基层视角下的罕见病患者管理：以喀麦隆为例看患者组织在全球罕见病认可中的作用。
The management of rare disease patients from a grassroot perspective: the role of patients' organizations in the global recognition of rare diseases in Cameroon.
机构信息
Department of Sociology, University of Yaounde I, Yaounde, Cameroon.
出版信息
Pan Afr Med J. 2024 Feb 13;47:64. doi: 10.11604/pamj.2024.47.64.38226. eCollection 2024.
INTRODUCTION
rare diseases (RD) are extremely complex health conditions. Persons affected by these conditions in Cameroon are often neglected in society and health systems through the inexistence of policies and programs. In Cameroon, there exists no program or policy conceived to address their needs in terms of access to quality health care, timely and reliable diagnosis, treatments, education, etc. The consequence is that persons living with a RD (PLWRD) and their families do not participate in social life. The unique fate of PLWRD reveals that the principle of social justice and equity is flawed in Cameroon. However, patients, in order to survive in society, rely on patients' organizations (PO) to improve their quality of life (QoL) and advocate for a better consideration in the society. The aim of this paper is to highlight how initiatives from a grassroot perspective like POs can inform decision-makers to address the needs of PLWRD and their families.
METHODS
the study associated a systematic literature review and semi-structured interviews with parents of children suffering from a RD and who are members of a PO. Through the systematic literature review we highlighted the impact POs have in the development of research on RDs, patient literacy, patient empowerment and advocacy while semi-structured interviews brought out the needs of patients and their families.
RESULTS
findings, on the one hand show that, in Cameroon PLWRD face a number of challenges like the incurability of their condition, catastrophic medical expenses, stigmatization and marginalization, etc. and though in POs their QoL still remains poor. On the other hand, where POs are empowered they are key actors in research on RDs and help decision-makers on having a better insight into the type of RD that exists across a geographical area, the sociodemographic profile of patients, etc. for a better management of PLWRD.
CONCLUSION
the study suggests that the ministry of public health should create a network with existing RD POs to adequately meet the needs of PLWRD.
简介
罕见病（RD）是极其复杂的健康状况。在喀麦隆，受这些疾病影响的人在社会和卫生系统中经常被忽视，因为没有相关政策和计划。在喀麦隆，没有针对他们获得高质量医疗保健、及时可靠诊断、治疗、教育等需求的方案或政策。其结果是，患有 RD 的人（PLWRD）及其家属无法参与社会生活。PLWRD 的独特命运表明，喀麦隆的社会正义和平等原则存在缺陷。然而，为了在社会中生存，患者依赖于患者组织（PO）来提高他们的生活质量（QoL）并倡导在社会中得到更好的考虑。本文的目的是强调像 PO 这样的基层倡议如何为决策者提供信息，以满足 PLWRD 及其家属的需求。
方法
本研究结合了系统文献综述和对患有 RD 且是 PO 成员的儿童家长的半结构式访谈。通过系统文献综述，我们强调了 PO 在 RD 研究、患者素养、患者赋权和倡导方面的发展所产生的影响，而半结构式访谈则揭示了患者及其家属的需求。
结果
一方面，研究结果表明，在喀麦隆，PLWRD 面临着许多挑战，例如病情无法治愈、医疗费用高昂、污名化和边缘化等，尽管在 PO 中，他们的生活质量仍然很差。另一方面，在 PO 被赋予权力的地方，他们是 RD 研究的关键参与者，并帮助决策者更好地了解地理区域内存在的 RD 类型、患者的社会人口特征等，以更好地管理 PLWRD。
结论
研究表明，公共卫生部应与现有的 RD PO 建立网络，以充分满足 PLWRD 的需求。
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