Fastenau Anil, Beresford Maxwell Oliver, Willis Matthew, Stuetzle Sophie Cw, Schlumberger Fabian, Duighuisen Heleen Neeltje Willemijn
Marie Adelaide Leprosy Center, Karachi, Pakistan.
German Leprosy and Tuberculosis Relief Association (DAHW), Wuerzburg, Germany.
PLoS Negl Trop Dis. 2025 Jan 7;19(1):e0012764. doi: 10.1371/journal.pntd.0012764. eCollection 2025 Jan.
Recent epidemiological data shows significant rates of grade 2 disability at point-of-diagnosis among new leprosy cases in Pakistan. This indicates a feature of extensive diagnostic delay; the disability burden appears unmoving and disproportionate to the falling leprosy incidence rates. Therefore, this study was required to understand reasons for delay in diagnosis and treatment of leprosy.
A qualitative design of 7 semi-structured interviews was employed to reveal perceptions and understandings of various leprosy stakeholders in Pakistan, termed "leprosy experts". Subsequent inductive analysis was used to identify themes and subthemes concerned with delay in the diagnosis and treatment of leprosy.
Leprosy experts identified three main areas, or domains, to which delay can be attributed: 1. Awareness and beliefs about leprosy, within the general population, 2. Knowledge and clinical experience of leprosy, among healthcare professionals, 3. Leprosy control program infrastructure, allocation of resources and institutional funding. These domains were each viewed as consequent to the larger theme of 'low-endemicity'. Strong correlations between diagnostic delay and socioeconomic status, gender, geography and health system challenges, were also mentioned, and which intersected the three major themes.
Reasons for diagnostic delay are evident in all tiers of the healthcare hierarchy in Pakistan. Thus, an approach at multiple levels is justified, to improve the general awareness of leprosy, education of healthcare professionals, and organizational structuring. Additionally, cultural features relevant to different communities in Pakistan which might be different from other care access frameworks demonstrated a need for further study into the health beliefs of Pakistani patients in a wide range of communities.
最近的流行病学数据显示,巴基斯坦新麻风病例在确诊时二级残疾率很高。这表明存在广泛诊断延迟的特征;残疾负担似乎没有变化,且与麻风发病率下降不成比例。因此,需要开展这项研究来了解麻风诊断和治疗延迟的原因。
采用定性设计,进行了7次半结构化访谈,以揭示巴基斯坦各类麻风病利益相关者(即“麻风病专家”)的看法和理解。随后采用归纳分析法来确定与麻风诊断和治疗延迟相关的主题和子主题。
麻风病专家确定了延迟可归因的三个主要领域:1. 普通人群对麻风病的认识和观念;2. 医疗保健专业人员对麻风病的知识和临床经验;3. 麻风病控制项目的基础设施、资源分配和机构资金。这些领域均被视为“低流行率”这一更大主题的结果。还提到了诊断延迟与社会经济地位、性别、地理位置和卫生系统挑战之间的强相关性,这些因素与三个主要主题相互交叉。
在巴基斯坦医疗保健体系的各个层面,诊断延迟的原因都很明显。因此,采取多层次方法是合理的,以提高对麻风病的总体认识、对医疗保健专业人员的教育以及组织结构建设。此外,与巴基斯坦不同社区相关的文化特征可能与其他医疗服务获取框架不同,这表明有必要进一步研究巴基斯坦广泛社区中患者的健康观念。