardt BR, Melton LJ 3rd. History of the Rochester Epidemiology Project: half a century of medical records linkage in a US population. Mayo Clin Proc. 2012;87(12):1202-1213.
6. Kingwell E, Zhu F, Marrie RA, et al. High incidence and increasing prevalence of multiple sclerosis in British Columbia, Canada: findings from over two decades (1991-2010). J Neurol. 2015;262(10):2352-2363.
7. Scalfari A, Neuhaus A, Degenhardt A, et al. The natural history of multiple sclerosis: a geographically based study 10: relapses and long-term disability. Brain. 2010;133(Pt 7):1914-1929.
8. Mahmud SM, Bozat-Emre S, Mostaço-Guidolin LC, Marrie RA. Registry cohort study to determine risk for multiple sclerosis after vaccination for pandemic influenza A(H1N1) with Arepanrix, Manitoba, Canada. Emerg Infect Dis. 2018;24(7):1267-1274.
9. Kister I, Chamot E, Bacon JH, Cutter G, Herbert J; New York State Multiple Sclerosis Consortium. Trend for decreasing Multiple Sclerosis Severity Scores (MSSS) with increasing calendar year of enrollment into the New York State Multiple Sclerosis Consortium. Mult Scler. 2011;17(6):725-733.
10. Minden SL, Frankel D, Hadden L, Perloffp J, Srinath KP, Hoaglin DC. The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics. Mult Scler. 2006;12(1):24-38.
11. Fox RJ, Salter A, Alster JM, et al. Risk tolerance to MS therapies: survey results from the NARCOMS registry. Mult Scler Relat Disord. 2015;4(3):241-249.
12. Kalincik T, Butzkueven H. The MSBase registry: Informing clinical practice. Mult Scler. 2019;25(14):1828-1834.
13. Gourraud PA, Henry RG, Cree BA, et al. Precision medicine in chronic disease management: the multiple sclerosis BioScreen. Ann Neurol. 2014;76(5):633-642.
14. Wallin MT, Culpepper WJ, Coffman P, et al. The Gulf War era multiple sclerosis cohort: age and incidence rates by race, sex and service. Brain. 2012;135(Pt 6):1778-1785.
15. Culpepper WJ, Wallin MT, Magder LS, et al. VHA Multiple Sclerosis Surveillance Registry and its similarities to other contemporary multiple sclerosis cohorts. J Rehabil Res Dev. 2015;52(3):263-272.
16. Salter A, Stahmann A, Ellenberger D, et al. Data harmonization for collaborative research among MS registries: a case study in employment [published online ahead of print, 2020 Mar 12]. Mult Scler. 2020;1352458520910499.
17. Vaughn CB, Kavak KS, Dwyer MG, et al. Fatigue at enrollment predicts EDSS worsening in the New York State Multiple Sclerosis Consortium. Mult Scler. 2020;26(1):99-108.
18. Minden SL, Kinkel RP, Machado HT, et al. Use and cost of disease-modifying therapies by Sonya Slifka Study participants: has anything really changed since 2000 and 2009? Mult Scler J Exp Transl Clin. 2019;5(1):2055217318820888.
19. Rae-Grant A, Bennett A, Sanders AE, Phipps M, Cheng E, Bever C. Quality improvement in neurology: multiple sclerosis quality measures: Executive summary [published correction appears in Neurology. 2016;86(15):1465]. Neurology. 2015;85(21):1904-1908.
20. Flachenecker P, Buckow K, Pugliatti M, et al; EUReMS Consortium. Multiple sclerosis registries in Europe - results of a systematic survey. Mult Scler. 2014;20(11):1523-1532.
21. Traboulsee A, McMullen K. How useful are MS registries?. Mult Scler. 2014;20(11):1423-1424.
22. Bebo BF Jr, Fox RJ, Lee K, Utz U, Thompson AJ. Landscape of MS patient cohorts and registries: Recommendations for maximizing impact. Mult Scler. 2018;24(5):579-586.
The VA MS Surveillance Registry combines a traditional MS registry with individual clinical and utilization data within the largest integrated health system in the US.
The VA MS Surveillance Registry combines a traditional MS registry with individual clinical and utilization data within the largest integrated health system in the US.
A number of large registries exist for multiple sclerosis (MS) in North America and Europe. The Scandinavian countries have some of the longest running and integrated MS registries to date. The Danish MS Registry was initiated in 1948 and has been consistently maintained to track MS epidemiologic trends.2 Similar databases exist in Swedenand Norway that were created in the later 20th century.3,4 The Rochester Epidemiology Project, launched by Len Kurland at the Mayo Clinic, has tracked the morbidity of MS and many other conditions in Olmsted county Minnesota for > 60 years.5
The Canadian provinces of British Columbia, Ontario, and Manitoba also have long standing MS registries.6-8 Other North American MS registries have gathered state-wide cases, such as the New York State MS Consortium.9 Some registries have gathered a population-based sample throughout the US, such as the Sonya Slifka MS Study.10 The North American Research Consortium on MS (NARCOMS) registry is a patient-driven registry within the US that has enrolled > 30,000 cases.11 The MSBase is the largest online registry to date utilizing data from several countries.12 The MS Bioscreen, based at the University of California San Francisco, is a recent effort to create a longitudinal clinical dataset.13 This electronic registry integrates clinical disease morbidity scales, neuroimaging, genetics and laboratory data for individual patients with the goal of providing predictive tools.
The US military provides a unique population to study MS and has the oldest and largest nation-wide MS cohort in existence starting with World War I service members and continuing through the recent Gulf War Era.14 With the advent of EHRs in the US Department of Veterans Affairs (VA) Veterans Health Administration (VHA) in the mid-1990s and large clinical databases, the possibility of an integrated registry for chronic conditions was created. In this report, we describe the creation of the VA MS Surveillance Registry (MSSR) and the initial roll out to several VA medical centers within the MS Center of Excellence (MSCoE). The MSSR is a unique platform with potential for improving MS patient care and clinical research.
Methods
The MSSR was designed by MSCoE health care providers in conjunction with IT specialists from the VA Northwest Innovation Center. Between 2012 and 2013, the team developed and tested a core template for data entry and refined an efficient data dashboard display to optimize clinical decisions. IT programmers created data entry templates that were tested by 4 to 5 clinicians who provided feedback in biweekly meetings. Technical problems were addressed and enhancements added and the trial process was repeated.
After creation of the prototype MS Assessment Tool (MSAT) data entry template that fed into the prototype MSSR, our team received a grant in 2013 for national development and sustainment. The MSSR was established on the VA Converged Registries Solution (CRS) platform, which is a hardware and software architecture designed to host individual clinical registries and eliminate duplicative development effort while maximizing the ability to create new patient registries. The common platform includes a relational database, Health Level 7 messaging, software classes, security modules, extraction services, and other components. The CR obtains data from the VA Corporate Data Warehouse (CDW), directly from the Veterans Health Information Systems and Technology Architecture (VISTA) and via direct user input using MSAT.
From 2016 to 2019, data from patients with MS followed in several VA MS regional programs were inputted into MSSR. A roll-out process to start patient data entry at VA medical centers began in 2017 that included an orientation, technical support, and quality assurance review. Twelve sites from Veteran Integrated Service Network (VISN) 5 (mid-Atlantic) and VISN 20 (Pacific Northwest) were included in the initial roll-out.
Results
After a live or remote telehealth or telephone visit, a clinician can access MSAT from the Computerized Patient Record System (CPRS) or directly from the MSSR online portal (Figure 1). The tool uses radio buttons and pull-down menus and takes about 5 to 15 minutes to complete with a list of required variables. Data is auto-saved for efficiency, and the key variables that are collected in MSAT are noted in Table 1. The MSAT subsequently creates a text integration utility progress note with health factors that is processed through an integration engine and eventually transmitted to VISTA and becomes part of the EHR and available to all health care providers involved in that patient’s care. Additionally, data from VA outpatient and inpatient utilization files, pharmacy, prosthetics, laboratory, and radiology databases are included in the CDW and are included in MSSR. With data from 1998 to the present, the MSAT and CDW databases can provide longitudinal data analysis.
Between 18,000 and 20,000 patients with MS are evaluated in the VHA annually, and 56,000 unique patients have been assessed since 1998. From 2016 to 2019, 1,743 patients with MS or related disorders were enrolled in MSSR (Table 2 and Figure 2). The mean (SD) age of patients was 56.0 (12.9) years and the male:female ratio was 2.7. Racial minorities make up 40% of the cohort. Among those with definite and possible MS, the mean disease duration was 22.7 years and the mean (SD) European Database for MS disability score was 4.7 (2.4) (Table 3). Three-quarters of the MSSR cohort have used ≥ 1 MS disease modifying therapy and 65% were classified as relapsing-remitting MS. An electronic dashboard was developed for health care providers to easily access demographic and clinical data for individuals and groups of patients (Figure 3). Standard and ad hoc reports can be generated from the MSSR. Larger longitudinal analyses can be performed with MSAT and clinical data from CDW. Data on comorbid conditions, pharmacy, radiology and prosthetics utilization, outpatient clinic and inpatient admission can be accessed for each patient or a group of patients.
In 2015, MSCoE published a larger national survey of the VA MS population.15 This study revealed that the majority of clinical features and demographics of the MSSR were not significantly different from other major US MS registries including the North American Research Committee on MS, the New York State MS Consortium, and the Sonya Slifka Study.16-18
Discussion
The MSSR is novel in that it combines a traditional MS registry with individual clinical and utilization data within the largest integrated health system in the US. This new registry leverages the existing databases related to cost of care, utilization, and pharmacy services to provide surveillance tools for longitudinal follow-up of the MS population within the VHA. Because the structure of the MSAT and MSSR were developed in a partnership between IT developers and clinicians, there has been mutual buy-in for those who use it and maintain it. This registry can be a test bed for standardized patient outcomes including the recently released MS Quality measures from the American Academy of Neurology.19
To achieve greater numbers across populations, there has been efforts in Europe to combine registries into a common European Register for MS. A recent survey found that although many European registries were heterogeneous, it would be possible to have a minimum common data set for limited epidemiologic studies.20 Still many registries do not have environmental or genetic data to evaluate etiologic questions.21 Additionally, most registries are not set up to evaluate cost or quality of care within a health care system.
Recommendations for maximizing the impact of existing MS registries were recently released by a panel of MS clinicians and researchers.22 The first recommendation was to create a broad network of registries that would communicate and collaborate. This group of MS registries would have strategic oversight and direction that would greatly streamline and leverage existing and future efforts. Second, registries should standardize data collection and management thereby enhancing the ability to share data and perform meta-analyses with aggregated data. Third, the collection of physician- and patient-reported outcomes should be encouraged to provide a more complete picture of MS. Finally, registries should prioritize research questions and utilize new technologies for data collection. These recommendations would help to coordinate existing registries and accelerate knowledge discovery.
The MSSR will contribute to the growing registry network of data. The MSSR can address questions about clinical outcomes, cost, quality with a growing data repository and linked biobank. Based on the CR platform, the MSSR allows for integration with other VA clinical registries, including registries for traumatic brain injuries, oncology, HIV, hepatitis C virus, and eye injuries. Identifying case outcomes related to other registries is optimized with the CR common structure.
Conclusion
The MSSR has been a useful tool for clinicians managing individual patients and their regional referral populations with real-time access to clinical and utilization data. It will also be a useful research tool in tracking epidemiological trends for the military population. The MSSR has enhanced clinical management of MS and serves as a national source for clinical outcomes.
A number of large registries exist for multiple sclerosis (MS) in North America and Europe. The Scandinavian countries have some of the longest running and integrated MS registries to date. The Danish MS Registry was initiated in 1948 and has been consistently maintained to track MS epidemiologic trends.2 Similar databases exist in Swedenand Norway that were created in the later 20th century.3,4 The Rochester Epidemiology Project, launched by Len Kurland at the Mayo Clinic, has tracked the morbidity of MS and many other conditions in Olmsted county Minnesota for > 60 years.5
The Canadian provinces of British Columbia, Ontario, and Manitoba also have long standing MS registries.6-8 Other North American MS registries have gathered state-wide cases, such as the New York State MS Consortium.9 Some registries have gathered a population-based sample throughout the US, such as the Sonya Slifka MS Study.10 The North American Research Consortium on MS (NARCOMS) registry is a patient-driven registry within the US that has enrolled > 30,000 cases.11 The MSBase is the largest online registry to date utilizing data from several countries.12 The MS Bioscreen, based at the University of California San Francisco, is a recent effort to create a longitudinal clinical dataset.13 This electronic registry integrates clinical disease morbidity scales, neuroimaging, genetics and laboratory data for individual patients with the goal of providing predictive tools.
The US military provides a unique population to study MS and has the oldest and largest nation-wide MS cohort in existence starting with World War I service members and continuing through the recent Gulf War Era.14 With the advent of EHRs in the US Department of Veterans Affairs (VA) Veterans Health Administration (VHA) in the mid-1990s and large clinical databases, the possibility of an integrated registry for chronic conditions was created. In this report, we describe the creation of the VA MS Surveillance Registry (MSSR) and the initial roll out to several VA medical centers within the MS Center of Excellence (MSCoE). The MSSR is a unique platform with potential for improving MS patient care and clinical research.
