Clinical management and disease-modifying treatment for amyotrophic lateral sclerosis in African hospital centers: the TROPALS study

Abstract

Objective: To assess the availability of health workers and medications for clinical management of amyotrophic lateral sclerosis (ALS) in African hospital centers. Availability and affordability analyses of disease-modifying treatments were performed. Methods: A multicenter observational study involving African hospitals was conducted. A standard questionnaire was developed based on the European Federation of the Neurological Societies (EFNS) guidelines. We collected data on multidisciplinary care and availability of medicines. The availability and affordability were evaluated according to the WHO guidelines. Results: Nine hospital centers from eight African countries participated. We observed a low degree of implementation of multidisciplinary care in ALS management. Riluzole was only available in centers from South Africa, Senegal, Tunisia, and Togo. This treatment was unaffordable and the adjusted price was highly variable among countries. The cost of riluzole was partly or fully covered by patients, which implies a substantial economic burden. Conclusion: Our findings strengthen the need to promote multidisciplinary care in the clinical management of ALS in Africa. Disease-modifying medication should be both available and affordable. Local and international collaboration is needed to improve ALS health care access in Africa.

Keywords:

• Amyotrophic lateral sclerosis
• management
• availability
• affordability
• riluzole
• Africa

Acknowledgments

TROPALS Collaboration (in alphabetical order of country): Algeria-Alger: Leila Ait Aissa, Lamia Ali Pacha, Meriem Tazir; Algeria-Annaba: Toubal Nadia; Benin: Constant Adjien, Atokè Mendinatou Agbetou, Gilbert Avode, Dieu donné Gnonlonfoun, Dismand Houinato; Burkina Faso: Athanase Millogo; France: Philippe Couratier, Bello Hamidou, Jaime Luna, Benoît Marin, Marie Nicol, Pierre Marie Preux, Marie Raymondeau; Gabon: Yvonne Assegone Zeh, Philomène Kouna Ndouongo, Gertrude Mouangue, Edgard Ngoungou; Guinea: Fode Abass Cisse, Amara Cisse, Lansana Laho Diallo; Mali: Sara Diakite, Youssoufa Maiga; Mauritania: Mouhamadou Diagana, Cheikh Ould Hace, Abderrahmane Moulaye; Senegal: Anna Basse, Ousmane Cisse, Amadou Gallo Diop, Ndiaye Mansour; South Africa: Franclo Henning; Togo Lome I: Kombate Damelan, Agnon A Koffi Balogou; Togo Lome II: Thierry Agba, Mouftao Belo, Anayo Nyinévi; Tunisia: Amina Gargouri, Riadh Gouider, Imen Kacem.

Ethical approval

The TROPALS study followed all the dictates of the Declaration of Helsinki. All data were anonymized to protect privacy.

Declaration of interest

No potential conflict of interest was shown by the authors.

Additional information

Funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.