Oral 4.03: Needs assessment and design of the first thymic malignancy and myasthenia gravis program

Background: Myasthenia gravis (MG) is the most common disorder of neuromuscular transmission, and approximately 15% of patients with MG develop thymic malignancies (TM), most often thymoma. Patients with MG range from healthy outpatients requiring little intervention to those requiring intensive-care level hospitalization. Similarly, there is a wide range of care required for TM patients, with surgical resection performed in most, and more advanced cases also requiring chemotherapy and/or radiotherapy. Although MG and TM are highly linked, to our knowledge, there have been no multidisciplinary programs developed to provide coordinated care for these medically complex patients. This study was performed to define the needs of MG and TM patients and, in doing so, design the first high-quality, efficient multidisciplinary program.

Methods: A cohort was identified retrospectively as all patients seen and treated for a primary diagnosis of MG and/or a TM at the University of Pennsylvania between 01/01/2005 and 04/30/2015. Demographics were assessed, along with subspecialties consulted for these patients. Hospital admissions data were analyzed for each patient by calendar year, and included hospitalizations with a primary encounter code frequency of >2%.

Results: A total of 1,236 consecutive patients were identified, including 881 with MG, 312 with TM, with 43 carrying both diagnoses. Age was distributed in MG and TM, respectively was: 18–39 years (19, 16%), 40–60 years (31, 38%), and >60 years (50, 46%). The majority of patients in both cohorts were Caucasian (67, 68%) or black (15, 17%). The most common subspecialties consulted were neurology (79%), thoracic surgery (13%), and ophthalmology (8%) for MG patients, and were thoracic surgery (65; 84%), radiation Oncology (42; 51%), and medical Oncology (27; 30%) for TM patients and TM and MG patients, respectively. A total of 103 MG patients (12%) underwent plasmapheresis. Hospital admissions averaged 3% and 5%/year for MG and TM patients, respectively, with a total of 36% admitted at least once over the study period. The primary reasons for admission were MG (46%), TM (38%), chest pain or respiratory failure (6%), rehabilitation (5%), chemotherapy (3%), or sepsis (2%). Average length of stay was 7.1 days.

Conclusions: We have identified a critical need for multidisciplinary programs at tertiary care centers for MG and TM patients, with neurology, ophthalmology, thoracic surgery, radiation Oncology, and medical Oncology identified as the essential subspecialties. There is a relatively high rate of hospital admissions for MG patients, even those not admitted for planned resection of a TM, indicating the need for more intensive and coordinated outpatient management. A novel MG and thymoma program has been established at our institution. Further studies will be needed to assess its utility with the following endpoints: increasing convenience for providers and patients, optimizing care coordination, shortening diagnosis to treatment time, and reducing hospital admissions.

Keywords: Thymoma; myasthenia gravis (MG); program development; radiation; hospitalization