Methods
The MSSR was designed by MSCoE health care providers in conjunction with IT specialists from the VA Northwest Innovation Center. Between 2012 and 2013, the team developed and tested a core template for data entry and refined an efficient data dashboard display to optimize clinical decisions. IT programmers created data entry templates that were tested by 4 to 5 clinicians who provided feedback in biweekly meetings. Technical problems were addressed and enhancements added and the trial process was repeated.
After creation of the prototype MS Assessment Tool (MSAT) data entry template that fed into the prototype MSSR, our team received a grant in 2013 for national development and sustainment. The MSSR was established on the VA Converged Registries Solution (CRS) platform, which is a hardware and software architecture designed to host individual clinical registries and eliminate duplicative development effort while maximizing the ability to create new patient registries. The common platform includes a relational database, Health Level 7 messaging, software classes, security modules, extraction services, and other components. The CR obtains data from the VA Corporate Data Warehouse (CDW), directly from the Veterans Health Information Systems and Technology Architecture (VISTA) and via direct user input using MSAT.
From 2016 to 2019, data from patients with MS followed in several VA MS regional programs were inputted into MSSR. A roll-out process to start patient data entry at VA medical centers began in 2017 that included an orientation, technical support, and quality assurance review. Twelve sites from Veteran Integrated Service Network (VISN) 5 (mid-Atlantic) and VISN 20 (Pacific Northwest) were included in the initial roll-out.
Results
After a live or remote telehealth or telephone visit, a clinician can access MSAT from the Computerized Patient Record System (CPRS) or directly from the MSSR online portal (Figure 1). The tool uses radio buttons and pull-down menus and takes about 5 to 15 minutes to complete with a list of required variables. Data is auto-saved for efficiency, and the key variables that are collected in MSAT are noted in Table 1. The MSAT subsequently creates a text integration utility progress note with health factors that is processed through an integration engine and eventually transmitted to VISTA and becomes part of the EHR and available to all health care providers involved in that patient’s care. Additionally, data from VA outpatient and inpatient utilization files, pharmacy, prosthetics, laboratory, and radiology databases are included in the CDW and are included in MSSR. With data from 1998 to the present, the MSAT and CDW databases can provide longitudinal data analysis.
Between 18,000 and 20,000 patients with MS are evaluated in the VHA annually, and 56,000 unique patients have been assessed since 1998. From 2016 to 2019, 1,743 patients with MS or related disorders were enrolled in MSSR (Table 2 and Figure 2). The mean (SD) age of patients was 56.0 (12.9) years and the male:female ratio was 2.7. Racial minorities make up 40% of the cohort. Among those with definite and possible MS, the mean disease duration was 22.7 years and the mean (SD) European Database for MS disability score was 4.7 (2.4) (Table 3). Three-quarters of the MSSR cohort have used ≥ 1 MS disease modifying therapy and 65% were classified as relapsing-remitting MS. An electronic dashboard was developed for health care providers to easily access demographic and clinical data for individuals and groups of patients (Figure 3). Standard and ad hoc reports can be generated from the MSSR. Larger longitudinal analyses can be performed with MSAT and clinical data from CDW. Data on comorbid conditions, pharmacy, radiology and prosthetics utilization, outpatient clinic and inpatient admission can be accessed for each patient or a group of patients.
In 2015, MSCoE published a larger national survey of the VA MS population.15 This study revealed that the majority of clinical features and demographics of the MSSR were not significantly different from other major US MS registries including the North American Research Committee on MS, the New York State MS Consortium, and the Sonya Slifka Study.16-18
Discussion
The MSSR is novel in that it combines a traditional MS registry with individual clinical and utilization data within the largest integrated health system in the US. This new registry leverages the existing databases related to cost of care, utilization, and pharmacy services to provide surveillance tools for longitudinal follow-up of the MS population within the VHA. Because the structure of the MSAT and MSSR were developed in a partnership between IT developers and clinicians, there has been mutual buy-in for those who use it and maintain it. This registry can be a test bed for standardized patient outcomes including the recently released MS Quality measures from the American Academy of Neurology.19
To achieve greater numbers across populations, there has been efforts in Europe to combine registries into a common European Register for MS. A recent survey found that although many European registries were heterogeneous, it would be possible to have a minimum common data set for limited epidemiologic studies.20 Still many registries do not have environmental or genetic data to evaluate etiologic questions.21 Additionally, most registries are not set up to evaluate cost or quality of care within a health care system.
Recommendations for maximizing the impact of existing MS registries were recently released by a panel of MS clinicians and researchers.22 The first recommendation was to create a broad network of registries that would communicate and collaborate. This group of MS registries would have strategic oversight and direction that would greatly streamline and leverage existing and future efforts. Second, registries should standardize data collection and management thereby enhancing the ability to share data and perform meta-analyses with aggregated data. Third, the collection of physician- and patient-reported outcomes should be encouraged to provide a more complete picture of MS. Finally, registries should prioritize research questions and utilize new technologies for data collection. These recommendations would help to coordinate existing registries and accelerate knowledge discovery.
The MSSR will contribute to the growing registry network of data. The MSSR can address questions about clinical outcomes, cost, quality with a growing data repository and linked biobank. Based on the CR platform, the MSSR allows for integration with other VA clinical registries, including registries for traumatic brain injuries, oncology, HIV, hepatitis C virus, and eye injuries. Identifying case outcomes related to other registries is optimized with the CR common structure.
Conclusion
The MSSR has been a useful tool for clinicians managing individual patients and their regional referral populations with real-time access to clinical and utilization data. It will also be a useful research tool in tracking epidemiological trends for the military population. The MSSR has enhanced clinical management of MS and serves as a national source for clinical outcomes.
1. Flachenecker P. Multiple sclerosis databases: present and future. Eur Neurol. 2014;72(suppl 1):29-31.
2. Koch-Henriksen N, Magyari M, Laursen B. Registers of multiple sclerosis in Denmark. Acta Neurol Scand. 2015;132(199):4-10.
3. Alping P, Piehl F, Langer-Gould A, Frisell T; COMBAT-MS Study Group. Validation of the Swedish Multiple Sclerosis Register: further improving a resource for pharmacoepidemiologic evaluations. Epidemiology. 2019;30(2):230-233.
4. Benjaminsen E, Myhr KM, Grytten N, Alstadhaug KB. Validation of the multiple sclerosis diagnosis in the Norwegian Patient Registry. Brain Behav. 2019;9(11):e01422.
5. Rocca WA, Yawn BP, St Sauver JL, Grossardt BR, Melton LJ 3rd. History of the Rochester Epidemiology Project: half a century of medical records linkage in a US population. Mayo Clin Proc. 2012;87(12):1202-1213.
6. Kingwell E, Zhu F, Marrie RA, et al. High incidence and increasing prevalence of multiple sclerosis in British Columbia, Canada: findings from over two decades (1991-2010). J Neurol. 2015;262(10):2352-2363.
7. Scalfari A, Neuhaus A, Degenhardt A, et al. The natural history of multiple sclerosis: a geographically based study 10: relapses and long-term disability. Brain. 2010;133(Pt 7):1914-1929.
8. Mahmud SM, Bozat-Emre S, Mostaço-Guidolin LC, Marrie RA. Registry cohort study to determine risk for multiple sclerosis after vaccination for pandemic influenza A(H1N1) with Arepanrix, Manitoba, Canada. Emerg Infect Dis. 2018;24(7):1267-1274.
9. Kister I, Chamot E, Bacon JH, Cutter G, Herbert J; New York State Multiple Sclerosis Consortium. Trend for decreasing Multiple Sclerosis Severity Scores (MSSS) with increasing calendar year of enrollment into the New York State Multiple Sclerosis Consortium. Mult Scler. 2011;17(6):725-733.
10. Minden SL, Frankel D, Hadden L, Perloffp J, Srinath KP, Hoaglin DC. The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics. Mult Scler. 2006;12(1):24-38.
11. Fox RJ, Salter A, Alster JM, et al. Risk tolerance to MS therapies: survey results from the NARCOMS registry. Mult Scler Relat Disord. 2015;4(3):241-249.
12. Kalincik T, Butzkueven H. The MSBase registry: Informing clinical practice. Mult Scler. 2019;25(14):1828-1834.
13. Gourraud PA, Henry RG, Cree BA, et al. Precision medicine in chronic disease management: the multiple sclerosis BioScreen. Ann Neurol. 2014;76(5):633-642.
14. Wallin MT, Culpepper WJ, Coffman P, et al. The Gulf War era multiple sclerosis cohort: age and incidence rates by race, sex and service. Brain. 2012;135(Pt 6):1778-1785.
15. Culpepper WJ, Wallin MT, Magder LS, et al. VHA Multiple Sclerosis Surveillance Registry and its similarities to other contemporary multiple sclerosis cohorts. J Rehabil Res Dev. 2015;52(3):263-272.
16. Salter A, Stahmann A, Ellenberger D, et al. Data harmonization for collaborative research among MS registries: a case study in employment [published online ahead of print, 2020 Mar 12]. Mult Scler. 2020;1352458520910499.
17. Vaughn CB, Kavak KS, Dwyer MG, et al. Fatigue at enrollment predicts EDSS worsening in the New York State Multiple Sclerosis Consortium. Mult Scler. 2020;26(1):99-108.
18. Minden SL, Kinkel RP, Machado HT, et al. Use and cost of disease-modifying therapies by Sonya Slifka Study participants: has anything really changed since 2000 and 2009? Mult Scler J Exp Transl Clin. 2019;5(1):2055217318820888.
19. Rae-Grant A, Bennett A, Sanders AE, Phipps M, Cheng E, Bever C. Quality improvement in neurology: multiple sclerosis quality measures: Executive summary [published correction appears in Neurology. 2016;86(15):1465]. Neurology. 2015;85(21):1904-1908.
20. Flachenecker P, Buckow K, Pugliatti M, et al; EUReMS Consortium. Multiple sclerosis registries in Europe - results of a systematic survey. Mult Scler. 2014;20(11):1523-1532.
21. Traboulsee A, McMullen K. How useful are MS registries?. Mult Scler. 2014;20(11):1423-1424.
22. Bebo BF Jr, Fox RJ, Lee K, Utz U, Thompson AJ. Landscape of MS patient cohorts and registries: Recommendations for maximizing impact. Mult Scler. 2018;24(5):579-586.
1. Flachenecker P. Multiple sclerosis databases: present and future. Eur Neurol. 2014;72(suppl 1):29-31.
2. Koch-Henriksen N, Magyari M, Laursen B. Registers of multiple sclerosis in Denmark. Acta Neurol Scand. 2015;132(199):4-10.
3. Alping P, Piehl F, Langer-Gould A, Frisell T; COMBAT-MS Study Group. Validation of the Swedish Multiple Sclerosis Register: further improving a resource for pharmacoepidemiologic evaluations. Epidemiology. 2019;30(2):230-233.
4. Benjaminsen E, Myhr KM, Grytten N, Alstadhaug KB. Validation of the multiple sclerosis diagnosis in the Norwegian Patient Registry. Brain Behav. 2019;9(11):e01422.
5. Rocca WA, Yawn BP, St Sauver JL, Grossardt BR, Melton LJ 3rd. History of the Rochester Epidemiology Project: half a century of medical records linkage in a US population. Mayo Clin Proc. 2012;87(12):1202-1213.
6. Kingwell E, Zhu F, Marrie RA, et al. High incidence and increasing prevalence of multiple sclerosis in British Columbia, Canada: findings from over two decades (1991-2010). J Neurol. 2015;262(10):2352-2363.
7. Scalfari A, Neuhaus A, Degenhardt A, et al. The natural history of multiple sclerosis: a geographically based study 10: relapses and long-term disability. Brain. 2010;133(Pt 7):1914-1929.
8. Mahmud SM, Bozat-Emre S, Mostaço-Guidolin LC, Marrie RA. Registry cohort study to determine risk for multiple sclerosis after vaccination for pandemic influenza A(H1N1) with Arepanrix, Manitoba, Canada. Emerg Infect Dis. 2018;24(7):1267-1274.
9. Kister I, Chamot E, Bacon JH, Cutter G, Herbert J; New York State Multiple Sclerosis Consortium. Trend for decreasing Multiple Sclerosis Severity Scores (MSSS) with increasing calendar year of enrollment into the New York State Multiple Sclerosis Consortium. Mult Scler. 2011;17(6):725-733.
10. Minden SL, Frankel D, Hadden L, Perloffp J, Srinath KP, Hoaglin DC. The Sonya Slifka Longitudinal Multiple Sclerosis Study: methods and sample characteristics. Mult Scler. 2006;12(1):24-38.
11. Fox RJ, Salter A, Alster JM, et al. Risk tolerance to MS therapies: survey results from the NARCOMS registry. Mult Scler Relat Disord. 2015;4(3):241-249.
12. Kalincik T, Butzkueven H. The MSBase registry: Informing clinical practice. Mult Scler. 2019;25(14):1828-1834.
13. Gourraud PA, Henry RG, Cree BA, et al. Precision medicine in chronic disease management: the multiple sclerosis BioScreen. Ann Neurol. 2014;76(5):633-642.
14. Wallin MT, Culpepper WJ, Coffman P, et al. The Gulf War era multiple sclerosis cohort: age and incidence rates by race, sex and service. Brain. 2012;135(Pt 6):1778-1785.
15. Culpepper WJ, Wallin MT, Magder LS, et al. VHA Multiple Sclerosis Surveillance Registry and its similarities to other contemporary multiple sclerosis cohorts. J Rehabil Res Dev. 2015;52(3):263-272.
