{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,16]],"date-time":"2026-04-16T05:33:20Z","timestamp":1776317600197,"version":"3.50.1"},"reference-count":43,"publisher":"Public Library of Science (PLoS)","issue":"2","license":[{"start":{"date-parts":[[2025,2,25]],"date-time":"2025-02-25T00:00:00Z","timestamp":1740441600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Novartis Pharma AG","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}]},{"DOI":"10.13039\/100009010","name":"Novartis Pharmaceuticals UK Limited","doi-asserted-by":"publisher","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}],"id":[{"id":"10.13039\/100009010","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosntds.org"],"crossmark-restriction":false},"short-container-title":["PLoS Negl Trop Dis"],"abstract":"<jats:sec id=\"sec040\">\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>\n                      Visceral leishmaniasis (VL) is a vector-borne disease caused by\n                      <jats:italic>Leishmania<\/jats:italic>\n                      parasites and transmitted by sand fly bites, targeted for elimination in India. VL primarily affects rural, low-income populations with limited health care access. In South Asia, few studies have explored patients\u2019 perspectives, diagnoses, and treatment experiences; particularly lacking an understanding about the patients\u2019 life experiences outside of clinical research settings.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec041\">\n                    <jats:title>Methodology\/principal findings<\/jats:title>\n                    <jats:p>A qualitative study was conducted in Bihar, India, using moderator-facilitated, protocol-defined discussion. Eighteen adult patients and 12 caregivers of children diagnosed with and treated for VL within the last 12 months were identified by self-report. Mean time from symptom onset to diagnosis was 13.8 days. Challenges of the early patient life experience included lack of urgency by health care professionals, delayed diagnosis, and no guarantee of treatment at the location of their VL diagnosis (63% had to switch to a different center for treatment, at times delaying treatment). Key barriers identified in previous studies that were re-confirmed in this study include out-of-pocket financial burden, absence from work\/home duties, and long-distance travel to hospitals. Patients and caregivers (n = 29\/30) expressed a preference for a potential oral treatment that could be taken close to home.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec042\">\n                    <jats:title>Conclusions\/significance<\/jats:title>\n                    <jats:p>This study reveals new insights about the patient life experience and reconfirms previous research indicating that access to care for patients with VL in the Bihar area remains a challenge. Although most patients with VL seek care early, diagnosis often requires multiple visits to a health care facility. Despite access to therapy in public hospitals, some patients reported a preference for private care. Even if diagnosis takes place in a government-funded public setting, some patients reported needing to move from the location of diagnosis to another center to receive therapy, creating an additional burden for patients. As a potential alternative to current parenteral treatment, adult patients and caregivers of pediatric patients expressed interest in a potential oral therapy because it may reduce barriers to access care.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pntd.0012326","type":"journal-article","created":{"date-parts":[[2025,2,25]],"date-time":"2025-02-25T13:45:43Z","timestamp":1740491143000},"page":"e0012326","update-policy":"https:\/\/doi.org\/10.1371\/journal.pntd.corrections_policy","source":"Crossref","is-referenced-by-count":1,"title":["Patient insights research exploring disease awareness, patient life experience, and current management of visceral leishmaniasis in Bihar, India"],"prefix":"10.1371","volume":"19","author":[{"given":"Shyam","family":"Sundar","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fabiana","family":"Alves","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Koert","family":"Ritmeijer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Margriet","family":"den Boer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Colin","family":"Forsyth","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bethan","family":"Hughes","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Clare","family":"Zamble","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kirsten","family":"Carter","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-6810-188X","authenticated-orcid":true,"given":"Gerhild","family":"Angyalosi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2025,2,25]]},"reference":[{"key":"pntd.0012326.ref001","year":"2020"},{"key":"pntd.0012326.ref002","author":"World Health Organization"},{"key":"pntd.0012326.ref003","author":"World Health Organization","year":"2021"},{"issue":"4","key":"pntd.0012326.ref004","doi-asserted-by":"crossref","first-page":"877","DOI":"10.1007\/s12639-021-01375-0","article-title":"India\u2019s performance in controlling Visceral Leishmaniasis as compared to Brazil over past three decades: findings from global burden of disease study","volume":"45","author":"D Dhamnetiya","year":"2021","journal-title":"J Parasit Dis"},{"key":"pntd.0012326.ref005","doi-asserted-by":"crossref","first-page":"1236952","DOI":"10.3389\/fimmu.2023.1236952","article-title":"Post kala-azar dermal leishmaniasis in the Indian sub-continent: challenges and strategies for elimination","volume":"14","author":"A