Challenges navigating thymectomy with myasthenia gravis: A qualitative study of patient treatment experiences

Aim: This study explores myasthenia gravis patients' experiences with the thymectomy treatment pathway. Background: Myasthenia gravis is a chronic autoimmune neuromuscular disorder causing skeletal muscle weakness. While thymectomy can alleviate symptoms, little is known about patients' subjective experiences. Methods: An exploratory qualitative design was employed, utilizing interviews with 10 individuals with myasthenia gravis who have undergone thymectomy. Data analysis involves thematic analysis to identify common patterns and themes in patients' experiences. Results: Derived from the collected interviews, challenges and experiences perceived by individuals with myasthenia gravis throughout the thymectomy treatment pathway was described. Patients narrated about feelings of being caught in a fragmented process contributing to their sense of uncertainty. Despite these challenges, positive experiences were also expressed, emphasizing the importance of individualized acknowledgment of patient needs. Despite a well-organized and streamlined treatment pathway in a highly specialized thymectomy center, patients felt that their body was split in two and highlighted the need for better integration between specialities, as well as greater understanding and support from surgical nursing staff. Furthermore, patients expressed uncertainties regarding postoperative care, underscoring the need for clearer guidance and support beyond the surgical hospital stay. Conclusions: Addressing individual patient needs, enhancing interdisciplinary coordination, and strengthening surgical nursing support can improve the thymectomy experience. Post-surgical discharge follow-up plans are essential for providing comprehensive care and meeting the diverse needs of individuals with myasthenia gravis throughout their medical and surgical treatment journey.