Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: An exploratory qualitative study in Tunisia

Aicha Boukthir (1, 2) , Jihene Bettaieb (1, 2) , Astrid C. Erber (3, 4) , Hind Bouguerra (5) , Rym Mallekh (1) , Ikbel Naouar (1) , Adel Gharbi (1) , Manal Alghamdi (6) , Emma Plugge (7) , Piero Olliaro (4, 8) , Afif Ben Salah (1, 2, 6)

1 Laboratoire d'Epidémiologie Médicale, Institut Pasteur de Tunis
2 LR11IPT02 - Laboratoire de Transmission, Contrôle et Immunobiologie des Infections - Laboratory of Transmission, Control and Immunobiology of Infection
3 Medizinische Universität Wien = Medical University of Vienna
4 University of Oxford
5 ONMNE - Observatoire national des maladies nouvelles et émergentes [Tunis]
6 Arabian Gulf University
7 Public Health England [London]
8 TDR - UNICEF/UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases

Although non-fatal and mostly self-healing in the case of Leishmania (L.) major, cutaneous leishmaniasis (CL) is mainly treated to reduce lesion healing time. Less attention is paid to the improvement of scars, especially in aesthetically relevant areas of the body, which can dramatically affect patients’ wellbeing. We explored patients’ perspectives about treatment options and the social and psychological burden of disease (lesion and scar). Individual in-depth interviews were conducted with ten confirmed CL patients at two L. major endemic sites in Southern Tunisia (Sidi Bouzid and Gafsa). Participants were selected using a sampling approach along a spectrum covering e.g. age, sex, and clinical presentation. Patients’ experiences, opinions and preferences were explored, and their detailed accounts gave an insight on the impact of CL on their everyday lives. The impact of CL was found to be considerable. Most patients were not satisfied with treatment performance and case management. They expected a shorter healing time and better accessibility of the health system. Tolerance of the burden of disease was variable and ranged from acceptance of hidden scars to suicidal thoughts resulting from the fear to become handicapped, and the stress caused by close relatives. Some believed CL to be a form of skin cancer. Unexpectedly, this finding shows the big gap between the perspectives of patients and assumptions of health professionals regarding this disease. This study provided valuable information for better case management emphasizing the importance of improving communication with patients, and accessibility to treatment. It generated context-specific knowledge to policy makers in Tunisia to implement effective case management in a country where access to treatment remains a challenge due to socio-economic and geographic barriers despite a long tradition in CL control.

Domaines: Sciences du Vivant [q-bio]

Aicha Boukthir, Jihene Bettaieb, Astrid C. Erber, Hind Bouguerra, Rym Mallekh, et al.. Psycho-social impacts, experiences and perspectives of patients with Cutaneous Leishmaniasis regarding treatment options and case management: An exploratory qualitative study in Tunisia. PLoS ONE, 2020, 15 (12), pp.e0242494. ⟨10.1371/journal.pone.0242494⟩. ⟨pasteur-03561522⟩