Mashina Chomba1, Dominique Mortel2, Deanna Saylor2
1Internal Medicine, University Teaching Hospital, 2Neurology, Johns Hopkins Hospital
Objective:
To describe the impact of delayed diagnosis of multiple sclerosis (MS) on Zambians living with MS in Zambia.
Background:
MS is considered rare in African countries such as Zambia leading to significant underdiagnosis in the country. However, recent efforts in the country have shown occurrence among Zambians, with long delays in diagnosis being observed. The impact of this delayed diagnosis on Zambians living with MS remains uninvestigated.
Design/Methods:
One-on-one interviews were conducted with patients that have been diagnosed with MS between 2018 and 2022 by neurologists in Lusaka, Zambia. Prior work showed that these patients had long delays in their MS diagnosis. Interviews were transcribed verbatim and data from the transcripts were categorized by themes of patients’ pre- and post-diagnosis experiences to establish the effects of the delayed diagnosis.
Results:
The delayed diagnosis of MS impacted patients in many ways. These included (1) significant disability at diagnosis; (2) depression and frustration from living with undiagnosed symptoms; (3) loss of employment or income resulting from inability to work due to significant disability; (4) incurring of large costs due to multiple clinical encounters both locally and internationally, often requiring medical tests that were paid for out-of-pocket; (5) loss of confidence in services provided by medical health workers in Zambia, even after MS diagnosis (6) lack of clarity in understanding MS disease severity and the role of neurologists post-diagnosis, often leading to poor compliance to treatment; and (7) significant strain on patients’ families and loved ones.
Conclusions:
Delayed diagnosis of MS negatively impacts the lives of people living with MS in Zambia and leads to low quality of life and significant disability. Efforts to improve early recognition of MS in Zambia are an important element in improving the care of people living with MS in Zambia.