A Spanish study found that while patients with myasthenia gravis (MG) had positive views on many aspects of their medical care, psychological and social challenges remain an unmet need. The study was recently published in Neurology and Therapy.
“Despite generally positive evaluations of medical treatment, many participants reported unmet psychological and social needs, insufficient support for caregivers, and limited institutional initiatives to address the inequalities associated with MG,” the study’s authors noted.
The researchers sought to better understand the lived experiences of patients with MG and how the disease impacts health-related quality of life, as well as the perceived adequacy of treatment and support.
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A total of 208 patients with MG across Spain participated in this study. Participants were asked to fill in a 93-item questionnaire that broached questions on multiple aspects of the impact of MG on daily living. Half (49.5%) had generalized MG, while a third (32.2%) had ocular MG. Over a third (36.4%) of patients had a certified disability status.
Overall, opinions on medical care were generally positive. Forty-five percent of participants rated their health as either “good” or “very good.” The majority of patients (73%) were satisfied with their access to healthcare services, and a similar proportion (68%) described improved quality of life due to the care received.
Nevertheless, pain and anxiety or depression were each reported by about half of patients. Almost 40% of patients felt they had reduced educational opportunities, and about 45% said they were limited in community participation. Most participants (87.1%) felt that institutional and political initiatives addressing inequalities associated with MG were lacking.
Family support was also a concern: 63% of patients responded that their family received little to no institutional support. A majority of patients (73%) described that their caregivers did not have mental health services access.
“Policies and healthcare strategies that address both the medical and social determinants of health are essential to improving quality of life and promoting equality for [patients with MG],” the authors of the study concluded.
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