TY - JOUR
T1 - Don't be late! Timely identification of cognitive impairment in people with multiple sclerosis
T2 - a study protocol
AU - Don’t be late! consortium
AU - Waskowiak, Pauline T
AU - de Jong, Brigit A
AU - Uitdehaag, Bernard M J
AU - Saddal, Shalina R D
AU - Aarts, Jip
AU - Roovers, Aïda A M
AU - van Oirschot, Pim
AU - de Groot, Vincent
AU - Schaafsma, Frederieke G
AU - van der Hiele, Karin
AU - Ruitenberg, Marit F L
AU - Schoonheim, Menno M
AU - Widdershoven, Guy A M
AU - van der Veen, Sabina
AU - Schippers, Esther C F
AU - Klein, Martin
AU - Hulst, Hanneke E
N1 - Funding Information: This study is peer-reviewed and funded by the Dutch Research Council (NWO) as part of the Dutch National Research Agenda (NWA), file number NWA.1292.19.064. The funder does not have role in the design of the study and collection, analysis, and interpretation of the data and in writing the manuscript. Funding Information: Menno M. Schoonheim serves on the editorial board of Neurology, Multiple Sclerosis Journal and Frontiers in Neurology, receives research support from the Dutch MS Research Foundation, Eurostars-EUREKA, ARSEP, Amsterdam Neuroscience, MAGNIMS and ZonMW (Vidi grant, project number 09150172010056) and has served as a consultant for or received research support from Atara Biotherapeutics, Biogen, Celgene/Bristol Meyers Squibb, EIP, Sanofi, MedDay and Merck. Funding Information: Members of the Don’t be late! consortium are: • Participating sites – Casper E.P. van Munster, Amphia Ziekenhuis, Breda, The Netherlands. – Renske G. Wieberdink, MS Centrum Stedendriehoek, Gelre, The Netherlands. – Jolijn J. Kragt, Reinier de Graaf Ziekenhuis, Delft, The Netherlands. – Judith Schouten, Rijnstate, Arnhem, The Netherlands. – Erwin L.J. Hoogervorst, St. Antonius Ziekenhuis, Nieuwegein, The Netherlands. – Paul A.D. Bouma, Tergooi Ziekenhuizen, Hilversum, The Netherlands. – Floris G.C.M. De Kleermaeker, Viecuri Medisch Centrum, Venlo, The Netherlands. – Meike Holleman, Jeroen Bosch Ziekenhuis, ’s-Hertogenbosch, The Netherlands. – Sofie Geurts, Canisius Wilhelmina Ziekenhuis, Nijmegen, The Netherlands. – Christaan de Brabander, Admiraal de Ruyter Ziekenhuis, Vlissingen, The Netherlands. – Nynke F. Kalkers, OLVG, Amsterdam, The Netherlands. • Bram A.J. den Teuling, Pim van Oirschot, Sonja Cloosterman, Sherpa B.V., Nijmegen, The Netherlands. • Jos Vermeer, Personal Fitness Nederland (PFN) B.V., Eindhoven, The Netherlands. • Chris C. Schouten, Dutch MS Society, Den Donder, The Netherlands. • Gerard J. Stege, Merck B.V., Schiphol-Rijk, The Netherlands. • Thijs van‘t Hullenaar, Sanofi B.V., Genzyme Europe, Amsterdam, The Netherlands. We would like to thank all members of the consortium for their contribution to the project. Funding Information: Hanneke E. Hulst is an editor of the Multiple Sclerosis Journal controversies sections, receives research support from the Dutch MS Research Foundation and the Dutch Research Council. She has served as a consultant for or received research support from Atara Biotherapeutics, Biogen, Novartis, Celgene/Bristol Meyers Squibb, Sanofi Genzyme, MedDay and Merck BV. Publisher Copyright: © 2024, The Author(s).
PY - 2024/12
Y1 - 2024/12
N2 - BACKGROUND: Cognitive impairment occurs in up to 65% of people with multiple sclerosis (PwMS), negatively affecting daily functioning and health-related quality of life. In general, neuropsychological testing is not part of standard MS-care due to insufficient time and trained personnel. Consequently, a baseline assessment of cognitive functioning is often lacking, hampering early identification of cognitive decline and change within a person over time. To assess cognitive functioning in PwMS in a time-efficient manner, a BICAMS-based self-explanatory digital screening tool called the Multiple Screener ©, has recently been developed. The aim of the current study is to validate the Multiple Screener © in a representative sample of PwMS in the Netherlands. Additionally, we aim to investigate how cognitive functioning is related to psychological factors, and both work and societal participation. METHODS: In this cross-sectional multicentre study, 750 PwMS (aged 18-67 years) are included. To obtain a representative sample, PwMS are recruited via 12 hospitals across the Netherlands. They undergo assessment with the Minimal Assessment of Cognitive Functioning in MS (MACFIMS; reference-standard) and the Multiple Screener ©. Sensitivity, specificity, and predictive values for identifying (mild) cognitive impairment are determined in a subset of 300 participants. In a second step, the identified cut-off values are tested in an independent subset of at least 150 PwMS. Moreover, test-retest reliability for the Multiple Screener © is determined in 30 PwMS. Information on psychological and work-related factors is assessed with questionnaires. DISCUSSION: Validating the Multiple Screener © in PwMS and investigating cognition and its determinants will further facilitate early identification and adequate monitoring of cognitive decline in PwMS.
AB - BACKGROUND: Cognitive impairment occurs in up to 65% of people with multiple sclerosis (PwMS), negatively affecting daily functioning and health-related quality of life. In general, neuropsychological testing is not part of standard MS-care due to insufficient time and trained personnel. Consequently, a baseline assessment of cognitive functioning is often lacking, hampering early identification of cognitive decline and change within a person over time. To assess cognitive functioning in PwMS in a time-efficient manner, a BICAMS-based self-explanatory digital screening tool called the Multiple Screener ©, has recently been developed. The aim of the current study is to validate the Multiple Screener © in a representative sample of PwMS in the Netherlands. Additionally, we aim to investigate how cognitive functioning is related to psychological factors, and both work and societal participation. METHODS: In this cross-sectional multicentre study, 750 PwMS (aged 18-67 years) are included. To obtain a representative sample, PwMS are recruited via 12 hospitals across the Netherlands. They undergo assessment with the Minimal Assessment of Cognitive Functioning in MS (MACFIMS; reference-standard) and the Multiple Screener ©. Sensitivity, specificity, and predictive values for identifying (mild) cognitive impairment are determined in a subset of 300 participants. In a second step, the identified cut-off values are tested in an independent subset of at least 150 PwMS. Moreover, test-retest reliability for the Multiple Screener © is determined in 30 PwMS. Information on psychological and work-related factors is assessed with questionnaires. DISCUSSION: Validating the Multiple Screener © in PwMS and investigating cognition and its determinants will further facilitate early identification and adequate monitoring of cognitive decline in PwMS.
KW - Cognitive impairment
KW - Digital screening
KW - Health-related quality of life
KW - Innovation
KW - Multiple sclerosis
KW - Neuropsychology
UR - http://www.scopus.com/inward/record.url?scp=85182195365&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s12883-023-03495-x
DO - https://doi.org/10.1186/s12883-023-03495-x
M3 - Article
C2 - 38218777
SN - 1471-2377
VL - 24
SP - 26
JO - BMC Neurology
JF - BMC Neurology
IS - 1
M1 - 26
ER -