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Challenges to Follow HAT Patients Evolution After
Par Sadia Kaenzig, Responsable media et communication institutionnelle, DNDi
Post-therapy follow-up is a key component of any clinical trial aiming to obtain statistically significant efficacy results. When dealing with human African trypanosomiasis, the only way to determine a treatment’s efficacy is to follow a patient’s evolution for at least 18 months after treatment. Patients treated must therefore check in with the treatment centre every six months up to 18 months, to allow verification of the absence of the parasite in blood and/or cerebrospinal fluid collected by lumbar puncture, which is the only way to establish efficacy.

Patient follow-up is nevertheless very challenging to achieve in the context of HAT, as many patients do not return to the treatment centre spontaneously once they have completed treatment and are feeling well.

In the NECT study, 93% of people who
received treatment were seen through the minimum 18 months. This is truly a success, given that had efforts had not been made to complete follow-up, less than 50% of patients would have come back on their own after their first check-up at six months.

To achieve this, what are the critical challenges the team had to overcome? Firstly, as most of the HAT patients live far away from the treatment centre, they are confronted with major difficulty to access health facilities as means of transport are rare and/or often unaffordable; secondly, it is also difficult to convince them to return for follow-up visits especially when they are feeling perfectly fine, with no outward signs of disease for months. Thirdly, as an integral part of the follow-up and as there is no alternative diagnostic tool, patients must endure every six months painfullumbar punctures (in total three times). Thus, there is fear and reluctance of patients to show up.

In the NECT clinical trial case, getting the successful follow-up described above required concerted team efforts:
• To inform and explain to the community leaders the objective, the importance of this follow-up, and their critical role in motivating patients to return for their follow-up appointments
• To facilitate the mobility of health care personnel (see box) covering a lot of terrain by motorbike, sometimes confronting all conditions: sleeping outside in the rain, mud, and heat
• To provide some incentives to patients to cover the cost of transportation, and even reward them with an impregnated mosquito net for having completed their 18 months follow-up.

Under these circumstances, the health care professionals’ personal motivation must be strong in order to persevere in their efforts to alleviate the suffering of HAT patients.

Access Problems

Years of armed conflict and negligence left DRC in ruins, especially so in the rural areas. Merely getting to a health centre or hospital in these areas can be a daunting task. Sometimes even a few kilometres can take hours as most patients must walk. Seriously sick patients are usually pulled along in makeshift stretchers in order to make it through the bush.

Going the Extra Mile

Didier, a healthcare worker, travelled 25 km from Mbuji Myai to Bakwabowa in follow-up of a patient in the NECT study. Once there, he learned that the patient had gone 150 km away, to Kolumba. As he continued along the road, he fell into a three-metre hole, an old diamond mine. Stuck for hours before being rescued, he nevertheless managed to complete his journey and find the patient. The patient then returned for his follow-up visit to the treatment centre.
Published by Drugs for Neglected Diseases Initiative - 15 Chemin Louis-Dunant 1202 Geneva Switzerland - Photo credits: DNDi unless otherwise stated - Editor: Sadia Kaenzig - Tel: +41 22 906 9230 - Fax: +41 22 906 9231 -