16. Salter A, Stahmann A, Ellenberger D, et al. Data harmonization for collaborative research among MS registries: a case study in employment [published online ahead of print, 2020 Mar 12]. Mult Scler. 2020;1352458520910499.
17. Vaughn CB, Kavak KS, Dwyer MG, et al. Fatigue at enrollment predicts EDSS worsening in the New York State Multiple Sclerosis Consortium. Mult Scler. 2020;26(1):99-108.
18. Minden SL, Kinkel RP, Machado HT, et al. Use and cost of disease-modifying therapies by Sonya Slifka Study participants: has anything really changed since 2000 and 2009? Mult Scler J Exp Transl Clin. 2019;5(1):2055217318820888.
19. Rae-Grant A, Bennett A, Sanders AE, Phipps M, Cheng E, Bever C. Quality improvement in neurology: multiple sclerosis quality measures: Executive summary [published correction appears in Neurology. 2016;86(15):1465]. Neurology. 2015;85(21):1904-1908.
20. Flachenecker P, Buckow K, Pugliatti M, et al; EUReMS Consortium. Multiple sclerosis registries in Europe - results of a systematic survey. Mult Scler. 2014;20(11):1523-1532.
21. Traboulsee A, McMullen K. How useful are MS registries?. Mult Scler. 2014;20(11):1423-1424.
22. Bebo BF Jr, Fox RJ, Lee K, Utz U, Thompson AJ. Landscape of MS patient cohorts and registries: Recommendations for maximizing impact. Mult Scler. 2018;24(5):579-586.
The Multiple Sclerosis Centers of Excellence: A Model of Excellence in the VA (FULL)
The Veterans Health Administration (VHA) has established a number of centers of excellence (CoEs), including centers focused on posttraumatic stress disorder, suicide prevention, epilepsy, and, most recently, the Senator Elizabeth Dole CoE for Veteran and Caregiver Research. Some VA CoE serve as centralized locations for specialty care. For example, the VA Epilepsy CoE is a network of 16 facilities that provide comprehensive epilepsy care for veterans with seizure disorders, including expert and presurgical evaluations and inpatient monitoring.
In contrast, other CoEs, including the multiple sclerosis (MS) CoE, achieve their missions by serving as a resource center to a network of regional and supporting various programs to optimize the care of veterans across the nation within their home US Department of Veterans Affairs (VA) medical center (VAMC). The MSCoE are charged, through VHA Directive 1011.06, with establishing at least 1 VA MS Regional Program in each of the 21 Veteran Integrated Service Networks (VISNs) across the country and integrating these and affiliated MS Support Programs into the MS National Network. Currently, there are 29 MS regional programs and 49 MS support programs across the US.1
Established in 2003, the MSCoE is dedicated to furthering the understanding of MS, its impact on veterans, and effective treatments to help manage the disease and its symptoms. In 2002, 2 coordinating centers were selected based on a competitive review process. The MSCoE-East is located at the Baltimore, Maryland and Washington, DC VAMC and serves VISNs 1 to 10. The MSCoE-West serves VISNs 11 to 23 and is jointly-based at VA Puget Sound Health Care System in Seattle, Washington and VA Portland Health Care System in Portland, Oregon. The MSCoEs were made permanent by The Veteran’ Benefits, Healthcare and Information Technology Act of 2006 (38 USC §7330). By partnering with veterans, caregivers, health care professionals, and other affiliates, the MSCoE endeavor to optimize health, activities, participation and quality of life for veterans with MS.
Core Functions
The MSCoE has a 3-part mission. First, the MSCoE seeks to expand care coordination between VAMCs by developing a national network of VA MSCoE Regional and Support Programs. Second, the MSCoE provides resources to VA health care providers (HCPs) through a collaborative approach to clinical care, education, research, and informatics. Third, the MSCoE improves the quality and consistency of health care services delivered to veterans diagnosed with MS nationwide. To meet its objectives, the MSCoE activities are organized around 4 functional cores: clinical care, research, education and training, and informatics and telemedicine.
Clinical Care
The MSCoE delivers high-quality clinical care by identifying veterans with MS who use VA services, understanding their needs, and facilitating appropriate interventions. Veterans with MS are a special cohort for many reasons including that about 70% are male. Men and women veterans not only have different genetics, but also may have different environmental exposures and other risk factors for MS. Since 1998, the VHA has evaluated > 50,000 veterans with MS. Over the past decade, between 18,000 and 20,000 veterans with MS have accessed care within the VHA annually.
The MSCoE advocates for appropriate and safe use of currently available MS disease modifying therapies through collaborations with the VA Pharmacy Benefits Management Service (PBM). The MSCoE partners with PBM to develop and disseminate Criteria For Use, safety, and economic monitoring of the impacts of the MS therapies. The MSCoE also provide national consultation services for complex MS cases, clinical education to VA HCPs, and mentors fellows, residents, and medical students.
The VA provides numerous resources that are not readily available in other health care systems and facilitate the care for patients with chronic diseases, including providing low or no co-pays to patients for MS disease modifying agents and other MS related medications, access to medically necessary adaptive equipment at no charge, the Home Improvement and Structural Alteration (HISA) grant for assistance with safe home ingress and egress, respite care, access to a homemaker/home health aide, and caregiver support programs. Eligible veterans also can access additional resources such as adaptive housing and an automobile grant. The VA also provides substantial hands-on assistance to veterans who are homeless. The clinical team and a veteran with MS can leverage VA resources through the National MS Society (NMSS) Navigator Program as well as other community resources.2
The VHA encourages physical activity and wellness through sports and leisure. Veterans with MS can participate in sports programs and special events, including the National Veterans Wheelchair Games, the National Disabled Veterans Winter Sports Clinic, the National Disabled Veterans TEE (Training, Exposure and Experience) golf tournament, the National Veterans Summer Sports Clinic, the National Veterans Golden Age Games, and the National Veterans Creative Sports Festival. HCPs or veterans who are not sure how to access any of these programs can contact the MSCoE or their local VA social workers.
Research
The primary goal of the MSCoE research core is to conduct clinical, health services, epidemiologic, and basic science research relevant to veterans with MS. The MSCoE serves to enhance collaboration among VAMCs, increase the participation of veterans in research, and provide research mentorship for the next generation of VA MS scientists. MSCoE research is carried out by investigators at the MSCoE and the MS Regional Programs, often in collaboration with investigators at academic institutions. This research is supported by competitive grant awards from a variety of funding agencies including the VA Research and Development Service (R&D) and the NMSS. Results from about 40 research grants in Fiscal Year 2019 were disseminated through 34 peer-reviewed publications, 30 posters, presentations, abstracts, and clinical practice guidelines.
There are many examples of recent high impact MS research performed by MSCoE investigators. For example, MSCoE researchers noted an increase in the estimated prevalence of MS to 1 million individuals in the US, about twice the previously estimated prevalence.3-5 In addition, a multicenter study highlighted the prevalence of MS misdiagnosis and common confounders for MS.6 Other research includes pilot clinical trials evaluating lipoic acid as a potential disease modifying therapy in people with secondary progressive MS and the impact of a multicomponent walking aid selection, fitting, and training program for preventing falls in people with MS.7,8 Clinical trial also are investigating telehealth counseling to improve physical activity in MS and a systematic review of rehabilitation interventions in MS.9,10
Education and Training
A unified program of education is essential to effective management of MS nationally. The primary goal of the education and training core is to provide a national program of MS education for HCPs, veterans, and caregivers to improve knowledge, enhance access to resources, and promote effective management strategies. The MSCoE collaborate with the Paralyzed Veterans of America (PVA), the Consortium of MS Centers (CMSC), the NMSS, and other national service organizations to increase educational opportunities, share knowledge, and expand participation.
The MSCoE education and training core produces a range of products both veterans, HCPs, and others affected by MS. The MSCoE sends a biannual patient newsletter to > 20,000 veterans and a monthly email to > 1,000 VA HCPs. Specific opportunities for HCP education include accredited multidisciplinary MS webinars, sponsored symposia and workshops at the CMSC and PVA Summit annual meetings, and presentations at other university and professional conferences. Enduring educational opportunities for veterans, caregivers, and HCPs can also be found by visiting www.va.gov/ms.
The MSCoE coordinate postdoctoral fellowship training programs to develop expertise in MS health care for the future. It offers VA physician fellowships for neurologists in Baltimore and Portland and for physiatrists in Seattle as well as NMSS fellowships for education and research. In 2019, MSCoE had 6 MD Fellows and 1 PhD Fellow.
Clinical Informatics and Telehealth
The primary goal of the informatics and telemedicine core is to employ state-of-the-art informatics, telemedicine technology, and the MSCoE website, to improve MS health care delivery. The VA has a integrated electronic health record and various data repositories are stored in the VHA Corporate Data Warehouse (CDW). MSCoE utilizes the CDW to maintain a national MS administrative data repository to understand the VHA care provided to veterans with MS. Data from the CDW have also served as an important resource to facilitate a wide range of veteran-focused MS research. This research has addressed clinical conditions like pain and obesity; health behaviors like smoking, alcohol use, and exercise as well as issues related to care delivery such as specialty care access, medication adherence, and appointment attendance.11-19
Monitoring the health of veterans with MS in the VA requires additional data not available in the CDW. To this end, we have developed the MS Surveillance Registry (MSSR), funded and maintained by the VA Office of Information Technology as part of their Veteran Integrated Registry Platform (VIRP). The purpose of the MSSR is to understand the unique characteristics and treatment patterns of veterans with MS in order to optimize their VHA care. HCPs input MS-specific clinical data on their patients into the MSSR, either through the MS Assessment Tool (MSAT) in the Computerized Patient Record System (CPRS) or through a secure online portal. Other data from existing databases from the CDW is also automatically fed into the MSSR. The MSSR continues to be developed and populated to serve as a resource for the future.
Neurologists, physiatrists, psychologists, and rehabilitation specialists can use telehealth to evaluate and treat veterans who have difficulty accessing outpatient clinics, either because of mobility limitations, or distance. Between 2012 and 2015, the VA MSCoE, together with the Epilepsy CoE and the Parkinson’s Disease Research and Clinical Centers in VISNs 5, 6 (mid-Atlantic) and 20 (Pacific Northwest) initiated an integrated teleneurology project. The goal of this project was to improve patient access to care at 4 tertiary and 12 regional VAMCs. A study team, with administrators and key clinical stakeholders, followed a traditional project management approach to design, plan, implement and evaluate an optimal model for communication and referrals with both live visits and telehealth (Table). Major outcomes of the project included: delivering subspecialty teleneurology to 47 patient sites, increasing interfacility consultation by 133% while reducing wait times by roughly 40%, and increasing telemedicine workload at these centers from 95 annual encounters in 2012 to 1,245 annual encounters in 2015 (Figure).
Today, telehealth for veterans with MS can be delivered to nearby VA facilities closer to their home, within their home, or anywhere else the veteran can use a cellphone or tablet. Telehealth visits can save travel time and expenses and optimize VA productivity and clinic use. The MSCoE and many of the MS regional programs are using telehealth for MS physician follow-up and therapies. The VA Office of Rural Health is also currently working with the MS network to use telehealth to increase access to physical therapy to those who have difficulty coming into clinic.
MSCoE Resources
The MSCoE is funded by VA Central Office through the Office of Specialty Care by Special Purpose funds. The directive specifies that funding for the regional and support programs is through Veterans Equitable Resource Allocation based on VISN and facility workload and complexity. Any research is funded separately through grants, some from VA R&D and others from other sources including the National Institutes of Health, the Patient Centered Outcome Research Institute, affiliated universities, the NMSS, the MS Society of Canada, the Consortium of MS Centers, foundations, and industry.
In 2019, MSCoE investigators received grants totaling > $18 million in funding. In-kind support also is provided by the PVA, the CMSC, the NMSS, and others. The first 3 foundations have been supporters since the inception of the MSCoE and have provided opportunities for the dissemination of education and research for HCPs, fellows, residents and medical students; travel; meeting rooms for MSCoE national meetings; exhibit space for HCP outreach; competitive research and educational grant support; programming and resources for veterans and significant others; organizational expertise; and opportunities for VA HCPs, veterans, and caregivers to learn how to navigate MS with others in the private sector.
Conclusion
The MSCoE had a tremendous impact on improving the consistency and quality of care for veterans with MS through clinical care, research, education and informatics and telehealth. Since opening in 2003, there has been an increase in the number of MS specialty clinics, served veterans with MS, and veterans receiving specialty neurologic and rehabilitation services in VA. Research programs in MS have been initiated to address key questions relevant to veterans with MS, including immunology, epidemiology, clinical care, and rehabilitation. Educational programs and products have evolved with technology and had a greater impact through partnerships with veteran and MS nonprofit organizations.
MSCoE strives to minimize impairment and maximize quality of life for veterans with MS by leveraging integrated electronic health records, data repositories, and telehealth services. These efforts have all improved veteran health, access and safety. We look forward to continuing into the next decade by bringing fresh ideas to the care of veterans with MS, their families and caregivers.
1. US Department of Veterans Affairs, Multiple Sclerosis Centers of Excellence. Multiple Sclerosis System of Care-VHA Directive 1101.06 and Multiple Sclerosis Centers of Excellence network facilities. https://www.va.gov/MS/veterans/find_a_clinic/index_clinics.asp. Updated February 26, 2020. Accessed March 6, 2020.
