"I Wasted 3 Years, Thinking It's Not a Problem": Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study
Worldwide, leprosy is one of the major causes of preventable disability. India contributes to 60% of global leprosy burden. With increasing numbers of leprosy with grade 2 disability (visible disability) at diagnosis, we aimed to determine risk factors associated with grade 2 disability among new ca...
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| creator | Muthuvel, Thirumugam Govindarajulu, Srinivas Isaakidis, Petros Shewade, Hemant Deepak Rokade, Vasudev Singh, Rajbir Kamble, Sanjeev |
| description | Worldwide, leprosy is one of the major causes of preventable disability. India contributes to 60% of global leprosy burden. With increasing numbers of leprosy with grade 2 disability (visible disability) at diagnosis, we aimed to determine risk factors associated with grade 2 disability among new cases and explore patients and providers' perspectives into reasons for late presentation.
This was an explanatory mixed-methods study where the quantitative component, a matched case-control design, was followed by a qualitative component. A total of 70 cases (grade 2 disability) and 140 controls (grade 0) matched for age and sex were randomly sampled from new patients registered between January 2013-January 2015 in three districts of Maharashtra (Mumbai, Thane and Amaravati) and interviewed using a structured close ended questionnaire. Eight public health care providers involved in leprosy care and 7 leprosy patients were purposively selected (maximum variation sampling) and interviewed using a structured open-ended interview schedule. Among cases, overall median (IQR) diagnosis delay in months was 17.9(7-30); patient and health system delay was 7(4-16.5) and 5.5(0.9-12.5) respectively; this was significantly higher than the delay in controls. Reasons for delayed presentation identified by the quantitative and qualitative data were: poor awareness of leprosy symptoms, first health care provider visited being private practitioners who were not aware about provision of free leprosy treatment at public health care facilities, reduced engagement and capacity of the general health care system in leprosy control.
Raising awareness in communities and health care providers regarding early leprosy symptoms, engagement of private health care provider in early leprosy diagnosis and increasing capacity of general health system staff, especially targeting high endemic areas that are hotspots for leprosy transmission may help in reducing diagnosis delays. |
| doi_str_mv | 10.1371/journal.pntd.0005192 |
| format | Article |
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This was an explanatory mixed-methods study where the quantitative component, a matched case-control design, was followed by a qualitative component. A total of 70 cases (grade 2 disability) and 140 controls (grade 0) matched for age and sex were randomly sampled from new patients registered between January 2013-January 2015 in three districts of Maharashtra (Mumbai, Thane and Amaravati) and interviewed using a structured close ended questionnaire. Eight public health care providers involved in leprosy care and 7 leprosy patients were purposively selected (maximum variation sampling) and interviewed using a structured open-ended interview schedule. Among cases, overall median (IQR) diagnosis delay in months was 17.9(7-30); patient and health system delay was 7(4-16.5) and 5.5(0.9-12.5) respectively; this was significantly higher than the delay in controls. Reasons for delayed presentation identified by the quantitative and qualitative data were: poor awareness of leprosy symptoms, first health care provider visited being private practitioners who were not aware about provision of free leprosy treatment at public health care facilities, reduced engagement and capacity of the general health care system in leprosy control.
