The presence and burden of cognitive issues: discordance between the perception of neurologists and people living with multiple sclerosis.

cognitive issues multiple sclerosis neurologists perception plwMS

Journal

European journal of neurology
ISSN: 1468-1331
Titre abrégé: Eur J Neurol
Pays: England
ID NLM: 9506311

Informations de publication

Date de publication:
18 Mar 2024
Historique:
revised: 18 12 2023
received: 26 09 2023
accepted: 24 01 2024
medline: 19 3 2024
pubmed: 19 3 2024
entrez: 19 3 2024
Statut: aheadofprint

Résumé

Cognitive impairment is a common symptom of multiple sclerosis (MS) and occurs in more than 40% of people living with MS (plwMS). No real-world study has assessed the perception of neurologists and plwMS on cognitive issues. Using data from the 2011-2019 Adelphi MS Disease Specific Programme database, this real-world, retrospective, cross-sectional multi-cohort study included people aged ≥18 years with relapsing-remitting MS and secondary progressive MS from the United States, UK and the EU. Neurologists provided data on the patient record form for plwMS, with the same plwMS invited to voluntarily complete a patient self-completion form: a questionnaire about their experiences with MS. Of 25,374 plwMS, 4817 who provided information on cognitive and mood symptoms were included in the analysis. Of the plwMS, 68% and 59% reported feeling 'mentally fatigued' and having 'difficulty concentrating', respectively. Neurologists reported only 27% of plwMS as having 'difficulty concentrating' and 15% of plwMS as having 'short-/long-term memory problems'. Neurologists reported cognitive or mood symptoms as 'not experienced' by a higher percentage of participants with relapsing-remitting MS than secondary progressive MS. Of the plwMS who experienced 'difficulty concentrating', most had a concomitant feeling of being 'mentally fatigued' (52%), followed by 'feeling anxious or tense' (49%) and 'feeling depressed' (44%). In plwMS, caregivers reported 'difficulty concentrating' (16%) as the most common cognitive issue. A clear discordance was observed between neurologists and plwMS regarding the perception of the cognitive and neuropsychiatric issues. These results underline the under-perception of cognitive and emotional affective symptoms in plwMS during neurological consultations.

Sections du résumé

BACKGROUND AND PURPOSE OBJECTIVE
Cognitive impairment is a common symptom of multiple sclerosis (MS) and occurs in more than 40% of people living with MS (plwMS). No real-world study has assessed the perception of neurologists and plwMS on cognitive issues.
METHODS METHODS
Using data from the 2011-2019 Adelphi MS Disease Specific Programme database, this real-world, retrospective, cross-sectional multi-cohort study included people aged ≥18 years with relapsing-remitting MS and secondary progressive MS from the United States, UK and the EU. Neurologists provided data on the patient record form for plwMS, with the same plwMS invited to voluntarily complete a patient self-completion form: a questionnaire about their experiences with MS.
RESULTS RESULTS
Of 25,374 plwMS, 4817 who provided information on cognitive and mood symptoms were included in the analysis. Of the plwMS, 68% and 59% reported feeling 'mentally fatigued' and having 'difficulty concentrating', respectively. Neurologists reported only 27% of plwMS as having 'difficulty concentrating' and 15% of plwMS as having 'short-/long-term memory problems'. Neurologists reported cognitive or mood symptoms as 'not experienced' by a higher percentage of participants with relapsing-remitting MS than secondary progressive MS. Of the plwMS who experienced 'difficulty concentrating', most had a concomitant feeling of being 'mentally fatigued' (52%), followed by 'feeling anxious or tense' (49%) and 'feeling depressed' (44%). In plwMS, caregivers reported 'difficulty concentrating' (16%) as the most common cognitive issue.
CONCLUSION CONCLUSIONS
A clear discordance was observed between neurologists and plwMS regarding the perception of the cognitive and neuropsychiatric issues. These results underline the under-perception of cognitive and emotional affective symptoms in plwMS during neurological consultations.

Identifiants

pubmed: 38500270
doi: 10.1111/ene.16234
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

e16234

Subventions

Organisme : Novartis

Informations de copyright

© 2024 Novartis AG. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology.

