Introduction: Sickle cell disease is a hereditary disease associated with a wide range of complications that pose enormous obstacles to care. Dans cette étude, il était question d’évaluater les difficulties d’accessibilité aux soins chez les patients suffering from sickle cell disease in Guinea. Methods: This is a transversal study, with a descriptive aim of three (3) months going from December 15, 2023 to March 15, 2024 at the SOS DREPANO Center in Conakry. Our study population consisted of all patients and/or their tutors who received external consultation and/or were hospitalized and responded to our selection criteria, as well as all health providers who consented to the study. Results: The study allowed us to determine the types of care received by patients in the critical phase and in the inter-critical phase, but also the different obstacles and limits to health care. Thus, financial accessibility, access to medicines, the cost of medical services, administrative barriers, the knowledge and attitudes of providers, the lack of medical equipment, the obstacles linked to the disease and the person... were so many obstacles reported by our respondents. Conclusion: Sickle cell patients faced countless obstacles to receiving health care that it was urgent to identify in order to improve their care.
References
[1]
Thiam, L., Dramé, A., Coly, I.Z., Diouf, F.N., Seck, N., Boiro, D., et al. (2017) Epidemiological, Clinical and Hematological Profiles of SS Homozygous Sickle Cell Disease in a Child in Ziguinchor, Senegal. Pan African Medical Journal, 28, Article No. 208. https://doi.org/10.11604/pamj.2017.28.208.14006
[2]
Adigwe, O.P. (2022) Knowledge and Awareness of Sickle Cell Disease: A Cross-Sectional Study amongst Unmarried Adults in Nigeria’s Capital City. JournalofCommunityGenetics, 13, 579-585. https://doi.org/10.1007/s12687-022-00607-x
[3]
Leroy, J.G. (2012) Sialuria—Retired Chapter, for Historical Reference Only. GeneRe-views® [Internet], University of Washington. https://pubmed.ncbi.nlm.nih.gov/20301343/
[4]
Eleonore, N.L.E., Cumber, S.N., Charlotte, E.E., Lucas, E.E., Edgar, M.M.L., Nkfusai, C.N., et al. (2020) Malaria in Patients with Sickle Cell Anaemia: Burden, Risk Factors and Outcome at the Laquintinie Hospital, Cameroon. BMCInfectiousDiseases, 20, Article No. 40. https://doi.org/10.1186/s12879-019-4757-x
[5]
Streetly, A., Latinovic, R., Hall, K. and Henthorn, J. (2008) Implementation of Universal Newborn Bloodspot Screening for Sickle Cell Disease and Other Clinically Significant Haemoglobinopathies in England: Screening Results for 2005-7. JournalofClinicalPathology, 62, 26-30. https://doi.org/10.1136/jcp.2008.058859
[6]
Kolié, O.O., Bangoura, M.A., Camara, E., Kouyaté, M., Camara, S.H., Bangoura, K., et al. (2023) Epidemiological and Therapeutic Aspects of Sickle Cell Disease in Children at the National Hospital of Donka (Conakry): A Study of 182 Cases. Health Sciences and Disease, 24, 11-18.
[7]
Keita, P.M.I. (n.d.) Epidemiological Aspects of Sickle Cell Disease in the Pediatric Department of the Sikasso Hospital. https://www.saspublishers.com/article/19619/
[8]
Jacob, S.A., Daas, R., Feliciano, A., LaMotte, J.E. and Carroll, A.E. (2022) Caregiver Experiences with Accessing Sickle Cell Care and the Use of Telemedicine. BMCHealthServicesResearch, 22, Article No. 239. https://doi.org/10.1186/s12913-022-07627-w
[9]
Bemrich-Stolz, C., Halanych, J., Howard, T., Hilliard, L. and Lebenburger, J. (2015) Exploring Adult Care Experiences and Barriers to Transition in Adult Patients with Sickle Cell Disease. International Journal of Laboratory Hematology, 1, 26-32.
[10]
Adams-Graves, P. and Bronte-Jordan, L. (2016) Recent Treatment Guidelines for Managing Adult Patients with Sickle Cell Disease: Challenges in Access to Care, Social Issues, and Adherence. ExpertReviewofHematology, 9, 541-552. https://doi.org/10.1080/17474086.2016.1180242
[11]
Phillips, S., Chen, Y., Masese, R., Noisette, L., Jordan, K., Jacobs, S., et al. (2022) Perspectives of Individuals with Sickle Cell Disease on Barriers to Care. PLOSONE, 17, e0265342. https://doi.org/10.1371/journal.pone.0265342
[12]
Ayéroué, J., Kafando, E., Kam, L., Gué, E., Vertongen, F., Ferster, A., et al. (2009) Sickle Cell Syndrome of Hemoglobin SC Type: Experience of CHU Yalgado Ouédraogo in Ouagadougou (Burkina Faso). ArchivesdePédiatrie, 16, 316-321. https://doi.org/10.1016/j.arcped.2009.01.005
[13]
Aloni, M.N. and Nkee, L. (2014) Challenge of Managing Sickle Cell Disease in a Pediatric Population Living in Kinshasa, Democratic Republic of Congo: A Sickle Cell Center Experience. Hemoglobin, 38, 196-200. https://doi.org/10.3109/03630269.2014.896810
[14]
Galadanci, N., Wudil, B.J., Balogun, T.M., Ogunrinde, G.O., Akinsulie, A., Hasan-Hanga, F., et al. (2013) Current Sickle Cell Disease Management Practices in Nigeria. InternationalHealth, 6, 23-28. https://doi.org/10.1093/inthealth/iht022
[15]
Kambale-Kombi, P., Marini Djang’eing’a, R., Alworong’a Opara, J., Minon, J., Boemer, F., Bours, V., et al. (2021) Management of Sickle Cell Disease: Current Practices and Challenges in a Northeastern Region of the Democratic Republic of the Congo. Hematology, 26, 199-205. https://doi.org/10.1080/16078454.2021.1880752
[16]
Rankine-Mullings, A.E. and Owusu-Ofori, S. (2017) Prophylactic Antibiotics for Preventing Pneumococcal Infection in Children with Sickle Cell Disease. CochraneDatabaseofSystematicReviews, 2017, CD003427. https://doi.org/10.1002/14651858.cd003427.pub4
[17]
WHO (2024) Sickle-Cell Disease: A Strategy for the WHO African Region. https://iris.who.int/handle/10665/1682
[18]
Ahouadjogbe, A.M. and Kgoodbye, J.-J.O. (2019) Study on the Level of Women’s Access to Health Care in the Regions of Conakry, Kindia and Boke. Association of Women Journalists of Guinea (AFJ-G).