Raising awareness in communities and health care providers regarding early leprosy symptoms, engagement of private health care provider in early leprosy diagnosis and increasing capacity of general health system staff, especially targeting high endemic areas that are hotspots for leprosy transmission may help in reducing diagnosis delays.</description><identifier>ISSN: 1935-2735</identifier><identifier>ISSN: 1935-2727</identifier><identifier>EISSN: 1935-2735</identifier><identifier>DOI: 10.1371/journal.pntd.0005192</identifier><identifier>PMID: 28081131</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>Adult ; Analysis ; Awareness ; Case-Control Studies ; Diagnosis ; Disability ; Evaluation Studies as Topic ; Female ; Funding ; Health care ; Health Knowledge, Attitudes, Practice ; Health Personnel - psychology ; Health risk assessment ; Health services ; Humans ; India ; Interviews ; Leprosy ; Leprosy - diagnosis ; Leprosy - psychology ; Lung diseases ; Male ; Medicine and Health Sciences ; Methods ; Middle Aged ; Open access publishing ; Patients ; People and Places ; Physicians ; Public health ; Risk factors ; Studies ; Surveys and Questionnaires ; Time Factors ; Tropical diseases ; Tuberculosis</subject><ispartof>PLoS neglected tropical diseases, 2017-01, Vol.11 (1), p.e0005192</ispartof><rights>COPYRIGHT 2017 Public Library of Science</rights><rights>2017 Public Library of Science. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited: Muthuvel T, Govindarajulu S, Isaakidis P, Shewade HD, Rokade V, Singh R, et al. (2017) "I Wasted 3 Years, Thinking It's Not a Problem": Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study. PLoS Negl Trop Dis 11(1): e0005192. doi:10.1371/journal.pntd.0005192</rights><rights>2017 Muthuvel et al 2017 Muthuvel et al</rights><rights>2017 Public Library of Science. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited: Muthuvel T, Govindarajulu S, Isaakidis P, Shewade HD, Rokade V, Singh R, et al. (2017) "I Wasted 3 Years, Thinking It's Not a Problem": Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study. PLoS Negl Trop Dis 11(1): e0005192. doi:10.1371/journal.pntd.0005192</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c624t-6f56b6242a87d35f648c6e7bf4eb21b2a560ab737f28838347dd94581c51f0753</citedby><cites>FETCH-LOGICAL-c624t-6f56b6242a87d35f648c6e7bf4eb21b2a560ab737f28838347dd94581c51f0753</cites><orcidid>0000-0002-6973-2395</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5230757/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5230757/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,860,881,2096,2915,23847,27903,27904,53768,53770,79345,79346</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/28081131$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><contributor>Johnson, Christian</contributor><creatorcontrib>Muthuvel, Thirumugam</creatorcontrib><creatorcontrib>Govindarajulu, Srinivas</creatorcontrib><creatorcontrib>Isaakidis, Petros</creatorcontrib><creatorcontrib>Shewade, Hemant Deepak</creatorcontrib><creatorcontrib>Rokade, Vasudev</creatorcontrib><creatorcontrib>Singh, Rajbir</creatorcontrib><creatorcontrib>Kamble, Sanjeev</creatorcontrib><title>"I Wasted 3 Years, Thinking It's Not a Problem": Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study</title><title>PLoS neglected tropical diseases</title><addtitle>PLoS Negl Trop Dis</addtitle><description>Worldwide, leprosy is one of the major causes of preventable disability. India contributes to 60% of global leprosy burden. With increasing numbers of leprosy with grade 2 disability (visible disability) at diagnosis, we aimed to determine risk factors associated with grade 2 disability among new cases and explore patients and providers' perspectives into reasons for late presentation.
This was an explanatory mixed-methods study where the quantitative component, a matched case-control design, was followed by a qualitative component. A total of 70 cases (grade 2 disability) and 140 controls (grade 0) matched for age and sex were randomly sampled from new patients registered between January 2013-January 2015 in three districts of Maharashtra (Mumbai, Thane and Amaravati) and interviewed using a structured close ended questionnaire. Eight public health care providers involved in leprosy care and 7 leprosy patients were purposively selected (maximum variation sampling) and interviewed using a structured open-ended interview schedule. Among cases, overall median (IQR) diagnosis delay in months was 17.9(7-30); patient and health system delay was 7(4-16.5) and 5.5(0.9-12.5) respectively; this was significantly higher than the delay in controls. Reasons for delayed presentation identified by the quantitative and qualitative data were: poor awareness of leprosy symptoms, first health care provider visited being private practitioners who were not aware about provision of free leprosy treatment at public health care facilities, reduced engagement and capacity of the general health care system in leprosy control.
