Higher Need for Medical and Societal Resources of Moderately-to-Severely Affected Myasthenia Gravis Patients in Comparison to the General Population: Analysis of Digitally Collected Observational Data from 8 Countries
Author(s)
Dewilde S1, Paci S2, Kousoulakou H3, De Ruyck F2, Phillips G4, Janssen B5
1Services in Health Economics (SHE), Brussels, Belgium, 2Argenx BVBA, Ghent, Belgium, 3Freelance consultant, Athens, Greece, 4Argenx, Inc., Boston, MA, USA, 5The EuroQol Group, Rotterdam, Netherlands
Presentation Documents
OBJECTIVES: Myasthenia Gravis (MG) is a rare autoimmune neuromuscular disease causing muscle weakness resulting in problems with vision, swallowing, speech, mobility, dexterity and breathing. This analysis compared work productivity and medical resource utilization (MRU) of moderate-to-severe MG (msMG) patients with the general population.
METHODS: The MyRealWorld-MG study is a digital, observational, multi-country study (US, UK, Canada, Italy, Germany, Spain, Japan) among adult MG patients. Patients entered personal and disease characteristics via a smartphone application, and provided data on work productivity, caregiver help and use of medical services. msMG patients were identified as having a MG-Activities of Daily Living (MG-ADL) total score >6.
The General Population Norms (POPUP) observational study collected similar data and was conducted in Canada, Belgium, Italy, Germany, Netherlands, Spain, UK and the US. POPUP enrolled members of the general public and national samples were representative of age, gender, education and region. POPUP data were age-gender matched to the proportions observed in MyRealWorld-MG.RESULTS: POPUP enrolled 9,000 persons whereas MyRealWorld-MG included 880 patients who completed the MG-ADL; of those, 431 had msMG.
57.1% of msMG patients needed a caregiver, compared to 7.1% in POPUP. Additionally, 43.5% of msMG patients took sick leave during the past month (duration 14.8 days, std 12.0), which was four times higher than observed in POPUP (10.2%, duration 13.1 days, std 11.6). MRU showed a seventeen-fold rise in the hospitalizations rate (rate=0.158/month with length-of-stay 10.0 days vs. rate=0.009/month with length-of-stay 3.1 days), a ten-fold increase in ER visits (0.151 vs. 0.014 per month) and four times higher rates of specialist visits per month (0.811 vs. 0.188) for msMG compared to POPUP.CONCLUSIONS: Suffering from msMG is associated with higher medical care and societal costs. When compared to the general population, a major impact of msMG on caregiver burden, productivity costs and MRU was observed.
Conference/Value in Health Info
Value in Health, Volume 25, Issue 12S (December 2022)
Code
PCR140
Topic
Clinical Outcomes, Patient-Centered Research
Topic Subcategory
Clinical Outcomes Assessment, Patient-reported Outcomes & Quality of Life Outcomes
Disease
SDC: Neurological Disorders, SDC: Rare & Orphan Diseases, SDC: Respiratory-Related Disorders (Allergy, Asthma, Smoking, Other Respiratory), SDC: Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic