CAREGIVER BURDEN OF DISEASE IN A EUROPEAN REAL-WORLD GENERALIZED MYASTHENIA GRAVIS POPULATION AS REPORTED BY PHYSICIANS AND CAREGIVERS
Author(s)
Tom Denee, MBA, PharmD1, Wisam Karmous, PharmD, MS2, Gregor Gibson, BSc3, Hannah Connolly4, Shiva Lauretta Birija, BSc3, Beth Poirrette, MSc3, Amy Foster, BSc5, Wim Noel, PhD6, Giorgio Maria Boggia, MD, MBA7.
1Janssen, Breda, Netherlands, 2Johnson & Johnson, Issy les Moulineaux, France, 3Adelphi Real World, Bollington, United Kingdom, 4Bollington, United Kingdom, 5ADELPHI REAL WORLD, Bollington, United Kingdom, 6Johnson & Johnson, Beerse, Belgium, 7Johnson & Johnson, Milan, Italy.
1Janssen, Breda, Netherlands, 2Johnson & Johnson, Issy les Moulineaux, France, 3Adelphi Real World, Bollington, United Kingdom, 4Bollington, United Kingdom, 5ADELPHI REAL WORLD, Bollington, United Kingdom, 6Johnson & Johnson, Beerse, Belgium, 7Johnson & Johnson, Milan, Italy.
OBJECTIVES: Generalized Myasthenia Gravis (gMG) is a rare chronic autoantibody-mediated neuromuscular disease characterized by muscle weakness and fatigue, which cause significant caregiver burden that has previously been poorly defined. We aim to describe the caregiver burden of gMG patients in five European countries.
METHODS: Data were drawn from the Adelphi gMG Disease Specific Programme™, collected between January-November 2025 in Germany, Italy, France, Spain and the UK. Physicians reported cross-sectionally on their consulting patients with gMG including clinical status and treatment. Caregivers attending the consultation with the patient, reported on the burden of caregiving and their own health state.
RESULTS: Overall, 73 patients and their caregivers were included. Physicians reported, mean (standard deviation; SD) patient age was 55.5 (17.6) years, 50.7% were male and were diagnosed 4.7 (4.1) years prior to survey. Mean (SD) Myasthenia Gravis - ADL score was 5.5 (3.8) and 67.1% of patients were in Myasthenia Gravis Foundation of America class II (mild). Amongst patients prescribed treatment (n=69), 60.9% were prescribed standard of care therapies and 39.1% were prescribed advanced therapies. Caregiver’s self-reported age was 53.8 (14.0) years, 58.9% were female and 72.6% were the partner/spouse of the patient. Caregivers had been caregiving for the patient for 4.9 (7.7) years prior to survey and a mean (SD) of 15.9 (21.8) hours per week. Due to caregiving responsibilities, 43.3% reported changes to employment. Caregivers reported most frequently aiding with home cleaning/maintenance (84.6%) and meal preparation (73.1%). Caregivers mean (SD) scores on the Zarit Burden Interview Short Form (12 item), EQ-VAS and EQ-5D-5L index scores were 13.6 (8.7), 83.0 (13.9), and 0.9 (0.1), indicating a medium burden according to the ZBI-SF and low burden on the EQ-5D-5L respectively.
CONCLUSIONS: Caregivers of gMG patients were mainly impacted in their ability to work due to caregiving responsibilities despite an average mild MGFA class and MG-ADL score.
METHODS: Data were drawn from the Adelphi gMG Disease Specific Programme™, collected between January-November 2025 in Germany, Italy, France, Spain and the UK. Physicians reported cross-sectionally on their consulting patients with gMG including clinical status and treatment. Caregivers attending the consultation with the patient, reported on the burden of caregiving and their own health state.
RESULTS: Overall, 73 patients and their caregivers were included. Physicians reported, mean (standard deviation; SD) patient age was 55.5 (17.6) years, 50.7% were male and were diagnosed 4.7 (4.1) years prior to survey. Mean (SD) Myasthenia Gravis - ADL score was 5.5 (3.8) and 67.1% of patients were in Myasthenia Gravis Foundation of America class II (mild). Amongst patients prescribed treatment (n=69), 60.9% were prescribed standard of care therapies and 39.1% were prescribed advanced therapies. Caregiver’s self-reported age was 53.8 (14.0) years, 58.9% were female and 72.6% were the partner/spouse of the patient. Caregivers had been caregiving for the patient for 4.9 (7.7) years prior to survey and a mean (SD) of 15.9 (21.8) hours per week. Due to caregiving responsibilities, 43.3% reported changes to employment. Caregivers reported most frequently aiding with home cleaning/maintenance (84.6%) and meal preparation (73.1%). Caregivers mean (SD) scores on the Zarit Burden Interview Short Form (12 item), EQ-VAS and EQ-5D-5L index scores were 13.6 (8.7), 83.0 (13.9), and 0.9 (0.1), indicating a medium burden according to the ZBI-SF and low burden on the EQ-5D-5L respectively.
CONCLUSIONS: Caregivers of gMG patients were mainly impacted in their ability to work due to caregiving responsibilities despite an average mild MGFA class and MG-ADL score.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
RWD183
Topic
Real World Data & Information Systems
Disease
Neurological Disorders, Rare & Orphan Diseases