NLR | until No Leprosy Remains, Amsterdam, The Netherlands.
Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.
PLoS Negl Trop Dis. 2024 Aug 13;18(8):e0012342. doi: 10.1371/journal.pntd.0012342. eCollection 2024 Aug.
Leprosy and lymphatic filariasis (LF) are among the most disabling neglected tropical diseases (NTDs) that affect the citizens of Mozambique, especially in the Northern provinces. The irreversible impairments caused by these NTDs often lead to psychosocial consequences, including poor mental wellbeing, stigma and reduced social participation. Limited data on these consequences are available for Mozambique, which are urgently needed to better understand the true disease burden and support advocacy for scaling up interventions.
A cross-sectional mixed-methods study was conducted. Mental distress was assessed with the Self Reporting Questionnaire (SRQ-20), participation restriction was assessed with the Participation Scale Short (PSS) and perceived stigma was assessed with the Explanatory Model Interview Catalogue affected persons stigma scale (EMIC-AP). Additionally, semi-structured interviews were conducted with persons affected by leprosy or LF.
In total, 127 persons affected by leprosy and 184 persons affected by LF were included in the quantitative portion of the study. For the qualitative portion, eight semi-structured interviews were conducted. In both disease groups, mental distress was found in 70% of participants. Moreover, 80% of persons affected by leprosy and 90% of persons affected by LF perceived stigma. Moderate to extreme participation restriction was found in approximately 43% of persons affected by leprosy and in 26% of the persons affected by LF. Persons affected by leprosy and LF felt excluded from society and experienced financial problems. More severe disabilities were associated with more severe outcomes for mental wellbeing, participation restriction and stigma. By contrast, participation in a self-care group was suggested to have a positive impact on these outcomes.
The findings provide evidence that persons affected by leprosy and LF must not only confront physical impairments but also experience significant disability in the psychosocial domain, including mental distress, participation restriction and stigma. These challenges must be urgently addressed by NTD programmes to promote the inclusion and wellbeing of persons affected by NTDs.
麻风病和淋巴丝虫病（LF）是影响莫桑比克公民的最具致残性的被忽视热带病（NTD）之一，尤其是在北部省份。这些 NTD 造成的不可逆转的损伤常常导致心理社会后果，包括心理健康状况不佳、污名化和社会参与减少。莫桑比克对此类后果的数据有限，迫切需要这些数据来更好地了解真正的疾病负担，并支持扩大干预措施的宣传。
进行了一项横断面混合方法研究。使用自我报告问卷（SRQ-20）评估精神困扰，使用参与量表短表（PSS）评估参与受限，使用解释模型访谈目录受影响者污名量表（EMIC-AP）评估感知污名。此外，还对麻风病和 LF 患者进行了半结构式访谈。
共有 127 名麻风病患者和 184 名 LF 患者参与了研究的定量部分。在定性部分，进行了 8 次半结构式访谈。在这两种疾病组中，70%的参与者存在精神困扰。此外，80%的麻风病患者和 90%的 LF 患者感知到污名。大约 43%的麻风病患者和 26%的 LF 患者存在中度至重度的参与受限。麻风病和 LF 患者感到被社会排斥，并经历经济问题。更严重的残疾与心理健康、参与受限和污名更严重的结果相关。相比之下，参与自我护理小组被认为对这些结果有积极影响。
研究结果表明，麻风病和 LF 患者不仅要面对身体损伤，还要在心理社会领域经历严重的残疾，包括精神困扰、参与受限和污名。NTD 规划必须紧急解决这些挑战，以促进 NTD 患者的包容和平等。