2. National MS Society. MS navigator program. https://www.nationalmssociety.org/For-Professionals/Clinical-Care/MS-Navigator-Program. Accessed March 6, 2020.
3. Wallin MT, Culpepper WJ, Campbell JD, et al. The prevalence of MS in the United States: a population-based estimate using health claims data. Neurology. 2019;92:e1029-e1040.
4. GBD 2016 Multiple Sclerosis Collaborators. Global, regional, and national burden of multiple sclerosis 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(3):269-285.
5. GBD 2016 Neurology Collaborators. Global, regional, and national burden of neurological disorders, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(5):459-480.
6. Solomon AJ, Bourdette DN, Cross AH, et al. The contemporary spectrum of multiple sclerosis misdiagnosis: a multicenter study. Neurology. 2016;87(13):1393-1399.
7. Spain R, Powers K, Murchison C, et al. Lipoic acid in secondary progressive MS: a randomized controlled pilot trial. Neurol Neuroimmunol Neuroinflamm. 2017;4(5):e374.
8. Martini DN, Zeeboer E, Hildebrand A, Fling BW, Hugos CL, Cameron MH. ADSTEP: preliminary investigation of a multicomponent walking aid program in people with multiple sclerosis. Arch Phys Med Rehabil. 2018;99(10):2050-2058.
9. Turner AP, Hartoonian N, Sloan AP, et al. Improving fatigue and depression in individuals with multiple sclerosis using telephone-administered physical activity counseling. J Consult Clin Psychol. 2016;84(4):297-309.
10. Haselkorn JK, Hughes C, Rae-Grant A, et al. Summary of comprehensive systematic review: rehabilitation in multiple sclerosis: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology. 2015;85(21):1896-1903.
11. Hirsh AT, Turner AP, Ehde DM, Haselkorn JK. Prevalence and impact of pain in multiple sclerosis: physical and psychologic contributors. Arch Phys Med Rehabil. 2009;90(4):646-651.
12. Khurana SR, Bamer AM, Turner AP, et al. The prevalence of overweight and obesity in veterans with multiple sclerosis. Am J Phys Med Rehabil. 2009;88(2):83-91.
13. Turner AP, Kivlahan DR, Kazis LE, Haselkorn JK. Smoking among veterans with multiple sclerosis: prevalence correlates, quit attempts, and unmet need for services. Arch Phys Med Rehabil. 2007;88(11):1394-1399.
14. Turner AP, Hawkins EJ, Haselkorn JK, Kivlahan DR. Alcohol misuse and multiple sclerosis. Arch Phys Med Rehabil. 2009;90(5):842-848.
15. Turner AP, Kivlahan DR, Haselkorn JK. Exercise and quality of life among people with multiple sclerosis: looking beyond physical functioning to mental health and participation in life. Arch Phys Med Rehabil. 2009;90(3):420-428.
16. Turner AP, Chapko MK, Yanez D, et al. Access to multiple sclerosis specialty care. PM R. 2013;5(12):1044-1050.
17. Gromisch ES, Turner AP, Leipertz SL, Beauvais J, Haselkorn JK. Risk factors for suboptimal medication adherence in persons with multiple sclerosis: development of an electronic health record-based explanatory model for disease-modifying therapy use [published online ahead of print, 2019 Dec 3]. Arch Phys Med Rehabil. 2019;S0003-9993(19)31430-3143.
18. Settle JR, Maloni H, Bedra M, Finkelstein J, Zhan M, Wallin M. Monitoring medication adherence in multiple sclerosis using a novel web-based tool. J Telemed Telecare. 2016;22:225-233.
19. Gromisch ES, Turner AP, Leipertz SL, Beauvais J, Haselkorn JK. Who is not coming to clinic? A predictive model of excessive missed appointments in persons with multiple sclerosis. Mult Scler Rel Dis. In Press.
The Veterans Health Administration (VHA) has established a number of centers of excellence (CoEs), including centers focused on posttraumatic stress disorder, suicide prevention, epilepsy, and, most recently, the Senator Elizabeth Dole CoE for Veteran and Caregiver Research. Some VA CoE serve as centralized locations for specialty care. For example, the VA Epilepsy CoE is a network of 16 facilities that provide comprehensive epilepsy care for veterans with seizure disorders, including expert and presurgical evaluations and inpatient monitoring.
In contrast, other CoEs, including the multiple sclerosis (MS) CoE, achieve their missions by serving as a resource center to a network of regional and supporting various programs to optimize the care of veterans across the nation within their home US Department of Veterans Affairs (VA) medical center (VAMC). The MSCoE are charged, through VHA Directive 1011.06, with establishing at least 1 VA MS Regional Program in each of the 21 Veteran Integrated Service Networks (VISNs) across the country and integrating these and affiliated MS Support Programs into the MS National Network. Currently, there are 29 MS regional programs and 49 MS support programs across the US.1
Established in 2003, the MSCoE is dedicated to furthering the understanding of MS, its impact on veterans, and effective treatments to help manage the disease and its symptoms. In 2002, 2 coordinating centers were selected based on a competitive review process. The MSCoE-East is located at the Baltimore, Maryland and Washington, DC VAMC and serves VISNs 1 to 10. The MSCoE-West serves VISNs 11 to 23 and is jointly-based at VA Puget Sound Health Care System in Seattle, Washington and VA Portland Health Care System in Portland, Oregon. The MSCoEs were made permanent by The Veteran’ Benefits, Healthcare and Information Technology Act of 2006 (38 USC §7330). By partnering with veterans, caregivers, health care professionals, and other affiliates, the MSCoE endeavor to optimize health, activities, participation and quality of life for veterans with MS.
Core Functions
The MSCoE has a 3-part mission. First, the MSCoE seeks to expand care coordination between VAMCs by developing a national network of VA MSCoE Regional and Support Programs. Second, the MSCoE provides resources to VA health care providers (HCPs) through a collaborative approach to clinical care, education, research, and informatics. Third, the MSCoE improves the quality and consistency of health care services delivered to veterans diagnosed with MS nationwide. To meet its objectives, the MSCoE activities are organized around 4 functional cores: clinical care, research, education and training, and informatics and telemedicine.
Clinical Care
The MSCoE delivers high-quality clinical care by identifying veterans with MS who use VA services, understanding their needs, and facilitating appropriate interventions. Veterans with MS are a special cohort for many reasons including that about 70% are male. Men and women veterans not only have different genetics, but also may have different environmental exposures and other risk factors for MS. Since 1998, the VHA has evaluated > 50,000 veterans with MS. Over the past decade, between 18,000 and 20,000 veterans with MS have accessed care within the VHA annually.
The MSCoE advocates for appropriate and safe use of currently available MS disease modifying therapies through collaborations with the VA Pharmacy Benefits Management Service (PBM). The MSCoE partners with PBM to develop and disseminate Criteria For Use, safety, and economic monitoring of the impacts of the MS therapies. The MSCoE also provide national consultation services for complex MS cases, clinical education to VA HCPs, and mentors fellows, residents, and medical students.
The VA provides numerous resources that are not readily available in other health care systems and facilitate the care for patients with chronic diseases, including providing low or no co-pays to patients for MS disease modifying agents and other MS related medications, access to medically necessary adaptive equipment at no charge, the Home Improvement and Structural Alteration (HISA) grant for assistance with safe home ingress and egress, respite care, access to a homemaker/home health aide, and caregiver support programs. Eligible veterans also can access additional resources such as adaptive housing and an automobile grant. The VA also provides substantial hands-on assistance to veterans who are homeless. The clinical team and a veteran with MS can leverage VA resources through the National MS Society (NMSS) Navigator Program as well as other community resources.2
The VHA encourages physical activity and wellness through sports and leisure. Veterans with MS can participate in sports programs and special events, including the National Veterans Wheelchair Games, the National Disabled Veterans Winter Sports Clinic, the National Disabled Veterans TEE (Training, Exposure and Experience) golf tournament, the National Veterans Summer Sports Clinic, the National Veterans Golden Age Games, and the National Veterans Creative Sports Festival. HCPs or veterans who are not sure how to access any of these programs can contact the MSCoE or their local VA social workers.
Research
The primary goal of the MSCoE research core is to conduct clinical, health services, epidemiologic, and basic science research relevant to veterans with MS. The MSCoE serves to enhance collaboration among VAMCs, increase the participation of veterans in research, and provide research mentorship for the next generation of VA MS scientists. MSCoE research is carried out by investigators at the MSCoE and the MS Regional Programs, often in collaboration with investigators at academic institutions. This research is supported by competitive grant awards from a variety of funding agencies including the VA Research and Development Service (R&D) and the NMSS. Results from about 40 research grants in Fiscal Year 2019 were disseminated through 34 peer-reviewed publications, 30 posters, presentations, abstracts, and clinical practice guidelines.
There are many examples of recent high impact MS research performed by MSCoE investigators. For example, MSCoE researchers noted an increase in the estimated prevalence of MS to 1 million individuals in the US, about twice the previously estimated prevalence.3-5 In addition, a multicenter study highlighted the prevalence of MS misdiagnosis and common confounders for MS.6 Other research includes pilot clinical trials evaluating lipoic acid as a potential disease modifying therapy in people with secondary progressive MS and the impact of a multicomponent walking aid selection, fitting, and training program for preventing falls in people with MS.7,8 Clinical trial also are investigating telehealth counseling to improve physical activity in MS and a systematic review of rehabilitation interventions in MS.9,10
Education and Training
A unified program of education is essential to effective management of MS nationally. The primary goal of the education and training core is to provide a national program of MS education for HCPs, veterans, and caregivers to improve knowledge, enhance access to resources, and promote effective management strategies. The MSCoE collaborate with the Paralyzed Veterans of America (PVA), the Consortium of MS Centers (CMSC), the NMSS, and other national service organizations to increase educational opportunities, share knowledge, and expand participation.
The MSCoE education and training core produces a range of products both veterans, HCPs, and others affected by MS. The MSCoE sends a biannual patient newsletter to > 20,000 veterans and a monthly email to > 1,000 VA HCPs. Specific opportunities for HCP education include accredited multidisciplinary MS webinars, sponsored symposia and workshops at the CMSC and PVA Summit annual meetings, and presentations at other university and professional conferences. Enduring educational opportunities for veterans, caregivers, and HCPs can also be found by visiting www.va.gov/ms.
The MSCoE coordinate postdoctoral fellowship training programs to develop expertise in MS health care for the future. It offers VA physician fellowships for neurologists in Baltimore and Portland and for physiatrists in Seattle as well as NMSS fellowships for education and research. In 2019, MSCoE had 6 MD Fellows and 1 PhD Fellow.
Clinical Informatics and Telehealth
The primary goal of the informatics and telemedicine core is to employ state-of-the-art informatics, telemedicine technology, and the MSCoE website, to improve MS health care delivery. The VA has a integrated electronic health record and various data repositories are stored in the VHA Corporate Data Warehouse (CDW). MSCoE utilizes the CDW to maintain a national MS administrative data repository to understand the VHA care provided to veterans with MS. Data from the CDW have also served as an important resource to facilitate a wide range of veteran-focused MS research. This research has addressed clinical conditions like pain and obesity; health behaviors like smoking, alcohol use, and exercise as well as issues related to care delivery such as specialty care access, medication adherence, and appointment attendance.11-19
Monitoring the health of veterans with MS in the VA requires additional data not available in the CDW. To this end, we have developed the MS Surveillance Registry (MSSR), funded and maintained by the VA Office of Information Technology as part of their Veteran Integrated Registry Platform (VIRP). The purpose of the MSSR is to understand the unique characteristics and treatment patterns of veterans with MS in order to optimize their VHA care. HCPs input MS-specific clinical data on their patients into the MSSR, either through the MS Assessment Tool (MSAT) in the Computerized Patient Record System (CPRS) or through a secure online portal. Other data from existing databases from the CDW is also automatically fed into the MSSR. The MSSR continues to be developed and populated to serve as a resource for the future.
Neurologists, physiatrists, psychologists, and rehabilitation specialists can use telehealth to evaluate and treat veterans who have difficulty accessing outpatient clinics, either because of mobility limitations, or distance. Between 2012 and 2015, the VA MSCoE, together with the Epilepsy CoE and the Parkinson’s Disease Research and Clinical Centers in VISNs 5, 6 (mid-Atlantic) and 20 (Pacific Northwest) initiated an integrated teleneurology project. The goal of this project was to improve patient access to care at 4 tertiary and 12 regional VAMCs. A study team, with administrators and key clinical stakeholders, followed a traditional project management approach to design, plan, implement and evaluate an optimal model for communication and referrals with both live visits and telehealth (Table). Major outcomes of the project included: delivering subspecialty teleneurology to 47 patient sites, increasing interfacility consultation by 133% while reducing wait times by roughly 40%, and increasing telemedicine workload at these centers from 95 annual encounters in 2012 to 1,245 annual encounters in 2015 (Figure).
Today, telehealth for veterans with MS can be delivered to nearby VA facilities closer to their home, within their home, or anywhere else the veteran can use a cellphone or tablet. Telehealth visits can save travel time and expenses and optimize VA productivity and clinic use. The MSCoE and many of the MS regional programs are using telehealth for MS physician follow-up and therapies. The VA Office of Rural Health is also currently working with the MS network to use telehealth to increase access to physical therapy to those who have difficulty coming into clinic.
