The Socio-Economic and Health-Related Quality of Life Impact of Myasthenia Gravis (MG) in Greece
Author(s)
Aggelina A1, Karampli E1, Naoum P1, Mavrovounis G2, Pantazopoulos I2, Pavi E1, Athanasakis K1
1University of West Attica, Athens, Attica, Greece, 2University of Thessaly, Faculty of Medicine, Larissa, Thessaly, Greece
Presentation Documents
OBJECTIVES: The present study investigated the effect of MG on patients’ everyday life and quality of life (QoL) in Greece.
METHODS: a cross-sectional study was conducted between October and November 2022, via an electronic questionnaire. Survey questions included: demographics, clinical characteristics, questions on patients' everyday life, MG-QoL15r (translated and culturally adapted in Greek). Recruitment of participants was performed via the Hellenic MG Association. The Research Ethics Committee of the University of West Attica approved the study protocol.
RESULTS: 123 respondents filled in the survey (response rate: 38.10%). Following questionnaire cleaning, 99 questionnaires were included for analysis. The median age (IQR) of the participants was 48.50 (13.50) years. 76 participants (76.80%) were females. The majority of participants reported being married (57.60%). Most participants (86.90%) reported a diagnosis of generalized MG; the median (IQR) time from diagnosis was 13 (13.50) years. 54.50% of participants reported having additional chronic health conditions. The mean ± SD reported MG-QoL15r score was 13.50 ± 7.70.
16.20% of participants reported that they cannot work, whereas 26.20% were forced to change jobs or work fewer hours as a consequence of MG. In addition, 22.20% retired due to MG-related disability. MG-related healthcare costs had an effect on household economic status for 85.26% of respondents: among those, 18.20% mentioned an “Important/Very important” effect. 53.50% and 26.30% patients reported mild and severe restriction of their everyday routine, respectively. In the latter case, help is provided by a household member.CONCLUSIONS: This is the first study to use a MG-specific QoL questionnaire in Greece. Our findings, in accordance with the international literature, bring forward the negative effect of MG on patient’s QoL. The present study also highlights the significant burden imposed by MG on patients and their families. Further analysis is needed to identify those most affected.
Conference/Value in Health Info
Value in Health, Volume 26, Issue 11, S2 (December 2023)
Code
PCR179
Topic
Patient-Centered Research
Topic Subcategory
Adherence, Persistence, & Compliance, Instrument Development, Validation, & Translation, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Neurological Disorders, No Additional Disease & Conditions/Specialized Treatment Areas