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Quality of life in individuals newly diagnosed with multiple sclerosis or clinically isolated syndrome

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Abstract

Background

Little is known about quality of life (QOL) at the time of multiple sclerosis (MS) or clinically isolated syndrome (CIS) diagnosis and how it evolves in the critical adjustment period immediately following a new diagnosis.

Objectives

To (1) describe QOL trajectory in the first year post-MS/CIS diagnosis and (2) examine associations of demographic and biopsychosocial factors with QOL at baseline and as it evolves over the first year post-MS/CIS diagnosis.

Methods

Participants were N = 250 individuals newly diagnosed with MS or CIS. Participants completed self-report assessments of QOL, demographics, and biopsychosocial factors at 1, 2, 3, 6, 9, and 12 months post-diagnosis using validated measures.

Results

At 1-month post-diagnosis, QOL M = 75.2/100 with subsequent assessments revealing consistent ratings on average. Modelling revealed a small number of variables that were predictive of QOL at baseline and/or change in QOL over time.

Conclusion

QOL in the first year post-MS/CIS diagnosis was, on average, high and stable. A subset of modifiable factors across the biopsychosocial spectrum was associated with baseline level of QOL and change in QOL over time. The stability in QOL suggests that patients can be assessed early after diagnosis for key variables that are predictive of both current and future QOL.

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Availability of data and materials

Study data can be requested via the corresponding author.

Code availability

Study analytic code can be requested via the corresponding author.

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Funding

Funding for this study was provided by the National Multiple Sclerosis Society (RG 4986A1/1).

Author information

Authors and Affiliations

  1. Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA

    Kevin N. Alschuler, Mark P. Jensen, Annette Wundes, Gloria von Geldern, Charles H. Bombardier & Dawn M. Ehde

  2. Department of Neurology, University of Washington, Seattle, WA, USA

    Kevin N. Alschuler, Annette Wundes & Gloria von Geldern

  3. Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA

    Daniel Whibley & Anna L. Kratz

  4. Epidemiology Group, School of Medicine, Medical Sciences and Nutrition, University of Aberdeen, Aberdeen, UK

    Daniel Whibley

  5. Swedish Neurosciences Institute, Seattle, WA, USA

    Peiqing Qian

  6. University of Washington, 1536 N 115th St, Box 358815, Seattle, WA, 98133, USA

    Kevin N. Alschuler

Authors
  1. Kevin N. Alschuler
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  2. Daniel Whibley
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  3. Anna L. Kratz
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  4. Mark P. Jensen
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  5. Annette Wundes
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  6. Gloria von Geldern
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  7. Peiqing Qian
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  8. Charles H. Bombardier
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  9. Dawn M. Ehde
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Contributions

All authors meet the criteria for authorship defined by ICMJE.

Corresponding author

Correspondence to Kevin N. Alschuler.

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Conflicts of interest

Dr. Wundes discloses relationships with Biogen, Alkermes, and AbbVie for research funding, and AbbVie and Biogen for advisory boards. The other authors have no disclosures.

Ethics approval

This study was approved by the University of Washington Human Subjects Division.

Consent to participate

Informed consent was obtained from all individual participants included in the study.

Consent for publication

Informed consent included agreement to the publication of study findings.

Supplementary Information

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Supplementary file1 (DOCX 25 KB)

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Alschuler, K.N., Whibley, D., Kratz, A.L. et al. Quality of life in individuals newly diagnosed with multiple sclerosis or clinically isolated syndrome. J Neurol 269, 2560–2572 (2022). https://doi.org/10.1007/s00415-021-10842-w

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  • DOI: https://doi.org/10.1007/s00415-021-10842-w

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