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Table 1 SLR inclusion criteria

From: Systematic review of the patient burden of generalised myasthenia gravis in Europe, the Middle East, and Africa

Criteria

Include

Exclude

Population

• Patients with gMG (including subtypes such as AChR + , MuSK + , seronegative, LPR4 + , early-onset, late-onset, refractory, or crisis MG as well as biological sex)

• Mixed MG populations that exceed the prespecified proportion of gMG patients (> 80%)

• Patients with oMG

• Mixed MG populations that are ≤ 80% gMG patients

Intervention and comparator(s)

No restriction

NA

Outcomes

• Patient burden, measured using:

o Generic PROMs, e.g., EQ-5D (EQ-5D-3L, EQ-5D-5L), SF-36, WPAI, fatigue, treatment satisfaction, HADS, SF8, STAI, PTSD checklist, PHQ-9, FACIT fatigue scale, PGIS, PGIC

o Disease-specific PROMs, e.g. MG-ADL, MG-QoL15

o Disability related to uncontrolled symptoms

o Treatment-related comorbidities

o Factors associated with increased impact (e.g. gender, age, income)

• Patient experience/voice

o Psychological impact

o Fear

o Lifestyle adaptations – home, work/occupation, hobbies, travels

o Impact on family planning

• Economic burden/resource use

o Presenteeism/absenteeism

o Out-of-pocket treatment costs

o Hospital/ICU length of stay

o Number of outpatient visits

o Wider societal impact

o Access to specialist care

o Impact on family planning

NA

Study design

• Observational studies to include:

o Epidemiological studies

o Cohorts

o Cross sectional studies

o Patient surveys

o Registries

o Case series

• Government/regulatory reports

• Reports from other companies

• Studies conducted in a controlled, clinical setting

• Single case studies/reports

• PROM validation studies

• Narrative/systematic reviewsa

Geography

EMEA (data for mixed geographic region were of interest if at least one region of interest were included)

NA

Date of publication

No restriction for journal articles

Pre-2019 conference abstracts

Language of publication

English language publications or non-English language publications with an English abstract

NA

  1. aNarrative/systematic reviews were excluded as they do not report novel data; however, the reference lists of review articles were hand searched to identify any additional eligible primary studies that were not identified in electronic database searches