Raising awareness in communities and health care providers regarding early leprosy symptoms, engagement of private health care provider in early leprosy diagnosis and increasing capacity of general health system staff, especially targeting high endemic areas that are hotspots for leprosy transmission may help in reducing diagnosis delays.</description><subject>Adult</subject><subject>Analysis</subject><subject>Awareness</subject><subject>Case-Control Studies</subject><subject>Diagnosis</subject><subject>Disability</subject><subject>Evaluation Studies as Topic</subject><subject>Female</subject><subject>Funding</subject><subject>Health care</subject><subject>Health Knowledge, Attitudes, Practice</subject><subject>Health Personnel - psychology</subject><subject>Health risk assessment</subject><subject>Health services</subject><subject>Humans</subject><subject>India</subject><subject>Interviews</subject><subject>Leprosy</subject><subject>Leprosy - diagnosis</subject><subject>Leprosy - psychology</subject><subject>Lung diseases</subject><subject>Male</subject><subject>Medicine and Health Sciences</subject><subject>Methods</subject><subject>Middle Aged</subject><subject>Open access publishing</subject><subject>Patients</subject><subject>People and Places</subject><subject>Physicians</subject><subject>Public health</subject><subject>Risk factors</subject><subject>Studies</subject><subject>Surveys and Questionnaires</subject><subject>Time Factors</subject><subject>Tropical diseases</subject><subject>Tuberculosis</subject><issn>1935-2735</issn><issn>1935-2727</issn><issn>1935-2735</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2017</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><sourceid>DOA</sourceid><recordid>eNptUl1v0zAUjRCIjcI_QGANCXigJf6KnT0gVRuwSh1M2hDiyXJsp3VJ7BK7iP4E_jVum00tmvxg6_jcc8-9Oln2HOYjiBl8v_CrzslmtHRRj_I8p7BED7JjWGI6RAzTh3vvo-xJCIvEKSmHj7MjxHMOIYbH2d-TCfguQzQaYPDDyC68Azdz635aNwOT-CaALz4CCa46XzWmPTkFVzJa4xLmNLgwsolzcL1OAi04N41cB2AdOLdy5nywAfgaTM2y82G9wSdOW3kKxuDS_jF6eGni3OsAruNKr59mj2rZBPOsvwfZt08fb84uhtOvnydn4-lQFYjEYVHTokovJDnTmNYF4aowrKqJqRCskKRFLiuGWY04xxwTpnVJ0tiKwjpnFA-ylzvdZeOD6LcYBORFSRHjlCfGZMfQXi7EsrOt7NbCSyu2gO9mQnbRqsYIWtaKEkwKShApECsrzlHFCKRUKa500vrQd1tVrdEqba6TzYHo4Y-zczHzvwVFOLllSeBtL9D5XysTomhtUKZppDN-tfUNSZGXycUge_Uf9f7petZMpgGsq33qqzaiYkxKzGHB803b0T2sdLRprfLO1DbhBwWv9wrm22AE36yi9S4cEsmOqFIqQmfqu2XAXGySfetabJIt-mSnshf7i7wruo0y_gd58vGX</recordid><startdate>20170112</startdate><enddate>20170112</enddate><creator>Muthuvel, Thirumugam</creator><creator>Govindarajulu, Srinivas</creator><creator>Isaakidis, Petros</creator><creator>Shewade, Hemant Deepak</creator><creator>Rokade, Vasudev</creator><creator>Singh, Rajbir</creator><creator>Kamble, Sanjeev</creator><general>Public Library of Science</general><general>Public Library of Science (PLoS)</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7QL</scope><scope>7SS</scope><scope>7T2</scope><scope>7T7</scope><scope>7U9</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8C1</scope><scope>8FD</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AEUYN</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>C1K</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>F1W</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>H94</scope><scope>H95</scope><scope>H97</scope><scope>K9.