MSCoE Resources
The MSCoE is funded by VA Central Office through the Office of Specialty Care by Special Purpose funds. The directive specifies that funding for the regional and support programs is through Veterans Equitable Resource Allocation based on VISN and facility workload and complexity. Any research is funded separately through grants, some from VA R&D and others from other sources including the National Institutes of Health, the Patient Centered Outcome Research Institute, affiliated universities, the NMSS, the MS Society of Canada, the Consortium of MS Centers, foundations, and industry.
In 2019, MSCoE investigators received grants totaling > $18 million in funding. In-kind support also is provided by the PVA, the CMSC, the NMSS, and others. The first 3 foundations have been supporters since the inception of the MSCoE and have provided opportunities for the dissemination of education and research for HCPs, fellows, residents and medical students; travel; meeting rooms for MSCoE national meetings; exhibit space for HCP outreach; competitive research and educational grant support; programming and resources for veterans and significant others; organizational expertise; and opportunities for VA HCPs, veterans, and caregivers to learn how to navigate MS with others in the private sector.
Conclusion
The MSCoE had a tremendous impact on improving the consistency and quality of care for veterans with MS through clinical care, research, education and informatics and telehealth. Since opening in 2003, there has been an increase in the number of MS specialty clinics, served veterans with MS, and veterans receiving specialty neurologic and rehabilitation services in VA. Research programs in MS have been initiated to address key questions relevant to veterans with MS, including immunology, epidemiology, clinical care, and rehabilitation. Educational programs and products have evolved with technology and had a greater impact through partnerships with veteran and MS nonprofit organizations.
MSCoE strives to minimize impairment and maximize quality of life for veterans with MS by leveraging integrated electronic health records, data repositories, and telehealth services. These efforts have all improved veteran health, access and safety. We look forward to continuing into the next decade by bringing fresh ideas to the care of veterans with MS, their families and caregivers.
The Veterans Health Administration (VHA) has established a number of centers of excellence (CoEs), including centers focused on posttraumatic stress disorder, suicide prevention, epilepsy, and, most recently, the Senator Elizabeth Dole CoE for Veteran and Caregiver Research. Some VA CoE serve as centralized locations for specialty care. For example, the VA Epilepsy CoE is a network of 16 facilities that provide comprehensive epilepsy care for veterans with seizure disorders, including expert and presurgical evaluations and inpatient monitoring.
In contrast, other CoEs, including the multiple sclerosis (MS) CoE, achieve their missions by serving as a resource center to a network of regional and supporting various programs to optimize the care of veterans across the nation within their home US Department of Veterans Affairs (VA) medical center (VAMC). The MSCoE are charged, through VHA Directive 1011.06, with establishing at least 1 VA MS Regional Program in each of the 21 Veteran Integrated Service Networks (VISNs) across the country and integrating these and affiliated MS Support Programs into the MS National Network. Currently, there are 29 MS regional programs and 49 MS support programs across the US.1
Established in 2003, the MSCoE is dedicated to furthering the understanding of MS, its impact on veterans, and effective treatments to help manage the disease and its symptoms. In 2002, 2 coordinating centers were selected based on a competitive review process. The MSCoE-East is located at the Baltimore, Maryland and Washington, DC VAMC and serves VISNs 1 to 10. The MSCoE-West serves VISNs 11 to 23 and is jointly-based at VA Puget Sound Health Care System in Seattle, Washington and VA Portland Health Care System in Portland, Oregon. The MSCoEs were made permanent by The Veteran’ Benefits, Healthcare and Information Technology Act of 2006 (38 USC §7330). By partnering with veterans, caregivers, health care professionals, and other affiliates, the MSCoE endeavor to optimize health, activities, participation and quality of life for veterans with MS.
Core Functions
The MSCoE has a 3-part mission. First, the MSCoE seeks to expand care coordination between VAMCs by developing a national network of VA MSCoE Regional and Support Programs. Second, the MSCoE provides resources to VA health care providers (HCPs) through a collaborative approach to clinical care, education, research, and informatics. Third, the MSCoE improves the quality and consistency of health care services delivered to veterans diagnosed with MS nationwide. To meet its objectives, the MSCoE activities are organized around 4 functional cores: clinical care, research, education and training, and informatics and telemedicine.
Clinical Care
The MSCoE delivers high-quality clinical care by identifying veterans with MS who use VA services, understanding their needs, and facilitating appropriate interventions. Veterans with MS are a special cohort for many reasons including that about 70% are male. Men and women veterans not only have different genetics, but also may have different environmental exposures and other risk factors for MS. Since 1998, the VHA has evaluated > 50,000 veterans with MS. Over the past decade, between 18,000 and 20,000 veterans with MS have accessed care within the VHA annually.
The MSCoE advocates for appropriate and safe use of currently available MS disease modifying therapies through collaborations with the VA Pharmacy Benefits Management Service (PBM). The MSCoE partners with PBM to develop and disseminate Criteria For Use, safety, and economic monitoring of the impacts of the MS therapies. The MSCoE also provide national consultation services for complex MS cases, clinical education to VA HCPs, and mentors fellows, residents, and medical students.
The VA provides numerous resources that are not readily available in other health care systems and facilitate the care for patients with chronic diseases, including providing low or no co-pays to patients for MS disease modifying agents and other MS related medications, access to medically necessary adaptive equipment at no charge, the Home Improvement and Structural Alteration (HISA) grant for assistance with safe home ingress and egress, respite care, access to a homemaker/home health aide, and caregiver support programs. Eligible veterans also can access additional resources such as adaptive housing and an automobile grant. The VA also provides substantial hands-on assistance to veterans who are homeless. The clinical team and a veteran with MS can leverage VA resources through the National MS Society (NMSS) Navigator Program as well as other community resources.2
The VHA encourages physical activity and wellness through sports and leisure. Veterans with MS can participate in sports programs and special events, including the National Veterans Wheelchair Games, the National Disabled Veterans Winter Sports Clinic, the National Disabled Veterans TEE (Training, Exposure and Experience) golf tournament, the National Veterans Summer Sports Clinic, the National Veterans Golden Age Games, and the National Veterans Creative Sports Festival. HCPs or veterans who are not sure how to access any of these programs can contact the MSCoE or their local VA social workers.
Research
The primary goal of the MSCoE research core is to conduct clinical, health services, epidemiologic, and basic science research relevant to veterans with MS. The MSCoE serves to enhance collaboration among VAMCs, increase the participation of veterans in research, and provide research mentorship for the next generation of VA MS scientists. MSCoE research is carried out by investigators at the MSCoE and the MS Regional Programs, often in collaboration with investigators at academic institutions. This research is supported by competitive grant awards from a variety of funding agencies including the VA Research and Development Service (R&D) and the NMSS. Results from about 40 research grants in Fiscal Year 2019 were disseminated through 34 peer-reviewed publications, 30 posters, presentations, abstracts, and clinical practice guidelines.
There are many examples of recent high impact MS research performed by MSCoE investigators. For example, MSCoE researchers noted an increase in the estimated prevalence of MS to 1 million individuals in the US, about twice the previously estimated prevalence.3-5 In addition, a multicenter study highlighted the prevalence of MS misdiagnosis and common confounders for MS.6 Other research includes pilot clinical trials evaluating lipoic acid as a potential disease modifying therapy in people with secondary progressive MS and the impact of a multicomponent walking aid selection, fitting, and training program for preventing falls in people with MS.7,8 Clinical trial also are investigating telehealth counseling to improve physical activity in MS and a systematic review of rehabilitation interventions in MS.9,10
Education and Training
A unified program of education is essential to effective management of MS nationally. The primary goal of the education and training core is to provide a national program of MS education for HCPs, veterans, and caregivers to improve knowledge, enhance access to resources, and promote effective management strategies. The MSCoE collaborate with the Paralyzed Veterans of America (PVA), the Consortium of MS Centers (CMSC), the NMSS, and other national service organizations to increase educational opportunities, share knowledge, and expand participation.
The MSCoE education and training core produces a range of products both veterans, HCPs, and others affected by MS. The MSCoE sends a biannual patient newsletter to > 20,000 veterans and a monthly email to > 1,000 VA HCPs. Specific opportunities for HCP education include accredited multidisciplinary MS webinars, sponsored symposia and workshops at the CMSC and PVA Summit annual meetings, and presentations at other university and professional conferences. Enduring educational opportunities for veterans, caregivers, and HCPs can also be found by visiting www.va.gov/ms.
The MSCoE coordinate postdoctoral fellowship training programs to develop expertise in MS health care for the future. It offers VA physician fellowships for neurologists in Baltimore and Portland and for physiatrists in Seattle as well as NMSS fellowships for education and research. In 2019, MSCoE had 6 MD Fellows and 1 PhD Fellow.
Clinical Informatics and Telehealth
The primary goal of the informatics and telemedicine core is to employ state-of-the-art informatics, telemedicine technology, and the MSCoE website, to improve MS health care delivery. The VA has a integrated electronic health record and various data repositories are stored in the VHA Corporate Data Warehouse (CDW). MSCoE utilizes the CDW to maintain a national MS administrative data repository to understand the VHA care provided to veterans with MS. Data from the CDW have also served as an important resource to facilitate a wide range of veteran-focused MS research. This research has addressed clinical conditions like pain and obesity; health behaviors like smoking, alcohol use, and exercise as well as issues related to care delivery such as specialty care access, medication adherence, and appointment attendance.11-19
Monitoring the health of veterans with MS in the VA requires additional data not available in the CDW. To this end, we have developed the MS Surveillance Registry (MSSR), funded and maintained by the VA Office of Information Technology as part of their Veteran Integrated Registry Platform (VIRP). The purpose of the MSSR is to understand the unique characteristics and treatment patterns of veterans with MS in order to optimize their VHA care. HCPs input MS-specific clinical data on their patients into the MSSR, either through the MS Assessment Tool (MSAT) in the Computerized Patient Record System (CPRS) or through a secure online portal. Other data from existing databases from the CDW is also automatically fed into the MSSR. The MSSR continues to be developed and populated to serve as a resource for the future.
Neurologists, physiatrists, psychologists, and rehabilitation specialists can use telehealth to evaluate and treat veterans who have difficulty accessing outpatient clinics, either because of mobility limitations, or distance. Between 2012 and 2015, the VA MSCoE, together with the Epilepsy CoE and the Parkinson’s Disease Research and Clinical Centers in VISNs 5, 6 (mid-Atlantic) and 20 (Pacific Northwest) initiated an integrated teleneurology project. The goal of this project was to improve patient access to care at 4 tertiary and 12 regional VAMCs. A study team, with administrators and key clinical stakeholders, followed a traditional project management approach to design, plan, implement and evaluate an optimal model for communication and referrals with both live visits and telehealth (Table). Major outcomes of the project included: delivering subspecialty teleneurology to 47 patient sites, increasing interfacility consultation by 133% while reducing wait times by roughly 40%, and increasing telemedicine workload at these centers from 95 annual encounters in 2012 to 1,245 annual encounters in 2015 (Figure).
Today, telehealth for veterans with MS can be delivered to nearby VA facilities closer to their home, within their home, or anywhere else the veteran can use a cellphone or tablet. Telehealth visits can save travel time and expenses and optimize VA productivity and clinic use. The MSCoE and many of the MS regional programs are using telehealth for MS physician follow-up and therapies. The VA Office of Rural Health is also currently working with the MS network to use telehealth to increase access to physical therapy to those who have difficulty coming into clinic.
MSCoE Resources
The MSCoE is funded by VA Central Office through the Office of Specialty Care by Special Purpose funds. The directive specifies that funding for the regional and support programs is through Veterans Equitable Resource Allocation based on VISN and facility workload and complexity. Any research is funded separately through grants, some from VA R&D and others from other sources including the National Institutes of Health, the Patient Centered Outcome Research Institute, affiliated universities, the NMSS, the MS Society of Canada, the Consortium of MS Centers, foundations, and industry.
In 2019, MSCoE investigators received grants totaling > $18 million in funding. In-kind support also is provided by the PVA, the CMSC, the NMSS, and others. The first 3 foundations have been supporters since the inception of the MSCoE and have provided opportunities for the dissemination of education and research for HCPs, fellows, residents and medical students; travel; meeting rooms for MSCoE national meetings; exhibit space for HCP outreach; competitive research and educational grant support; programming and resources for veterans and significant others; organizational expertise; and opportunities for VA HCPs, veterans, and caregivers to learn how to navigate MS with others in the private sector.
Conclusion
The MSCoE had a tremendous impact on improving the consistency and quality of care for veterans with MS through clinical care, research, education and informatics and telehealth. Since opening in 2003, there has been an increase in the number of MS specialty clinics, served veterans with MS, and veterans receiving specialty neurologic and rehabilitation services in VA. Research programs in MS have been initiated to address key questions relevant to veterans with MS, including immunology, epidemiology, clinical care, and rehabilitation. Educational programs and products have evolved with technology and had a greater impact through partnerships with veteran and MS nonprofit organizations.
MSCoE strives to minimize impairment and maximize quality of life for veterans with MS by leveraging integrated electronic health records, data repositories, and telehealth services. These efforts have all improved veteran health, access and safety. We look forward to continuing into the next decade by bringing fresh ideas to the care of veterans with MS, their families and caregivers.
1. US Department of Veterans Affairs, Multiple Sclerosis Centers of Excellence. Multiple Sclerosis System of Care-VHA Directive 1101.06 and Multiple Sclerosis Centers of Excellence network facilities. https://www.va.gov/MS/veterans/find_a_clinic/index_clinics.asp. Updated February 26, 2020. Accessed March 6, 2020.
