TY - JOUR
T1 - Identifying priority outcomes that influence selection of disease-modifying therapies in MS
AU - Day, Gregory S.
AU - Rae-Grant, Alexander
AU - Armstrong, Melissa J.
AU - Pringsheim, Tamara
AU - Cofield, Stacey S.
AU - Marrie, Ruth Ann
N1 - Funding Information:
G.S. Day is involved in clinical trials of antiamyloid agents (sponsored by Eli Lilly); serves as an ad hoc editor for DynaMed; receives research support from Avid Pharmaceuticals, Barnes Jewish Hospital Foundation, American Brain Foundation (Clinical Research Training Fellowship), and Eugene M. Johnson, Jr. (Weston Brain Institute Postdoctoral Fellowship); and holds stocks in ANI Pharmaceuticals. A. Rae-Grant is involved in a clinical trial of biotin for multiple sclerosis with MedDay (no personal remuneration); is a member of the level of evidence editorial board for Neurology®; receives publishing royalties for Handbook of Multiple Sclerosis (Springer Healthcare, 2010), Comprehensive Review of Clinical Neurology (Wolters Kluwer, 2012), 5-Minute Consult in Neurology (Wolters Kluwer, 2012), Comprehensive Review of Clinical Neurology, 2nd edition (LWW, 2016), Ultimate Review of Neurology (DEMOS, 2016), and Multiple Sclerosis and Related Disorders (DEMOS, 2014); serves as an ad hoc editor for DynaMed; and receives research support from NIH (CO-PI 4% effort FMRI as an imaging biomarker for preclinical Alzheimer’s disease). M.J. Armstrong serves as an evidence-based medicine methodology consultant for the American Academy of Neurology guideline program; is a member of the level of evidence editorial board for Neurology and related publications; holds a career development award from the Agency for Healthcare Research and Quality (AHRQ K08HS24159) investigating the effect of engaging patients in evidence-based guideline development; receives publishing royalties for Parkinson’s Disease: Improving Patient Care (Oxford University Press, 2014); has received writing/ speaking honoraria from Medscape CME; and receives research support from TBI Endpoints Development Initiative. T.M. Pringsheim serves on editorial boards of Neurology: Clinical Practice and Canadian Journal of Psychiatry; and receives research support from Canadian Institutes of Health Research, Sick Kids Foundation, and Alberta Mental Health Strategic Clinical Network. S.S. Cofield serves on scientific advisory boards for MedImmune, Orthotech Biotech, and US Department of Defense; serves as a consultant for Oxford University Press and American Shoulder and Elbow Society; and receives research support from Pfizer, American College of Rheumatology, and Consortium of MS Centers. R.A. Marrie serves on the editorial boards of Neurology and Multiple Sclerosis Journal; has received research support from Canadian Institutes of Health Research, Research Manitoba, Waugh Family Chair in Multiple Sclerosis, Multiple Sclerosis Society of Canada, National Multiple Sclerosis Society, Multiple Sclerosis Scientific Foundation, Consortium of Multiple Sclerosis Centers, Rx & D Health Research Foundation, and Crohn’s and Colitis Canada; and has conducted clinical trials funded by Sanofi-Aventis. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.
Funding Information:
This project used data from the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry. The NARCOMS Registry is a project of the Consortium of MS Centers (CMSC). NARCOMS is funded, in part, by the CMSC and the Foundation of the CMSC.
Publisher Copyright:
© © 2018 American Academy of Neurology.
PY - 2018/6/1
Y1 - 2018/6/1
N2 - Background Persons with multiple sclerosis (MS) may now choose from a broad array of approved disease-modifying treatments (DMTs). The priority that patients and practitioners assign to specific clinical outcomes is likely to influence the MS DMT selection process. Methods We invited 9,126 participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry and 18 members of the American Academy of Neurology MS DMT guideline development panel to complete a brief survey prioritizing outcomes of importance to MS DMT selection. The frequency of outcomes ranked as first, second, or third priority by respondents were compared across groups. Results A total of 2,056 of 9,126 (23.6%) NARCOMS participants and all 18 members of the MS DMT guideline development panel (100%) completed the survey. Reduced disability progression was identified as a priority by a majority of respondents in both groups. Guideline panelists tended to be more likely than persons with MS to prioritize relapse rate reduction (p = 0.055). Respondents from both groups commonly cited the "selection of therapies most likely to lead to improvements in quality of life measures, MS symptoms, and preservation of cognition" as top priorities in DMT selection; however, these priority outcomes were reported in fewer than 20% of clinical trials used to inform MS DMT guideline development. Conclusion Specific outcomes were defined by similar proportions of persons with MS and guideline panelists as priority outcomes influencing MS DMT selection. Several of these priority outcomes were not routinely reported in clinical trials, identifying areas for future evidence development.
AB - Background Persons with multiple sclerosis (MS) may now choose from a broad array of approved disease-modifying treatments (DMTs). The priority that patients and practitioners assign to specific clinical outcomes is likely to influence the MS DMT selection process. Methods We invited 9,126 participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry and 18 members of the American Academy of Neurology MS DMT guideline development panel to complete a brief survey prioritizing outcomes of importance to MS DMT selection. The frequency of outcomes ranked as first, second, or third priority by respondents were compared across groups. Results A total of 2,056 of 9,126 (23.6%) NARCOMS participants and all 18 members of the MS DMT guideline development panel (100%) completed the survey. Reduced disability progression was identified as a priority by a majority of respondents in both groups. Guideline panelists tended to be more likely than persons with MS to prioritize relapse rate reduction (p = 0.055). Respondents from both groups commonly cited the "selection of therapies most likely to lead to improvements in quality of life measures, MS symptoms, and preservation of cognition" as top priorities in DMT selection; however, these priority outcomes were reported in fewer than 20% of clinical trials used to inform MS DMT guideline development. Conclusion Specific outcomes were defined by similar proportions of persons with MS and guideline panelists as priority outcomes influencing MS DMT selection. Several of these priority outcomes were not routinely reported in clinical trials, identifying areas for future evidence development.
UR - http://www.scopus.com/inward/record.url?scp=85049613866&partnerID=8YFLogxK
U2 - 10.1212/CPJ.0000000000000449
DO - 10.1212/CPJ.0000000000000449
M3 - Article
C2 - 30105155
AN - SCOPUS:85049613866
VL - 8
SP - 179
EP - 185
JO - Neurology: Clinical Practice
JF - Neurology: Clinical Practice
SN - 2163-0402
IS - 3
ER -