</scope><scope>L.G</scope><scope>M0S</scope><scope>M1P</scope><scope>M7N</scope><scope>P64</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>7X8</scope><scope>5PM</scope><scope>DOA</scope><orcidid>https://orcid.org/0000-0002-6973-2395</orcidid></search><sort><creationdate>20170112</creationdate><title>"I Wasted 3 Years, Thinking It's Not a Problem": Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study</title><author>Muthuvel, Thirumugam ; Govindarajulu, Srinivas ; Isaakidis, Petros ; Shewade, Hemant Deepak ; Rokade, Vasudev ; Singh, Rajbir ; Kamble, Sanjeev</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c624t-6f56b6242a87d35f648c6e7bf4eb21b2a560ab737f28838347dd94581c51f0753</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2017</creationdate><topic>Adult</topic><topic>Analysis</topic><topic>Awareness</topic><topic>Case-Control Studies</topic><topic>Diagnosis</topic><topic>Disability</topic><topic>Evaluation Studies as Topic</topic><topic>Female</topic><topic>Funding</topic><topic>Health care</topic><topic>Health Knowledge, Attitudes, Practice</topic><topic>Health Personnel - 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India contributes to 60% of global leprosy burden. With increasing numbers of leprosy with grade 2 disability (visible disability) at diagnosis, we aimed to determine risk factors associated with grade 2 disability among new cases and explore patients and providers' perspectives into reasons for late presentation.
This was an explanatory mixed-methods study where the quantitative component, a matched case-control design, was followed by a qualitative component. A total of 70 cases (grade 2 disability) and 140 controls (grade 0) matched for age and sex were randomly sampled from new patients registered between January 2013-January 2015 in three districts of Maharashtra (Mumbai, Thane and Amaravati) and interviewed using a structured close ended questionnaire. Eight public health care providers involved in leprosy care and 7 leprosy patients were purposively selected (maximum variation sampling) and interviewed using a structured open-ended interview schedule. Among cases, overall median (IQR) diagnosis delay in months was 17.9(7-30); patient and health system delay was 7(4-16.5) and 5.5(0.9-12.5) respectively; this was significantly higher than the delay in controls. Reasons for delayed presentation identified by the quantitative and qualitative data were: poor awareness of leprosy symptoms, first health care provider visited being private practitioners who were not aware about provision of free leprosy treatment at public health care facilities, reduced engagement and capacity of the general health care system in leprosy control.
Raising awareness in communities and health care providers regarding early leprosy symptoms, engagement of private health care provider in early leprosy diagnosis and increasing capacity of general health system staff, especially targeting high endemic areas that are hotspots for leprosy transmission may help in reducing diagnosis delays.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>28081131</pmid><doi>10.1371/journal.pntd.0005192</doi><orcidid>https://orcid.org/0000-0002-6973-2395</orcidid><oa>free_for_read</oa></addata></record> |
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| ispartof | PLoS neglected tropical diseases, 2017-01, Vol.11 (1), p.e0005192 |
| issn | 1935-2735 1935-2727 1935-2735 |
| language | eng |
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| source | MEDLINE; DOAJ Directory of Open Access Journals; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; PubMed Central; PubMed Central Open Access; Public Library of Science (PLoS) |
| subjects | Adult Analysis Awareness Case-Control Studies Diagnosis Disability Evaluation Studies as Topic Female Funding Health care Health Knowledge, Attitudes, Practice Health Personnel - psychology Health risk assessment Health services Humans India Interviews Leprosy Leprosy - diagnosis Leprosy - psychology Lung diseases Male Medicine and Health Sciences Methods Middle Aged Open access publishing Patients People and Places Physicians Public health Risk factors Studies Surveys and Questionnaires Time Factors Tropical diseases Tuberculosis |
| title | "I Wasted 3 Years, Thinking It's Not a Problem": Patient and Health System Delays in Diagnosis of Leprosy in India: A Mixed-Methods Study |
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