Références

Walton C, King R, Rechtman L, et al. Rising prevalence of multiple sclerosis worldwide: insights from the Atlas of MS, third edition. Mult Scler. 2020;26:1816-1821.
DiGiuseppe G, Blair M, Morrow SA. Short report: prevalence of cognitive impairment in newly diagnosed relapsing-emitting multiple sclerosis. Int J MS Care. 2018;20:153-157.
Jelinek PL, Simpson S Jr, Brown CR, et al. Self-reported cognitive function in a large international cohort of people with multiple sclerosis: associations with lifestyle and other factors. Eur J Neurol. 2019;26:142-154.
McKay KA, Manouchehrinia A, Berrigan L, Fisk JD, Olsson T, Hillert J. Long-term cognitive outcomes in patients with pediatric-onset vs. adult-onset multiple sclerosis. JAMA Neurol. 2019;76:1028-1034.
Ruano L, Portaccio E, Goretti B, et al. Age and disability drive cognitive impairment in multiple sclerosis across disease subtypes. Mult Scler. 2017;23:1258-1267.
DeLuca GC, Yates RL, Beale H, Morrow SA. Cognitive impairment in multiple sclerosis: clinical, radiologic and pathologic insights. Brain Pathol. 2015;25:79-98.
Brochet B, Ruet A. Cognitive impairment in multiple sclerosis with regards to disease duration and clinical phenotypes. Front Neurol. 2019;10:261.
Oset M, Stasiolek M, Matysiak M. Cognitive dysfunction in the early stages of multiple sclerosis-how much and how important? Curr Neurol Neurosci Rep. 2020;20:22.
Amato MP, Ponziani G, Siracusa G, Sorbi S. Cognitive dysfunction in early-onset multiple sclerosis: a reappraisal after 10 years. Arch Neurol. 2001;58:1602-1606.
Bass AD, Van Wijmeersch B, Mayer L, et al. Effect of multiple sclerosis on daily activities, emotional well-being, and relationships: the global vs. MS survey. Int J MS Care. 2020;22:158-164.
Macias Islas MA, Ciampi E. Assessment and impact of cognitive impairment in multiple sclerosis: an overview. Biomedicine. 2019;7:22.
Kalb R, Beier M, Benedict RH, et al. Recommendations for cognitive screening and management in multiple sclerosis care. Mult Scler. 2018;24:1665-1680.
Penner I-K, Warnke C. Kognitive Störungen bei multipler Sklerose Cognitive impairment in multiple sclerosis. DGNeurologie. 2021;4:184-186.
Bakirtzis C, Ioannidis P, Messinis L, et al. The rationale for monitoring cognitive function in multiple sclerosis: practical issues for clinicians. Open Neurol J. 2018;12:31-40.
Ysrraelit MC, Fiol MP, Gaitan MI, Correale J. Quality of life assessment in multiple sclerosis: different perception between patients and neurologists. Front Neurol. 2017;8:729.
Thomas GA, Riegler KE, Bradson ML, O'Shea DU, Arnett PA. Relationship between subjective report and objective assessment of neurocognitive functioning in persons with multiple sclerosis. J Int Neuropsychol Soc. 2023;29:266-273.
Marin CE, Kfouri PP, Callegaro D, et al. Patients and neurologists have different perceptions of multiple sclerosis symptoms, care and challenges. Mult Scler Relat Disord. 2021;50:102806.
Heesen C, Haase R, Melzig S, et al. Perceptions on the value of bodily functions in multiple sclerosis. Acta Neurol Scand. 2018;137:356-362.
Celius EG, Thompson H, Pontaga M, et al. Disease progression in multiple sclerosis: a literature review exploring patient perspectives. Patient Prefer Adherence. 2021;15:15-27.
Figved N, Myhr KM, Larsen JP, Aarsland D. Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms. J Neurol Neurosurg Psychiatry. 2007;78:1097-1102.
Kremenchutzky M, Walt L. Perceptions of health status in multiple sclerosis patients and their doctors. Can J Neurol Sci. 2013;40:210-218.
Yigit P, Acikgoz A, Mehdiyev Z, Dayi A, Ozakbas S. The relationship between cognition, depression, fatigue, and disability in patients with multiple sclerosis. Ir J Med Sci. 2021;190:1129-1136.
Morrow SA, Rosehart H, Pantazopoulos K. Anxiety and depressive symptoms are associated with worse performance on objective cognitive tests in MS. J Neuropsychiatry Clin Neurosci. 2016;28:118-123.
Benedict RH, Munschauer F, Linn R, et al. Screening for multiple sclerosis cognitive impairment using a self-administered 15-item questionnaire. Mult Scler. 2003;9:95-101.
O'Brien A, Gaudino-Goering E, Shawaryn M, Komaroff E, Moore NB, DeLuca J. Relationship of the multiple sclerosis neuropsychological questionnaire (MSNQ) to functional, emotional, and neuropsychological outcomes. Arch Clin Neuropsychol. 2007;22:933-948.
Tunmore J, Kontou E, Moghaddam N, Hufton L, Das NR. The association between the multiple sclerosis screening questionnaire and objective measures of cognition: a systematic literature review and meta-analysis. J Clin Exp Neuropsychol. 2023;45:197-217.
Kinsinger SW, Lattie E, Mohr DC. Relationship between depression, fatigue, subjective cognitive impairment, and objective neuropsychological functioning in patients with multiple sclerosis. Neuropsychology. 2010;24:573-580.
Strober LB, Binder A, Nikelshpur OM, Chiaravalloti N, DeLuca J. The perceived deficits questionnaire: perception, deficit, or distress? Int J MS Care. 2016;18:183-190.
Eriksson J, Kobelt G, Gannedahl M, Berg J. Association between disability, cognition, fatigue, EQ-5D-3L domains, and utilities estimated with different Western European value sets in patients with multiple sclerosis. Value Health. 2019;22:231-238.
Fidao A, De Livera A, Nag N, Neate S, Jelinek GA, Simpson-Yap S. Depression mediates the relationship between fatigue and mental health-related quality of life in multiple sclerosis. Mult Scler Relat Disord. 2021;47:102620.
Kobelt G, Thompson A, Berg J, et al. New insights into the burden and costs of multiple sclerosis in Europe. Mult Scler. 2017;23:1123-1136.
Clemens L, Langdon D. How does cognition relate to employment in multiple sclerosis? A systematic review. Mult Scler Relat Disord. 2018;26:183-191.
Opara JBW. Quality of life and burden in caregivers of multiple sclerosis patients. Physiother Health Act. 2018;1:9-16.
Sarhana AA, El-Sharkawy KA, Mahmoudy AM, Hashima NA. Burden of multiple sclerosis: impact on the patient, family and society. Mult Scler Relat Disord. 2022;63:103864.
Maguire R, Maguire P. Caregiver burden in multiple sclerosis: recent trends and future directions. Curr Neurol Neurosci Rep. 2020;20:18.
Guyatt GH, Ferrans CE, Halyard MY, et al. Exploration of the value of health-related quality-of-life information from clinical research and into clinical practice. Mayo Clin Proc. 2007;82:1229-1239.
Goverover Y, Chiaravalloti N, Genova H, DeLuca J. A randomized controlled trial to treat impaired learning and memory in multiple sclerosis: the self-GEN trial. Mult Scler. 2018;24:1096-1104.
Goverover Y, Basso M, Wood H, Chiaravalloti N, DeLuca J. Examining the benefits of combining two learning strategies on recall of functional information in persons with multiple sclerosis. Mult Scler. 2011;17:1488-1497.
Chiaravalloti ND, Wylie G, Leavitt V, Deluca J. Increased cerebral activation after behavioral treatment for memory deficits in MS. J Neurol. 2012;259:1337-1346.
Baetge SJ, Filser M, Renner A, et al. Supporting brain health in multiple sclerosis: exploring the potential of neuroeducation combined with practical mindfulness exercises in the management of neuropsychological symptoms. J Neurol. 2023;270:3058-3071.
Meca-Lallana V, Gascon-Gimenez F, Ginestal-Lopez RC, et al. Cognitive impairment in multiple sclerosis: diagnosis and monitoring. Neurol Sci. 2021;42:5183-5193.

Auteurs

Iris-Katharina Penner (IK)

Department of Neurology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.

Virginia De Las Heras (VL)

Novartis Pharma AG, Basel, Switzerland.

Eddie Jones (E)

Adelphi Real World, Manchester, UK.

Suzannah Hetherington (S)

Novartis Ireland Limited, Dublin, Ireland.

Himanshu Karu (H)

Novartis Healthcare Pvt. Ltd., Hyderabad, India.

Rahul Chetlangia (R)

Novartis Healthcare Pvt. Ltd., Hyderabad, India.

Sourav Biswas (S)

Novartis Healthcare Pvt. Ltd., Hyderabad, India.

Patricia Dominguez Castro (PD)

Novartis Ireland Limited, Dublin, Ireland.

Carol Lines (C)

Novartis Pharma AG, Basel, Switzerland.

Classifications MeSH