Introduction: Patients with myasthenia gravis (MG) are impacted by a variety of signs and symptoms, which can have a profound effect on day-to-day life. Due to the complex and heterogenous nature of MG, it is crucial to understand which signs and symptoms that impact daily life are most important to patients and their caregivers.
Objective: To develop and refine an MG patient journey map (PJM), and evaluate the educational and support resources available to patients, caregivers, and healthcare professionals.
Methods: The PJM was developed using resources from MG organizations that informed different phases of the patient journey (initial presentation, testing and diagnosis, treatment, and maintenance) identified through comprehensive organizational mapping. Experiences of patients with MG, obtained through patient (n=5) and caregiver (n=1) interviews, were also incorporated. The PJM was further refined with input from the MG Patient Advocate Council (consisting of three patient advocates, five patients, and one caregiver).
Results: The refined, validated PJM identified challenges and limitations that impacted stakeholders across the patient–provider continuum, resulting in suboptimal care. The need for educational materials for patients and professionals was highlighted. Early symptom dismissal, lack of MG awareness, and difficulty in accessing accurate diagnostic tests delayed diagnosis. Challenges in relationships and family dynamics due to symptoms like incontinence and sexual dysfunction underscored the need to address psychological and psychosocial burdens, and the value of developing caregiver support mechanisms. MG has a significant socio-economic impact due to healthcare costs and lost work productivity. Long-term management can be complex and burdensome.
Conclusion: This research generated a comprehensive MG PJM from the patient perspective, highlighting that patients with MG face lifelong challenges. We also identified gaps and opportunities to improve patient care, underscoring the need for a support network to help patients and their caregivers navigate and overcome obstacles associated with the disease.