2. National MS Society. MS navigator program. https://www.nationalmssociety.org/For-Professionals/Clinical-Care/MS-Navigator-Program. Accessed March 6, 2020.
3. Wallin MT, Culpepper WJ, Campbell JD, et al. The prevalence of MS in the United States: a population-based estimate using health claims data. Neurology. 2019;92:e1029-e1040.
4. GBD 2016 Multiple Sclerosis Collaborators. Global, regional, and national burden of multiple sclerosis 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(3):269-285.
5. GBD 2016 Neurology Collaborators. Global, regional, and national burden of neurological disorders, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(5):459-480.
6. Solomon AJ, Bourdette DN, Cross AH, et al. The contemporary spectrum of multiple sclerosis misdiagnosis: a multicenter study. Neurology. 2016;87(13):1393-1399.
7. Spain R, Powers K, Murchison C, et al. Lipoic acid in secondary progressive MS: a randomized controlled pilot trial. Neurol Neuroimmunol Neuroinflamm. 2017;4(5):e374.
8. Martini DN, Zeeboer E, Hildebrand A, Fling BW, Hugos CL, Cameron MH. ADSTEP: preliminary investigation of a multicomponent walking aid program in people with multiple sclerosis. Arch Phys Med Rehabil. 2018;99(10):2050-2058.
9. Turner AP, Hartoonian N, Sloan AP, et al. Improving fatigue and depression in individuals with multiple sclerosis using telephone-administered physical activity counseling. J Consult Clin Psychol. 2016;84(4):297-309.
10. Haselkorn JK, Hughes C, Rae-Grant A, et al. Summary of comprehensive systematic review: rehabilitation in multiple sclerosis: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology. 2015;85(21):1896-1903.
11. Hirsh AT, Turner AP, Ehde DM, Haselkorn JK. Prevalence and impact of pain in multiple sclerosis: physical and psychologic contributors. Arch Phys Med Rehabil. 2009;90(4):646-651.
12. Khurana SR, Bamer AM, Turner AP, et al. The prevalence of overweight and obesity in veterans with multiple sclerosis. Am J Phys Med Rehabil. 2009;88(2):83-91.
13. Turner AP, Kivlahan DR, Kazis LE, Haselkorn JK. Smoking among veterans with multiple sclerosis: prevalence correlates, quit attempts, and unmet need for services. Arch Phys Med Rehabil. 2007;88(11):1394-1399.
14. Turner AP, Hawkins EJ, Haselkorn JK, Kivlahan DR. Alcohol misuse and multiple sclerosis. Arch Phys Med Rehabil. 2009;90(5):842-848.
15. Turner AP, Kivlahan DR, Haselkorn JK. Exercise and quality of life among people with multiple sclerosis: looking beyond physical functioning to mental health and participation in life. Arch Phys Med Rehabil. 2009;90(3):420-428.
16. Turner AP, Chapko MK, Yanez D, et al. Access to multiple sclerosis specialty care. PM R. 2013;5(12):1044-1050.
17. Gromisch ES, Turner AP, Leipertz SL, Beauvais J, Haselkorn JK. Risk factors for suboptimal medication adherence in persons with multiple sclerosis: development of an electronic health record-based explanatory model for disease-modifying therapy use [published online ahead of print, 2019 Dec 3]. Arch Phys Med Rehabil. 2019;S0003-9993(19)31430-3143.
18. Settle JR, Maloni H, Bedra M, Finkelstein J, Zhan M, Wallin M. Monitoring medication adherence in multiple sclerosis using a novel web-based tool. J Telemed Telecare. 2016;22:225-233.
19. Gromisch ES, Turner AP, Leipertz SL, Beauvais J, Haselkorn JK. Who is not coming to clinic? A predictive model of excessive missed appointments in persons with multiple sclerosis. Mult Scler Rel Dis. In Press.
1. US Department of Veterans Affairs, Multiple Sclerosis Centers of Excellence. Multiple Sclerosis System of Care-VHA Directive 1101.06 and Multiple Sclerosis Centers of Excellence network facilities. https://www.va.gov/MS/veterans/find_a_clinic/index_clinics.asp. Updated February 26, 2020. Accessed March 6, 2020.
2. National MS Society. MS navigator program. https://www.nationalmssociety.org/For-Professionals/Clinical-Care/MS-Navigator-Program. Accessed March 6, 2020.
3. Wallin MT, Culpepper WJ, Campbell JD, et al. The prevalence of MS in the United States: a population-based estimate using health claims data. Neurology. 2019;92:e1029-e1040.
4. GBD 2016 Multiple Sclerosis Collaborators. Global, regional, and national burden of multiple sclerosis 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(3):269-285.
5. GBD 2016 Neurology Collaborators. Global, regional, and national burden of neurological disorders, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(5):459-480.
6. Solomon AJ, Bourdette DN, Cross AH, et al. The contemporary spectrum of multiple sclerosis misdiagnosis: a multicenter study. Neurology. 2016;87(13):1393-1399.
7. Spain R, Powers K, Murchison C, et al. Lipoic acid in secondary progressive MS: a randomized controlled pilot trial. Neurol Neuroimmunol Neuroinflamm. 2017;4(5):e374.
8. Martini DN, Zeeboer E, Hildebrand A, Fling BW, Hugos CL, Cameron MH. ADSTEP: preliminary investigation of a multicomponent walking aid program in people with multiple sclerosis. Arch Phys Med Rehabil. 2018;99(10):2050-2058.
9. Turner AP, Hartoonian N, Sloan AP, et al. Improving fatigue and depression in individuals with multiple sclerosis using telephone-administered physical activity counseling. J Consult Clin Psychol. 2016;84(4):297-309.
10. Haselkorn JK, Hughes C, Rae-Grant A, et al. Summary of comprehensive systematic review: rehabilitation in multiple sclerosis: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology. 2015;85(21):1896-1903.
11. Hirsh AT, Turner AP, Ehde DM, Haselkorn JK. Prevalence and impact of pain in multiple sclerosis: physical and psychologic contributors. Arch Phys Med Rehabil. 2009;90(4):646-651.
12. Khurana SR, Bamer AM, Turner AP, et al. The prevalence of overweight and obesity in veterans with multiple sclerosis. Am J Phys Med Rehabil. 2009;88(2):83-91.
13. Turner AP, Kivlahan DR, Kazis LE, Haselkorn JK. Smoking among veterans with multiple sclerosis: prevalence correlates, quit attempts, and unmet need for services. Arch Phys Med Rehabil. 2007;88(11):1394-1399.
14. Turner AP, Hawkins EJ, Haselkorn JK, Kivlahan DR. Alcohol misuse and multiple sclerosis. Arch Phys Med Rehabil. 2009;90(5):842-848.
15. Turner AP, Kivlahan DR, Haselkorn JK. Exercise and quality of life among people with multiple sclerosis: looking beyond physical functioning to mental health and participation in life. Arch Phys Med Rehabil. 2009;90(3):420-428.
16. Turner AP, Chapko MK, Yanez D, et al. Access to multiple sclerosis specialty care. PM R. 2013;5(12):1044-1050.
17. Gromisch ES, Turner AP, Leipertz SL, Beauvais J, Haselkorn JK. Risk factors for suboptimal medication adherence in persons with multiple sclerosis: development of an electronic health record-based explanatory model for disease-modifying therapy use [published online ahead of print, 2019 Dec 3]. Arch Phys Med Rehabil. 2019;S0003-9993(19)31430-3143.
18. Settle JR, Maloni H, Bedra M, Finkelstein J, Zhan M, Wallin M. Monitoring medication adherence in multiple sclerosis using a novel web-based tool. J Telemed Telecare. 2016;22:225-233.
19. Gromisch ES, Turner AP, Leipertz SL, Beauvais J, Haselkorn JK. Who is not coming to clinic? A predictive model of excessive missed appointments in persons with multiple sclerosis. Mult Scler Rel Dis. In Press.
Multidisciplinary Management of a Patient With Multiple Sclerosis: Part 1. Neurologists’ and Physiatrists’ Perspectives
Multiple sclerosis (MS) is the most common progressive neurologic disease of young adults, affecting 350,000 to 400,000 people in the U.S.1 The disease most commonly presents with intermittent relapses and evolves to a progressive form. Common symptoms include weakness, sensory loss, vision disturbances, ataxia, bladder dysfunction, cognitive deficits, and fatigue. A thoughtful multidisciplinary approach is essential for patients with MS who live with an unpredictable disease, numerous secondary symptoms, and the fear of debilitating progression. The goal is to maintain good quality of life (QOL) for patients with MS.
This article responds to the issues presented by a young patient recently released from active-duty military service and illustrate the power of a team
approach to managing the care of patients with MS. The 3 sections are written from the perspectives of (1) neurologists and physiatrists; (2) nurse practitioners; and (3) psychologists and also represent contributions of each discipline toward the goal of maintaining QOL for patients with MS. Although these health care specialists are highlighted, many more were involved in the care of this patient and are not included due to space constraints.
Case Presentation
William is a 31-year-old African American man who began experiencing headaches, occasional imbalance, periods of confusion, and mental fogginess following discharge from active duty 5 years ago. William had been deployed to Afghanistan and was exposed to at least 1 improvised explosive device blast while there. He did not disclose to army physicians a 24-hour loss of vision in his right eye while driving a tactical vehicle in Kandahar, Afghanistan. The patient thought his vision changes were caused by stress and worried that he would be removed from patrol duties if he reported the problem. At the time of his discharge, William was diagnosed with mild traumatic brain injury from blast exposure.
After discharge, William sought care in the private sector but felt providers assumed all his symptoms were the result of depression or posttraumatic stress disorder. He began noticing problems at his new job: missing deadlines, forgetting conversations, and having difficulty making decisions. William’s gait became clumsy, and he occasionally tripped and ran into walls. He worried that his supervisor and colleagues would discover his problems, so he quit his job. William knew something was wrong and wanted a provider who would understand him. He decided to take advantage of the VA health care system and its promise of care for Operation Enduring Freedom/Operation Iraqi Freedom veterans. He had an initial evaluation with his primary care Patient Aligned Care Team (PACT), which noted deficits on his neurologic examination and referred him to the neurology clinic affiliated with the MS Centers of Excellence (MSCoE).2
William’s neurologic examination was significant for psychomotor slowing, memory loss, cerebellar ataxia, and lower extremity spasticity. Magnetic resonance imaging (MRI) of the brain and spinal cord were obtained as recommended by the Consortium of MS Centers guidelines.3 The MRI showed 12 high-frequency T2 lesions in the periventricular regions bilaterally and cerebellum. One lesion was gadolinium enhanced. Two additional high T2 lesions were noted in the upper cervical spinal cord. After ruling out mimics, William was diagnosed with relapsing remitting MS, based on McDonald Criteria.4 His Expanded Disability Status score was 3.0, and deficits were documented in the pyramidal, cerebellar, and cerebral functional systems.5 William’s history and symptoms, blood, and cerebrospinal fluid studies were consistent with the typical pattern of relapses and remissions with neurologic symptoms separated in space and time.
The neurologist gave William some context to the diagnosis. He noted the changing epidemiology of the disease and that African Americans are considered a highrisk group for rapid progression of MS symptoms.6-8 A progress note and MS Assessment Tool were completed in the Computerized Patient Record System (CPRS)—an annual requirement recommended by the Multiple Sclerosis System of Care Procedures.9
Symptom Management
All FDA-approved MS disease-modifying therapies (DMT) are available within the VA MSCoE network. After a discussion of risks and benefits with William, the neurologist recommended 2 options for therapy. One option was more aggressive and had the greatest efficacy in a randomized controlled trial, yet a higher risk for adverse events (AEs). The other option had modest efficacy and favorable long-term safety data. After further discussion with his neurologist, William indicated he wanted to avoid risks and preferred medication with a long track record for success and safety. He selected an injectable DMT.
William returned to the clinic 3 months later and reported no new or worsening neurologic symptoms and stated that he was “fine.” However, in a review of his MS symptoms, the neurologist discovered gait ataxia, bladder urgency, and constipation. On further questioning, William admitted to experiencing excessive fatigue, an inability to go to or stay asleep, and difficulty in finishing tasks. William also indicated that he had forgotten to take
his DMT as prescribed, had a fear of injecting himself, and had painful injection site reactions. The neurologist referred him for a bladder ultrasound and for urinalysis and urine cultures, as well as for more extensive cognitive testing with a neuropsychologist and for gait assessment with the physiatrist.
William reported 2 recent falls to the physiatrist, both occurring while walking on his lawn to get the mail, neither resulting in significant injury. He reported using walls and furniture to maintain balance at home. Although he continued to insist that he was fine, further questioning revealed that he at times avoided leaving home due to a fear of falling.
A focused physical examination consisting of an assessment of lower limb muscular strength, coordination, sensation, and spasticity helped identify issues that were causing his impaired gait. Additionally, the impact of changes in vision, cognition, and fatigue were explored, because they also contributed to falls and impacted use of mobility assistive devices.
William had normal strength except for mild weakness in his left ankle dorsiflexors, intact sensation, impaired heel-to-shin performance, and minimal resistance of his hip adductors. A wide base of support, short stride length, and a slow cadence characterized his gait. His average of two 25-foot walk tests was 15 seconds, and by the end of his second trial, he had mild foot drop.
