Background: Patients lost to follow-up is a significant challenge in providing effective healthcare, and neurology is no exception. There is established research exploring the issue of losing patients to follow-up; however, less research regarding patients with neuromuscular disease lost to follow-up, especially accounting for race or socioeconomic background.
Objectives: Our objective was to quantify the number of MDA Clinic patients lost to follow-up at a major University Medical Center and to assess differences in follow-up status by race, with an MDA covered diagnosis, extracted from the Cerner EMR (electronic medical record) Millennium SQL database.
Results: Of all MDA Clinic over the past 5 years approximately 400 unique patients were seen, approximately 45% were identified as lost to follow-up, defined patients documented as living with the last appointment mark as a no show or no appointment in the last nine months, without any future appointments. The average age of the patients was 53 years old at the time of their last visit, and approximately 10% were marked as deceased in the medical record. In this group, about 25% identified as African American, 4% as Asian American, 50% as White, and the rest identified as either other or unknown. There did not appear to be a correlation between race and lost to follow-up status, with approximately 40% of African Americans lost to follow-up and approximately 50% of White individuals lost to follow-up, with the other races with similar findings.
Conclusion: Our data indicate a substantial portion of MDA Clinic patients are lost to follow-up, potentially representing an obstacle to providing effective care. This data, however, may not account for patients that have passed away, not updated in our medical records. Our data represent a first step toward better understanding the number of patients lost to follow-up at our MDA Clinic and how race does not appear to be associated with follow-up status. We hope this data may help us better understand the factors leading to how patients are lost to follow-up and take steps toward improving comprehensive patient care.