Expert consensus recommendations for improving and standardising the assessment of patients with generalised myasthenia gravis

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

BACKGROUND: Regular and consistent disease assessment could provide a clearer picture of burden in generalised myasthenia gravis (gMG) and improve patient care; however, the use of assessment tools in practice lacks standardisation. This modified Delphi approach was taken to review current evidence on assessment tool use in gMG and develop expert-derived consensus recommendations for good practice.

METHODS: A European expert panel of 15 experienced gMG neurologists contributed to development of this consensus, four of whom formed a lead Sub-committee. The PICO (Population, Intervention, Control, Outcomes) framework was used to define six clinical questions on gMG assessment tools, a systematic literature review was conducted, and evidence-based statements were developed. According to a modified Delphi voting process, consensus was reached when ≥70% of the experts rated agreement with a statement as ≥8 on a scale of 1-10.

RESULTS: Eighteen expert- and evidence-based consensus statements based on six themes were developed. Key recommendations include: consistent use of the Myasthenia Gravis Activities of Daily Living score (MG-ADL) across clinical settings, followed by a simple question (e.g., Patient Acceptable Symptom State [PASS]) or scale to determine patient satisfaction in clinical practice; use of a Quantitative Myasthenia Gravis [QMG] or quality of life [QoL] assessment when the MG-ADL indicates disease worsening; and consideration of symptom state to determine the timing and frequency of recommended assessments. Expert panel consensus was reached on all 18 statements after two voting rounds.

CONCLUSIONS: This process provided evidence- and expert consensus-based recommendations for the use of objective and subjective assessment tools across gMG research and care to improve management and outcomes for patients.

Medienart:

E-Artikel

Erscheinungsjahr:

2024

Erschienen:

2024

Enthalten in:

Zur Gesamtaufnahme - year:2024

Enthalten in:

European journal of neurology - (2024) vom: 24. März, Seite e16280

Sprache:

Englisch

Beteiligte Personen:

Meisel, Andreas [VerfasserIn]
Saccà, Francesco [VerfasserIn]
Spillane, Jennifer [VerfasserIn]
Vissing, John [VerfasserIn]
MG Collegium Sub‐committee [VerfasserIn]

Links:

Volltext

Themen:

ADL
Consensus
Delphi study
Generalised
Journal Article
Myasthenia gravis
Patient care
QoL

Anmerkungen:

Date Revised 25.03.2024

published: Print-Electronic

Citation Status Publisher

doi:

10.1111/ene.16280

funding:

Förderinstitution / Projekttitel:

PPN (Katalog-ID):

NLM370129849