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Causes of symptom dissatisfaction in patients with generalized myasthenia gravis

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Abstract

Background

Patient-centered assessments have attracted increasing attention in the last decade in clinics and research. The purpose of this study was to examine the association between patients’ satisfaction with symptoms and several disease-specific and generic outcome measures in 100 patients with generalized myasthenia gravis (gMG).

Methods

In this cross-sectional study, patients with gMG followed at the Copenhagen Neuromuscular Center from October 2019 to June 2020 participated in one test. The patients completed commonly used MG-specific outcome measures and generic questionnaires for depression (Major Depression Inventory), comorbidities (Charlson Comorbidity Index), fatigue (Multidimensional Fatigue Inventory), overall health state (EQ-5D-3L), and satisfaction with MG treatment. The analyses were anchored in the Patient Acceptable Symptom State (PASS).

Results

N = 190 patients were screened for the study, and 100 patients were included. One-third of the patients reported dissatisfaction (negative PASS status) with the current symptom state. Increasing MG symptoms, fatigue, depression, low MG-related quality of life, and shorter disease duration were associated with negative PASS status. Age, sex, BMI, MG treatment, and comorbidity did not influence PASS status.

Conclusions

This study shows that dissatisfaction with the current symptom level is high in patients with gMG and that dissatisfaction is associated with disease severity, disease length, depression, fatigue, and lower MG-related quality of life. The results emphasize the importance of a patient-centered approach to MG treatment to optimize patient satisfaction. The PASS question was useful in this study to investigate the causes of symptom dissatisfaction in gMG.

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Author notes

  1. Linda Kahr Andersen and Anna Sofie Jakobsson authors contributed equally to this work.

Authors and Affiliations

  1. Copenhagen Neuromuscular Center, Department of Neurology, Copenhagen University Hospital, Section 8077, Rigshospitalet, Inge Lehmanns Vej 8, 2100, Copenhagen, Denmark

    Linda Kahr Andersen, Anna Sofie Jakobsson, Karoline Lolk Revsbech & John Vissing

  2. Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark

    Linda Kahr Andersen, Karoline Lolk Revsbech & John Vissing

Authors
  1. Linda Kahr Andersen
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  2. Anna Sofie Jakobsson
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  3. Karoline Lolk Revsbech
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  4. John Vissing
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Contributions

LKA and AJ have full access to all data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Concept and design: Vissing. Acquisition, analysis, or interpretation of data: All authors. Drafting of the manuscript: All authors. Critical revision of the manuscript for important intellectual content: All authors. Statistical analysis: Andersen. Obtained funding: Vissing. Administrative, technical, or material support: Andersen, Jakobsson. Supervision: Vissing.

Corresponding author

Correspondence to Linda Kahr Andersen.

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Conflicts of interest

Vissing received an unrestricted grant from Argenx to cover salary and patient transport expenses. The company had no influence on study design or in the writing of the manuscript. Andersen, Jakobsson, and Revsbech report no disclosures.

Ethics approval

The study was approved by the ethics committee of the Capital Region of Denmark.

Consent to participate

Informed consent was obtained from all included patients.

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Andersen, L.K., Jakobsson, A.S., Revsbech, K.L. et al. Causes of symptom dissatisfaction in patients with generalized myasthenia gravis. J Neurol 269, 3086–3093 (2022). https://doi.org/10.1007/s00415-021-10902-1

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  • DOI: https://doi.org/10.1007/s00415-021-10902-1

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