A recent study published in Acta Biomedica found that patients with myasthenia gravis (MG) experience dissatisfaction with available resources for the disease and use a variety of strategies to cope as a result.
Positive attitude emerged as the most commonly used strategy, indicating that many patients may try to be optimistic in the face of a challenging diagnosis. Overall, participants were less likely to engage in either avoidance strategies or self-transcendence, which is the idea of seeking a greater purpose beyond oneself.
The study included 215 individuals with MG, 83% of whom were female. Ages of participants ranged from 19 to 82 years, with an average age of 46 years. Patients were administered the Coping Orientation to Problems Experienced (COPE-NVI-25) questionnaire to investigate their coping mechanisms.
The authors found that 83% were unfamiliar with MG before diagnosis. Even after being diagnosed, 72% stated that they did not receive education from their clinical professionals, and 80% felt their nurses did not offer adequate strategies for managing symptoms.
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Notably, 95% of respondents felt telecommunication could improve disease management. “These findings underline the need for more comprehensive health education strategies, highlighting the potential of telecommunication to bridge informational gaps and enhance management approaches for MG,” the authors wrote.
Participants who received home health education and lived independently were more likely to cope via self-transcendence, seeking social support or actively attempting to solve problems.
Those who were more knowledgeable about the disease and received advice from healthcare professionals on how to manage daily life were more likely to practice avoidance strategies. “This indicates that patients who are more informed about their condition and those who receive actionable advice from healthcare professionals are likely to avoid less effective coping mechanisms,” noted the authors.
The authors also administered two open-ended questions to determine what participants would like to see change in the management of MG and, if applicable, why they felt their treatments were unsatisfactory.
Several major trends emerged from these responses. In general, participants desired more information from their doctors with less rush during appointments. Many patients were also dissatisfied with their current treatments and either wanted more information about alternative therapies or wanted to be more involved in the treatment decision-making process.
“Tailoring interventions to support each patient’s preferred coping style might help improve their overall management of the disease and enhance their quality of life,” the investigators concluded.
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