Understanding reasons for delay in diagnosis of leprosy in Pakistan: A qualitative study.

<h4>Background</h4>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 lepro...

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Main Authors: Anil Fastenau, Maxwell Oliver Beresford, Matthew Willis, Sophie Cw Stuetzle, Fabian Schlumberger, Heleen Neeltje Willemijn Duighuisen
Format: Article
Language:English
Published: Public Library of Science (PLoS) 2025-01-01
Series:PLoS Neglected Tropical Diseases
Online Access:https://doi.org/10.1371/journal.pntd.0012764
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author Anil Fastenau
Maxwell Oliver Beresford
Matthew Willis
Sophie Cw Stuetzle
Fabian Schlumberger
Heleen Neeltje Willemijn Duighuisen
author_facet Anil Fastenau
Maxwell Oliver Beresford
Matthew Willis
Sophie Cw Stuetzle
Fabian Schlumberger
Heleen Neeltje Willemijn Duighuisen
author_sort Anil Fastenau
collection DOAJ
description <h4>Background</h4>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.<h4>Methods</h4>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.<h4>Results</h4>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.<h4>Conclusion</h4>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.
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spelling doaj-art-f1185b332e8a4e56931a256de08714ec2025-01-17T05:32:30ZengPublic Library of Science (PLoS)PLoS Neglected Tropical Diseases1935-27271935-27352025-01-01191e001276410.1371/journal.pntd.0012764Understanding reasons for delay in diagnosis of leprosy in Pakistan: A qualitative study.Anil FastenauMaxwell Oliver BeresfordMatthew WillisSophie Cw StuetzleFabian SchlumbergerHeleen Neeltje Willemijn Duighuisen<h4>Background</h4>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.<h4>Methods</h4>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.<h4>Results</h4>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.<h4>Conclusion</h4>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.https://doi.org/10.1371/journal.pntd.0012764
spellingShingle Anil Fastenau
Maxwell Oliver Beresford
Matthew Willis
Sophie Cw Stuetzle
Fabian Schlumberger
Heleen Neeltje Willemijn Duighuisen
Understanding reasons for delay in diagnosis of leprosy in Pakistan: A qualitative study.
PLoS Neglected Tropical Diseases
title Understanding reasons for delay in diagnosis of leprosy in Pakistan: A qualitative study.
title_full Understanding reasons for delay in diagnosis of leprosy in Pakistan: A qualitative study.
title_fullStr Understanding reasons for delay in diagnosis of leprosy in Pakistan: A qualitative study.
title_full_unstemmed Understanding reasons for delay in diagnosis of leprosy in Pakistan: A qualitative study.
title_short Understanding reasons for delay in diagnosis of leprosy in Pakistan: A qualitative study.
title_sort understanding reasons for delay in diagnosis of leprosy in pakistan a qualitative study
url https://doi.org/10.1371/journal.pntd.0012764
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