Questionnaire survey to systematically assess and characterize quality of life limitations in the context of Lambert-Eaton myasthenia syndrome (LEMS).

Questionnaire survey to systematically assess and characterize quality of life limitations in the context of Lambert-Eaton myasthenia syndrome (LEMS). - LEMS BoD

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00024527

Enrollment

Registered

2021-02-15

Start date

2021-03-09

Completion date

Unknown

Last updated

2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

G70 G73.1

Interventions

Group 1: Patients with LEMS are surveyed once about their quality of life using a questionnaire developed for this purpose.

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: Diagnosis of a LEMS

Exclusion criteria

Exclusion criteria: Under 18 years of age

Design outcomes

Primary

Measure	Time frame
Self-reported quality of life (questionnaire SF36). Summated scales for physical and psychological quality of life.	—

Secondary

Measure	Time frame
1. Mya Quality of Life 15 (Mya Qol 15), self-reported information on disease severity (mild, moderate, severe). 2. Mya Qol 15, Myasthenia Gravis Activities of Daily Living Profile (MG-ADL). 3. MG-ADL, self-reported information on disease severity (mild, moderate, severe). 4. Mya Qol 15,self-reported history of onset of disease and time of diagnosis. 5. Mya Qol 15, ENRICHD Social Support Inventory – In German: ESSI-D. 6. Mya Qol 15, self-reported information on net income, loss of income due to MG (yes, no), pension payments (yes, no), and social security benefits (yes, no). 7. Mya Qol 15,self-reported information on side effects of drug therapies (yes, no). 8. HADS (Hospital Anxiety and Depression Scale) and comparison with data from the literature. 9. HADS, Mya Qol 15. 10. Chalder Fatigue Scale (CFQ) and comparison with data from the literature. 11. CFQ, Mya Qol 15.	—

Measure

Time frame

1. Mya Quality of Life 15 (Mya Qol 15), self-reported information on disease severity (mild, moderate, severe). 2. Mya Qol 15, Myasthenia Gravis Activities of Daily Living Profile (MG-ADL). 3. MG-ADL, self-reported information on disease severity (mild, moderate, severe). 4. Mya Qol 15,self-reported history of onset of disease and time of diagnosis. 5. Mya Qol 15, ENRICHD Social Support Inventory – In German: ESSI-D. 6. Mya Qol 15, self-reported information on net income, loss of income due to MG (yes, no), pension payments (yes, no), and social security benefits (yes, no). 7. Mya Qol 15,self-reported information on side effects of drug therapies (yes, no). 8. HADS (Hospital Anxiety and Depression Scale) and comparison with data from the literature. 9. HADS, Mya Qol 15. 10. Chalder Fatigue Scale (CFQ) and comparison with data from the literature. 11. CFQ, Mya Qol 15.

—

Countries

Germany

Contacts

Public ContactSophie Lehnerer

Klinik für Neurologie mit Experimenteller Neurologie und Integriertes Myasthenie Zentrum, (Charité – Universitätsmedizin)

sophie.lehnerer@charite.de+49 30 450 539734

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 9, 2026