Impairments in gait are typically multifactorial, so treatment plans often consider multiple issues. Because William was able to use a wide base of support to maintain his balance and quality of gait, it did not seem that spasticity was impairing his function. Therefore, an oral spasticity agent was not indicated, although a stretching program was started to prevent potential future complications related to spasticity.
An ankle-foot orthosis could address William’s foot drop. An assistive device, such as a cane or walker, could also help minimize falls associated with ataxia. It is important to screen patients for psychological impacts of loss of function and psychological barriers to the use of assistive devices; referral to a rehabilitation psychologist may be warranted. Last, William’s walking speed was slightly impaired. When speed of walking is a concern, patients might benefit from a trial of dalfampridine once walking safety has been optimized.
MS Care Models
Because MS is a dynamic disease, producing multifocal neurologic deficits and disability, a wide range of health care specialists are required to assist in MS care throughout the life of the patient. The neurologist is typically the principal caregiver, but referrals to rehabilitation specialists, psychologists, ophthalmologists, urologists, speech pathologists, wound specialists, and social workers are common. Multiple sclerosis advocacy groups within the U.S. frequently promote multidisciplinary care. Yet few attempts have been made to define multidisciplinary MS care models or to test their effectiveness. Like other chronic conditions, coordination and continuity of care for patients with MS are often suboptimal.
About 30,000 patients with MS use the VA health care system. Treatment takes place largely in outpatient clinics. Patients with MS require more visits per person than do all but a handful of other patient populations. Multiple sclerosis therapy includes complex and expensive pharmacologic agents as well as multidisciplinary medical and rehabilitation services and assistive technology. In 2003, after surveys showed wide and unexplained variations across the VA in the care of patients with MS, 2 MSCoE coordinating centers were established to improve access to MS specialty care, develop national standards of care, and implement those standards through a network of regional MS programs.
With input from the MSCoE and a network of more than 70 VA MS programs, the VA Central Office released a handbook for MS care in December 2009. The VA handbook Multiple Sclerosis System of Care Procedures is the first MS health care policy directive that has been created, outlining a comprehensive plan of care for patients with MS.9 The handbook describes the diagnostic and therapeutic health care services that are required by patients with MS, including primary care, MS specialty care, rehabilitation, palliative care, respite care, home care, long-term care, mental health care, social work services, telehealth services, and access to disease-modifying and symptomatic pharmacologic therapies.
According to the MS handbook, every patient with MS should receive an annual evaluation in which the care plan is reviewed with a provider who is knowledgeable about MS. The provider then completes the required MS Assessment Tool within the CPRS. The annual visit and MS Assessment Tool help to identify patients with MS, track medication AEs, and populate the VA national MS surveillance registry. Ideally, this evaluation takes place in
a face-to-face visit with a MS subspecialist. However, this requirement also could be satisfied by a visit with another provider knowledgeable about MS or through a video or telephone telehealth interview.
The location of care should be dictated by the needs of the patient and be as convenient as possible. To support this, a regional hub-and-spoke network has been outlined. Each VISN supports at least 1 MS regional program (hub site). The MS regional program team consists of a physician with MS expertise, a nurse, a social worker, and access to specialty care services. These teams lead and coordinate integrated MS care at the local medical center and assist in the care of patients with MS at remote facilities within the VISN.
Facilities without a MS regional program are designated as spoke sites that have a designated MS care coordinator to assist with care at that facility. Spoke sites work with the regional hub to deliver MS care to the local population. Consultations from the closest MS regional center may be provided by telephone, telehealth, or a live visit. The level of MS care for regional centers is influenced by the patient’s MS stage and the location. Different MS care models that incorporate more consultative and telehealth approaches may need to be developed for patients with MS in rural areas with limited access to specialists.
1. Anderson DW, Ellenberg JH, Leventhan CM, Reingold SC, Rodriguez M, Silberberg DH. Revised estimate of the prevalence of multiple sclerosis in the United States. Ann Neurol. 1992;31(3):333-336.
2. Klein S. The Veterans Health Administration: Implementing patient-centered medical homes in the nation’s largest integrated delivery system. Commonwealth Fund Website. http://www.commonwealthfund.org/publications/case-studies/2011/sep/va-medical-homes. Updated September 2011. Accessed February 27, 2015.
3. Simon JH, Li D, Traboulsee A, et al. Standardized MR imaging protocol for multiple sclerosis: Consortium of MS Centers consensus guidelines. AJNR Am J Neuroradiol. 2006;27(2):455-461.
4. Polman CH, Reingold SC, Banwell B, et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol. 2011;69(2):292-302.
5. Kurtzke JF. Rating neurological impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology. 1983;33(11):1444-1452.
6. Wallin MT, Culpepper WJ, Coffman P, et al; Veterans Affairs Multiple Sclerosis Centres of Excellence Epidemiology Group. The Gulf War era multiple sclerosis cohort: Age and incidence rates by race, sex and service. Brain. 2012;135(pt 6):1780-1785.
7. Langer-Gould A, Brara SM, Beaber BE, Zhang JL. Incidence of multiple sclerosis in
multiple racial and ethnic groups. Neurology. 2013;80(19):1734-1739.
8. Cree BA, Khan O, Bourdette D, et al. Clinical characteristics of African Americans vs Caucasian Americans with multiple sclerosis. Neurology. 2004;63(11):2039-2045.
9. U.S. Department of Veterans Affairs, Veterans Health Administration. Multiple Sclerosis System of Care Procedures. Washington, DC: Department of Veterans Affairs; 2009.
Multiple sclerosis (MS) is the most common progressive neurologic disease of young adults, affecting 350,000 to 400,000 people in the U.S.1 The disease most commonly presents with intermittent relapses and evolves to a progressive form. Common symptoms include weakness, sensory loss, vision disturbances, ataxia, bladder dysfunction, cognitive deficits, and fatigue. A thoughtful multidisciplinary approach is essential for patients with MS who live with an unpredictable disease, numerous secondary symptoms, and the fear of debilitating progression. The goal is to maintain good quality of life (QOL) for patients with MS.
This article responds to the issues presented by a young patient recently released from active-duty military service and illustrate the power of a team
approach to managing the care of patients with MS. The 3 sections are written from the perspectives of (1) neurologists and physiatrists; (2) nurse practitioners; and (3) psychologists and also represent contributions of each discipline toward the goal of maintaining QOL for patients with MS. Although these health care specialists are highlighted, many more were involved in the care of this patient and are not included due to space constraints.
Case Presentation
William is a 31-year-old African American man who began experiencing headaches, occasional imbalance, periods of confusion, and mental fogginess following discharge from active duty 5 years ago. William had been deployed to Afghanistan and was exposed to at least 1 improvised explosive device blast while there. He did not disclose to army physicians a 24-hour loss of vision in his right eye while driving a tactical vehicle in Kandahar, Afghanistan. The patient thought his vision changes were caused by stress and worried that he would be removed from patrol duties if he reported the problem. At the time of his discharge, William was diagnosed with mild traumatic brain injury from blast exposure.
After discharge, William sought care in the private sector but felt providers assumed all his symptoms were the result of depression or posttraumatic stress disorder. He began noticing problems at his new job: missing deadlines, forgetting conversations, and having difficulty making decisions. William’s gait became clumsy, and he occasionally tripped and ran into walls. He worried that his supervisor and colleagues would discover his problems, so he quit his job. William knew something was wrong and wanted a provider who would understand him. He decided to take advantage of the VA health care system and its promise of care for Operation Enduring Freedom/Operation Iraqi Freedom veterans. He had an initial evaluation with his primary care Patient Aligned Care Team (PACT), which noted deficits on his neurologic examination and referred him to the neurology clinic affiliated with the MS Centers of Excellence (MSCoE).2
William’s neurologic examination was significant for psychomotor slowing, memory loss, cerebellar ataxia, and lower extremity spasticity. Magnetic resonance imaging (MRI) of the brain and spinal cord were obtained as recommended by the Consortium of MS Centers guidelines.3 The MRI showed 12 high-frequency T2 lesions in the periventricular regions bilaterally and cerebellum. One lesion was gadolinium enhanced. Two additional high T2 lesions were noted in the upper cervical spinal cord. After ruling out mimics, William was diagnosed with relapsing remitting MS, based on McDonald Criteria.4 His Expanded Disability Status score was 3.0, and deficits were documented in the pyramidal, cerebellar, and cerebral functional systems.5 William’s history and symptoms, blood, and cerebrospinal fluid studies were consistent with the typical pattern of relapses and remissions with neurologic symptoms separated in space and time.
The neurologist gave William some context to the diagnosis. He noted the changing epidemiology of the disease and that African Americans are considered a highrisk group for rapid progression of MS symptoms.6-8 A progress note and MS Assessment Tool were completed in the Computerized Patient Record System (CPRS)—an annual requirement recommended by the Multiple Sclerosis System of Care Procedures.9
Symptom Management
All FDA-approved MS disease-modifying therapies (DMT) are available within the VA MSCoE network. After a discussion of risks and benefits with William, the neurologist recommended 2 options for therapy. One option was more aggressive and had the greatest efficacy in a randomized controlled trial, yet a higher risk for adverse events (AEs). The other option had modest efficacy and favorable long-term safety data. After further discussion with his neurologist, William indicated he wanted to avoid risks and preferred medication with a long track record for success and safety. He selected an injectable DMT.
William returned to the clinic 3 months later and reported no new or worsening neurologic symptoms and stated that he was “fine.” However, in a review of his MS symptoms, the neurologist discovered gait ataxia, bladder urgency, and constipation. On further questioning, William admitted to experiencing excessive fatigue, an inability to go to or stay asleep, and difficulty in finishing tasks. William also indicated that he had forgotten to take
his DMT as prescribed, had a fear of injecting himself, and had painful injection site reactions. The neurologist referred him for a bladder ultrasound and for urinalysis and urine cultures, as well as for more extensive cognitive testing with a neuropsychologist and for gait assessment with the physiatrist.
William reported 2 recent falls to the physiatrist, both occurring while walking on his lawn to get the mail, neither resulting in significant injury. He reported using walls and furniture to maintain balance at home. Although he continued to insist that he was fine, further questioning revealed that he at times avoided leaving home due to a fear of falling.
A focused physical examination consisting of an assessment of lower limb muscular strength, coordination, sensation, and spasticity helped identify issues that were causing his impaired gait. Additionally, the impact of changes in vision, cognition, and fatigue were explored, because they also contributed to falls and impacted use of mobility assistive devices.
William had normal strength except for mild weakness in his left ankle dorsiflexors, intact sensation, impaired heel-to-shin performance, and minimal resistance of his hip adductors. A wide base of support, short stride length, and a slow cadence characterized his gait. His average of two 25-foot walk tests was 15 seconds, and by the end of his second trial, he had mild foot drop.
Impairments in gait are typically multifactorial, so treatment plans often consider multiple issues. Because William was able to use a wide base of support to maintain his balance and quality of gait, it did not seem that spasticity was impairing his function. Therefore, an oral spasticity agent was not indicated, although a stretching program was started to prevent potential future complications related to spasticity.
An ankle-foot orthosis could address William’s foot drop. An assistive device, such as a cane or walker, could also help minimize falls associated with ataxia. It is important to screen patients for psychological impacts of loss of function and psychological barriers to the use of assistive devices; referral to a rehabilitation psychologist may be warranted. Last, William’s walking speed was slightly impaired. When speed of walking is a concern, patients might benefit from a trial of dalfampridine once walking safety has been optimized.
MS Care Models
Because MS is a dynamic disease, producing multifocal neurologic deficits and disability, a wide range of health care specialists are required to assist in MS care throughout the life of the patient. The neurologist is typically the principal caregiver, but referrals to rehabilitation specialists, psychologists, ophthalmologists, urologists, speech pathologists, wound specialists, and social workers are common. Multiple sclerosis advocacy groups within the U.S. frequently promote multidisciplinary care. Yet few attempts have been made to define multidisciplinary MS care models or to test their effectiveness. Like other chronic conditions, coordination and continuity of care for patients with MS are often suboptimal.
About 30,000 patients with MS use the VA health care system. Treatment takes place largely in outpatient clinics. Patients with MS require more visits per person than do all but a handful of other patient populations. Multiple sclerosis therapy includes complex and expensive pharmacologic agents as well as multidisciplinary medical and rehabilitation services and assistive technology. In 2003, after surveys showed wide and unexplained variations across the VA in the care of patients with MS, 2 MSCoE coordinating centers were established to improve access to MS specialty care, develop national standards of care, and implement those standards through a network of regional MS programs.
With input from the MSCoE and a network of more than 70 VA MS programs, the VA Central Office released a handbook for MS care in December 2009. The VA handbook Multiple Sclerosis System of Care Procedures is the first MS health care policy directive that has been created, outlining a comprehensive plan of care for patients with MS.9 The handbook describes the diagnostic and therapeutic health care services that are required by patients with MS, including primary care, MS specialty care, rehabilitation, palliative care, respite care, home care, long-term care, mental health care, social work services, telehealth services, and access to disease-modifying and symptomatic pharmacologic therapies.
According to the MS handbook, every patient with MS should receive an annual evaluation in which the care plan is reviewed with a provider who is knowledgeable about MS. The provider then completes the required MS Assessment Tool within the CPRS. The annual visit and MS Assessment Tool help to identify patients with MS, track medication AEs, and populate the VA national MS surveillance registry. Ideally, this evaluation takes place in
a face-to-face visit with a MS subspecialist. However, this requirement also could be satisfied by a visit with another provider knowledgeable about MS or through a video or telephone telehealth interview.
