Centering Patient Expectations of a Novel Home-Based Oral Drug Treatment among T. b. rhodesiense Human African Trypanosomiasis Patients in Uganda

Abstract

The recent approval of fexinidazole for human African trypanosomiasis (HAT) caused by T. b. gambiense enables improved patient management that is pivotal to elimination. Effective in both the early and late stages of the disease, it obviates the need for invasive lumbar punctures which guide therapy, in some patients. Unlike existing injectable treatments requiring systematic hospitalisation, fexinidazole’s oral administration will allow many patients to be treated in an outpatient or home-based setting. Drawing on interviews with 25 T. b. rhodesiense HAT patients managed under existing protocols in Uganda where trials of fexinidazole will begin shortly, this article explores patient expectations of the new protocol to help HAT programmes anticipate patient concerns. Alongside frightening symptoms of this life-threatening illness, the pain and anxiety associated with lumbar punctures and intravenous injections of melarsoprol contributed to a perception of HAT as a serious illness requiring expert medical care. While preferring a new protocol that would avoid these uncomfortable procedures, patients’ trust in the care they received meant that nearly half were hesitant towards shifting care out of the hospital setting. Clinical observation is an important aspect of existing HAT care for patients. Programmes may need to offer extensive counselling and monitoring support before patients are comfortable accepting care outside of hospitals.