Perspectives of buruli ulcer patients toward informed consent - An insight from Nigeria.

Introduction: Informed consent is a basic ethical requirement in situations involving sharing of patients' data. It supports and upholds the ethical principle of respect for persons and individual autonomy. For Buruli ulcer (BU) patients, associated stigma renders them vulnerable, hence the need for emphasis on additional protection by ensuring obtaining informed consent before third party use of their data. The authors therefore sought to determine willingness of these patients to give informed consent to the third party use of their data before and after treatment. Methodology: This cross-sectional study was carried out between February and August, 2019. The study involved BU patients from three endemic states in Nigeria. Data were collected using pretested, researcher-administered semi-structured questionnaires. Results: A total of 92 respondents participated in the study. The median age was 23.5 years (range 4-74 years) with the age group <15 years being the modal age group 36 (39.13%). About a quarter of the respondents (23.91%) had suffered some form of discrimination in the course of their disease. Majority 86 (93.48%) were favorably disposed to allowing the use of their data for donor drive, policy development, and teaching/training purposes. A significant greater proportion of respondents 90 (97.83%) were willing to give consent for the use of their oral interview as against pictures and videos both in the pre- and post-treatment periods. Conclusion: The present study provides evidence that majority of the respondents were positively inclined to give consent to use of their data by a third party. However, intrusion into privacy and anonymity were major concerns for the respondents.

RésuméIntroduction: Le consentement éclairé est une exigence éthique de base dans les situations impliquant le partage des données des patients. Il soutient et défend le principe éthique du respect des personnes et de l'autonomie individuelle. Pour les patients atteints d'ulcère de Buruli, la stigmatisation associée les rend vulnérables, d'où la nécessité de mettre l'accent sur une protection supplémentaire en garantissant l'obtention d'un consentement éclairé avant l'utilisation par des tiers de leurs données. Les auteurs ont donc cherché à déterminer la volonté de ces patients de consentir en connaissance de cause à l'utilisation de leurs données par des tiers avant et après le traitement. Les méthodes: Cette étude transversale a été réalisée entre février et août 2019. L'étude a porté sur des patients atteints d'ulcère de Buruli provenant de trois États endémiques du Nigéria. Les données ont été recueillies à l'aide de questionnaires semi-structurés prétestés et administrés par des chercheurs. Résultats: Au total, 92 répondants ont participé à l'étude. L'âge médian était de 23,5 ans (de 4 à 74 ans), le groupe d'âge <15 ans étant le groupe d'âge modal 36 (39,13%). Environ un quart des répondants (23,91%) ont subi une forme de discrimination au cours de leur maladie. La majorité 86 (93,48%) étaient favorables à autoriser l'utilisation de leurs données à des fins de mobilisation des donateurs, d'élaboration de politiques et d'enseignement / formation. Une proportion significativement plus élevée de répondants 90 (97,83%) étaient disposés à donner leur consentement pour l'utilisation de leur entretien oral par rapport aux photos et vidéos à la fois avant et après le traitement. Conclusion: La présente étude prouve que la majorité des répondants étaient positivement enclins à consentir à l'utilisation de leurs données par un tiers. Cependant, l'intrusion dans la vie privée et l'anonymat étaient des préoccupations majeures pour les répondants.

Financial burden of health care for Buruli ulcer patients in Nigeria: the patients' perspective.

BACKGROUND: The economic burden of Buruli ulcer for patients has not been well-documented. This study assessed the costs of Buruli ulcer care to patients from the onset of illness to diagnosis and to the end of treatment. METHODS: This was a cross-sectional cost of illness study conducted among patients with Buruli ulcer in four States in Nigeria between July and September 2015. A structured questionnaire was used to collect data on the patients' characteristics, household income and out-of-pocket costs of care. RESULTS: Of 92 patients surveyed, 54 (59%) were older than 15years, 49 (53%) were males, and 86 (93%) resided in a rural area. The median (IQR) direct medical and non-medical cost per patient was US$124 (50-282) and US$3 (3-6); corresponding to 149% and 4% of the patients' median monthly household income, respectively. The overall direct costs per patient was US$135 (58-327), which corresponded to 162% of median monthly household income, with pre-diagnosis costs accounting for 94.8% of the total costs. The direct costs of Buruli ulcer care were catastrophic for 50% of all patients/households - the rates of catastrophic costs for Buruli ulcer care was 66% and 19% for patients belonging to the lowest and highest income quartiles, respectively. CONCLUSIONS: Direct costs of Buruli ulcer diagnosis and treatment are catastrophic to a substantial proportion of patients and their families.