The location of care should be dictated by the needs of the patient and be as convenient as possible. To support this, a regional hub-and-spoke network has been outlined. Each VISN supports at least 1 MS regional program (hub site). The MS regional program team consists of a physician with MS expertise, a nurse, a social worker, and access to specialty care services. These teams lead and coordinate integrated MS care at the local medical center and assist in the care of patients with MS at remote facilities within the VISN.
Facilities without a MS regional program are designated as spoke sites that have a designated MS care coordinator to assist with care at that facility. Spoke sites work with the regional hub to deliver MS care to the local population. Consultations from the closest MS regional center may be provided by telephone, telehealth, or a live visit. The level of MS care for regional centers is influenced by the patient’s MS stage and the location. Different MS care models that incorporate more consultative and telehealth approaches may need to be developed for patients with MS in rural areas with limited access to specialists.
Multiple sclerosis (MS) is the most common progressive neurologic disease of young adults, affecting 350,000 to 400,000 people in the U.S.1 The disease most commonly presents with intermittent relapses and evolves to a progressive form. Common symptoms include weakness, sensory loss, vision disturbances, ataxia, bladder dysfunction, cognitive deficits, and fatigue. A thoughtful multidisciplinary approach is essential for patients with MS who live with an unpredictable disease, numerous secondary symptoms, and the fear of debilitating progression. The goal is to maintain good quality of life (QOL) for patients with MS.
This article responds to the issues presented by a young patient recently released from active-duty military service and illustrate the power of a team
approach to managing the care of patients with MS. The 3 sections are written from the perspectives of (1) neurologists and physiatrists; (2) nurse practitioners; and (3) psychologists and also represent contributions of each discipline toward the goal of maintaining QOL for patients with MS. Although these health care specialists are highlighted, many more were involved in the care of this patient and are not included due to space constraints.
Case Presentation
William is a 31-year-old African American man who began experiencing headaches, occasional imbalance, periods of confusion, and mental fogginess following discharge from active duty 5 years ago. William had been deployed to Afghanistan and was exposed to at least 1 improvised explosive device blast while there. He did not disclose to army physicians a 24-hour loss of vision in his right eye while driving a tactical vehicle in Kandahar, Afghanistan. The patient thought his vision changes were caused by stress and worried that he would be removed from patrol duties if he reported the problem. At the time of his discharge, William was diagnosed with mild traumatic brain injury from blast exposure.
After discharge, William sought care in the private sector but felt providers assumed all his symptoms were the result of depression or posttraumatic stress disorder. He began noticing problems at his new job: missing deadlines, forgetting conversations, and having difficulty making decisions. William’s gait became clumsy, and he occasionally tripped and ran into walls. He worried that his supervisor and colleagues would discover his problems, so he quit his job. William knew something was wrong and wanted a provider who would understand him. He decided to take advantage of the VA health care system and its promise of care for Operation Enduring Freedom/Operation Iraqi Freedom veterans. He had an initial evaluation with his primary care Patient Aligned Care Team (PACT), which noted deficits on his neurologic examination and referred him to the neurology clinic affiliated with the MS Centers of Excellence (MSCoE).2
William’s neurologic examination was significant for psychomotor slowing, memory loss, cerebellar ataxia, and lower extremity spasticity. Magnetic resonance imaging (MRI) of the brain and spinal cord were obtained as recommended by the Consortium of MS Centers guidelines.3 The MRI showed 12 high-frequency T2 lesions in the periventricular regions bilaterally and cerebellum. One lesion was gadolinium enhanced. Two additional high T2 lesions were noted in the upper cervical spinal cord. After ruling out mimics, William was diagnosed with relapsing remitting MS, based on McDonald Criteria.4 His Expanded Disability Status score was 3.0, and deficits were documented in the pyramidal, cerebellar, and cerebral functional systems.5 William’s history and symptoms, blood, and cerebrospinal fluid studies were consistent with the typical pattern of relapses and remissions with neurologic symptoms separated in space and time.
The neurologist gave William some context to the diagnosis. He noted the changing epidemiology of the disease and that African Americans are considered a highrisk group for rapid progression of MS symptoms.6-8 A progress note and MS Assessment Tool were completed in the Computerized Patient Record System (CPRS)—an annual requirement recommended by the Multiple Sclerosis System of Care Procedures.9
Symptom Management
All FDA-approved MS disease-modifying therapies (DMT) are available within the VA MSCoE network. After a discussion of risks and benefits with William, the neurologist recommended 2 options for therapy. One option was more aggressive and had the greatest efficacy in a randomized controlled trial, yet a higher risk for adverse events (AEs). The other option had modest efficacy and favorable long-term safety data. After further discussion with his neurologist, William indicated he wanted to avoid risks and preferred medication with a long track record for success and safety. He selected an injectable DMT.
William returned to the clinic 3 months later and reported no new or worsening neurologic symptoms and stated that he was “fine.” However, in a review of his MS symptoms, the neurologist discovered gait ataxia, bladder urgency, and constipation. On further questioning, William admitted to experiencing excessive fatigue, an inability to go to or stay asleep, and difficulty in finishing tasks. William also indicated that he had forgotten to take
his DMT as prescribed, had a fear of injecting himself, and had painful injection site reactions. The neurologist referred him for a bladder ultrasound and for urinalysis and urine cultures, as well as for more extensive cognitive testing with a neuropsychologist and for gait assessment with the physiatrist.
William reported 2 recent falls to the physiatrist, both occurring while walking on his lawn to get the mail, neither resulting in significant injury. He reported using walls and furniture to maintain balance at home. Although he continued to insist that he was fine, further questioning revealed that he at times avoided leaving home due to a fear of falling.
A focused physical examination consisting of an assessment of lower limb muscular strength, coordination, sensation, and spasticity helped identify issues that were causing his impaired gait. Additionally, the impact of changes in vision, cognition, and fatigue were explored, because they also contributed to falls and impacted use of mobility assistive devices.
William had normal strength except for mild weakness in his left ankle dorsiflexors, intact sensation, impaired heel-to-shin performance, and minimal resistance of his hip adductors. A wide base of support, short stride length, and a slow cadence characterized his gait. His average of two 25-foot walk tests was 15 seconds, and by the end of his second trial, he had mild foot drop.
Impairments in gait are typically multifactorial, so treatment plans often consider multiple issues. Because William was able to use a wide base of support to maintain his balance and quality of gait, it did not seem that spasticity was impairing his function. Therefore, an oral spasticity agent was not indicated, although a stretching program was started to prevent potential future complications related to spasticity.
An ankle-foot orthosis could address William’s foot drop. An assistive device, such as a cane or walker, could also help minimize falls associated with ataxia. It is important to screen patients for psychological impacts of loss of function and psychological barriers to the use of assistive devices; referral to a rehabilitation psychologist may be warranted. Last, William’s walking speed was slightly impaired. When speed of walking is a concern, patients might benefit from a trial of dalfampridine once walking safety has been optimized.
MS Care Models
Because MS is a dynamic disease, producing multifocal neurologic deficits and disability, a wide range of health care specialists are required to assist in MS care throughout the life of the patient. The neurologist is typically the principal caregiver, but referrals to rehabilitation specialists, psychologists, ophthalmologists, urologists, speech pathologists, wound specialists, and social workers are common. Multiple sclerosis advocacy groups within the U.S. frequently promote multidisciplinary care. Yet few attempts have been made to define multidisciplinary MS care models or to test their effectiveness. Like other chronic conditions, coordination and continuity of care for patients with MS are often suboptimal.
About 30,000 patients with MS use the VA health care system. Treatment takes place largely in outpatient clinics. Patients with MS require more visits per person than do all but a handful of other patient populations. Multiple sclerosis therapy includes complex and expensive pharmacologic agents as well as multidisciplinary medical and rehabilitation services and assistive technology. In 2003, after surveys showed wide and unexplained variations across the VA in the care of patients with MS, 2 MSCoE coordinating centers were established to improve access to MS specialty care, develop national standards of care, and implement those standards through a network of regional MS programs.
With input from the MSCoE and a network of more than 70 VA MS programs, the VA Central Office released a handbook for MS care in December 2009. The VA handbook Multiple Sclerosis System of Care Procedures is the first MS health care policy directive that has been created, outlining a comprehensive plan of care for patients with MS.9 The handbook describes the diagnostic and therapeutic health care services that are required by patients with MS, including primary care, MS specialty care, rehabilitation, palliative care, respite care, home care, long-term care, mental health care, social work services, telehealth services, and access to disease-modifying and symptomatic pharmacologic therapies.
According to the MS handbook, every patient with MS should receive an annual evaluation in which the care plan is reviewed with a provider who is knowledgeable about MS. The provider then completes the required MS Assessment Tool within the CPRS. The annual visit and MS Assessment Tool help to identify patients with MS, track medication AEs, and populate the VA national MS surveillance registry. Ideally, this evaluation takes place in
a face-to-face visit with a MS subspecialist. However, this requirement also could be satisfied by a visit with another provider knowledgeable about MS or through a video or telephone telehealth interview.
The location of care should be dictated by the needs of the patient and be as convenient as possible. To support this, a regional hub-and-spoke network has been outlined. Each VISN supports at least 1 MS regional program (hub site). The MS regional program team consists of a physician with MS expertise, a nurse, a social worker, and access to specialty care services. These teams lead and coordinate integrated MS care at the local medical center and assist in the care of patients with MS at remote facilities within the VISN.
Facilities without a MS regional program are designated as spoke sites that have a designated MS care coordinator to assist with care at that facility. Spoke sites work with the regional hub to deliver MS care to the local population. Consultations from the closest MS regional center may be provided by telephone, telehealth, or a live visit. The level of MS care for regional centers is influenced by the patient’s MS stage and the location. Different MS care models that incorporate more consultative and telehealth approaches may need to be developed for patients with MS in rural areas with limited access to specialists.
1. Anderson DW, Ellenberg JH, Leventhan CM, Reingold SC, Rodriguez M, Silberberg DH. Revised estimate of the prevalence of multiple sclerosis in the United States. Ann Neurol. 1992;31(3):333-336.
2. Klein S. The Veterans Health Administration: Implementing patient-centered medical homes in the nation’s largest integrated delivery system. Commonwealth Fund Website. http://www.commonwealthfund.org/publications/case-studies/2011/sep/va-medical-homes. Updated September 2011. Accessed February 27, 2015.
3. Simon JH, Li D, Traboulsee A, et al. Standardized MR imaging protocol for multiple sclerosis: Consortium of MS Centers consensus guidelines. AJNR Am J Neuroradiol. 2006;27(2):455-461.
4. Polman CH, Reingold SC, Banwell B, et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol. 2011;69(2):292-302.
5. Kurtzke JF. Rating neurological impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology. 1983;33(11):1444-1452.
6. Wallin MT, Culpepper WJ, Coffman P, et al; Veterans Affairs Multiple Sclerosis Centres of Excellence Epidemiology Group. The Gulf War era multiple sclerosis cohort: Age and incidence rates by race, sex and service. Brain. 2012;135(pt 6):1780-1785.
7. Langer-Gould A, Brara SM, Beaber BE, Zhang JL. Incidence of multiple sclerosis in
multiple racial and ethnic groups. Neurology. 2013;80(19):1734-1739.
8. Cree BA, Khan O, Bourdette D, et al. Clinical characteristics of African Americans vs Caucasian Americans with multiple sclerosis. Neurology. 2004;63(11):2039-2045.
9. U.S. Department of Veterans Affairs, Veterans Health Administration. Multiple Sclerosis System of Care Procedures. Washington, DC: Department of Veterans Affairs; 2009.
1. Anderson DW, Ellenberg JH, Leventhan CM, Reingold SC, Rodriguez M, Silberberg DH. Revised estimate of the prevalence of multiple sclerosis in the United States. Ann Neurol. 1992;31(3):333-336.
2. Klein S. The Veterans Health Administration: Implementing patient-centered medical homes in the nation’s largest integrated delivery system. Commonwealth Fund Website. http://www.commonwealthfund.org/publications/case-studies/2011/sep/va-medical-homes. Updated September 2011. Accessed February 27, 2015.
3. Simon JH, Li D, Traboulsee A, et al. Standardized MR imaging protocol for multiple sclerosis: Consortium of MS Centers consensus guidelines. AJNR Am J Neuroradiol. 2006;27(2):455-461.
4. Polman CH, Reingold SC, Banwell B, et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol. 2011;69(2):292-302.
5. Kurtzke JF. Rating neurological impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology. 1983;33(11):1444-1452.
6. Wallin MT, Culpepper WJ, Coffman P, et al; Veterans Affairs Multiple Sclerosis Centres of Excellence Epidemiology Group. The Gulf War era multiple sclerosis cohort: Age and incidence rates by race, sex and service. Brain. 2012;135(pt 6):1780-1785.
7. Langer-Gould A, Brara SM, Beaber BE, Zhang JL. Incidence of multiple sclerosis in
multiple racial and ethnic groups. Neurology. 2013;80(19):1734-1739.
8. Cree BA, Khan O, Bourdette D, et al. Clinical characteristics of African Americans vs Caucasian Americans with multiple sclerosis. Neurology. 2004;63(11):2039-2045.
9. U.S. Department of Veterans Affairs, Veterans Health Administration. Multiple Sclerosis System of Care Procedures. Washington, DC: Department of Veterans Affairs; 2009.