Kumar","year":"2023","journal-title":"Front Immunol"},{"key":"pntd.0012326.ref006","author":"World Health Organization"},{"key":"pntd.0012326.ref007","year":"2024"},{"key":"pntd.0012326.ref008","year":"2021"},{"key":"pntd.0012326.ref009","year":"2024"},{"key":"pntd.0012326.ref010","author":"National Center for Vector Borne Diseases Control"},{"issue":"10","key":"pntd.0012326.ref011","doi-asserted-by":"crossref","first-page":"e0010347","DOI":"10.1371\/journal.pntd.0010347","article-title":"Livestock and rodents within an endemic focus of visceral leishmaniasis are not reservoir hosts for leishmania donovani","volume":"16","author":"AK Kushwaha","year":"2022","journal-title":"PLoS NeglTrop Dis"},{"issue":"11","key":"pntd.0012326.ref012","doi-asserted-by":"crossref","first-page":"805","DOI":"10.1080\/14787210.2018.1532790","article-title":"Visceral leishmaniasis elimination targets in India, strategies for preventing resurgence","volume":"16","author":"S Sundar","year":"2018","journal-title":"Expert Rev Anti Infect Ther"},{"issue":"1","key":"pntd.0012326.ref013","doi-asserted-by":"crossref","first-page":"24","DOI":"10.4103\/ijd.IJD_602_20","article-title":"Post kala-azar dermal Leishmaniasis: clinical features and differential diagnosis","volume":"66","author":"P Kumar","year":"2021","journal-title":"Indian J Dermatol"},{"issue":"1","key":"pntd.0012326.ref014","doi-asserted-by":"crossref","first-page":"52","DOI":"10.1186\/s13071-020-04551-y","article-title":"Visceral leishmaniasis outbreaks in Bihar: community-level investigations in the context of elimination of kala-azar as a public health problem","volume":"14","author":"K Priyamvada","year":"2021","journal-title":"Parasit Vectors"},{"issue":"Suppl 2","key":"pntd.0012326.ref015","doi-asserted-by":"crossref","first-page":"50","DOI":"10.1111\/j.1365-3156.2010.02520.x","article-title":"Household cost-of-illness of visceral leishmaniasis in Bihar, India","volume":"15","author":"S Sundar","year":"2010","journal-title":"Trop Med Int Health"},{"key":"pntd.0012326.ref016","author":"National Center for Vector Borne Diseases Control"},{"key":"pntd.0012326.ref017","doi-asserted-by":"crossref","first-page":"19","DOI":"10.1186\/s40249-016-0112-2","article-title":"Current challenges in treatment options for visceral leishmaniasis in India: a public health perspective","volume":"5","author":"OP Singh","year":"2016","journal-title":"Infect Dis Poverty"},{"issue":"5","key":"pntd.0012326.ref018","doi-asserted-by":"crossref","first-page":"757","DOI":"10.1111\/j.1365-3156.2006.01604.x","article-title":"The economic impact of visceral leishmaniasis on households in Bangladesh","volume":"11","author":"D Anoopa Sharma","year":"2006","journal-title":"Trop Med Int Health"},{"issue":"3","key":"pntd.0012326.ref019","doi-asserted-by":"crossref","first-page":"528","DOI":"10.4269\/ajtmh.2011.10-0683","article-title":"Economic consequences of post-kala-azar dermal leishmaniasis in a rural Bangladeshi community","volume":"85","author":"M Ozaki","year":"2011","journal-title":"Am J Trop Med Hyg"},{"issue":"3","key":"pntd.0012326.ref020","doi-asserted-by":"crossref","first-page":"857","DOI":"10.4269\/ajtmh.16-0978","article-title":"Assessing knowledge, attitudes, and preventive practices related to kala-a: a study of rural Madhepura, Bihar, India","volume":"98","author":"D Govil","year":"2018","journal-title":"Am J Trop Med Hyg"},{"issue":"6","key":"pntd.0012326.ref021","doi-asserted-by":"crossref","first-page":"e0007457","DOI":"10.1371\/journal.pntd.0007457","article-title":"\u201cIt\u2019s just a fever\u201d: gender based barriers to care-seeking for visceral leishmaniasis in highly endemic districts of India: a qualitative study","volume":"13","author":"B Jayakumar","year":"2019","journal-title":"PLoS NeglTrop Dis"},{"issue":"2","key":"pntd.0012326.ref022","doi-asserted-by":"crossref","first-page":"192","DOI":"10.1111\/tmi.13189","article-title":"Barriers of visceral leishmaniasis reporting and surveillance in Nepal: comparison of governmental VL-program districts with non-program districts","volume":"24","author":"D Lim","year":"2019","journal-title":"Trop Med Int Health"},{"issue":"7580","key":"pntd.0012326.ref023","doi-asserted-by":"crossref","first-page":"S102","DOI":"10.1038\/nature16042","article-title":"Health-seeking behaviour, diagnostics and transmission dynamics in the control of visceral leishmaniasis in the Indian subcontinent","volume":"528","author":"GF Medley","year":"2015","journal-title":"Nature"},{"issue":"11","key":"pntd.0012326.ref024","doi-asserted-by":"crossref","first-page":"1715","DOI":"10.1111\/j.1365-3156.2006.01732.x","article-title":"Costs of patient management of visceral leishmaniasis in Muzaffarpur, Bihar, India","volume":"11","author":"F Meheus","year":"2006","journal-title":"Trop Med Int Health"},{"issue":"1","key":"pntd.0012326.ref025","doi-asserted-by":"crossref","first-page":"53","DOI":"10.1186\/s12955-019-1112-2","article-title":"Assessment of quality of life using WHOQOL-BREF in patients with visceral leishmaniasis","volume":"17","author":"RB Veeri","year":"2019","journal-title":"Health Qual Life Outcomes"},{"issue":"2","key":"pntd.0012326.ref026","doi-asserted-by":"crossref","first-page":"e0227911","DOI":"10.1371\/journal.pone.0227911","article-title":"Quality of life perceptions amongst patients co-infected with Visceral Leishmaniasis and HIV: a qualitative study from Bihar, India","volume":"15","author":"M Nair","year":"2020","journal-title":"PLoS One"},{"key":"pntd.0012326.ref027","author":"World Health Organization"},{"issue":"4","key":"pntd.0012326.ref028","doi-asserted-by":"crossref","first-page":"922","DOI":"10.1016\/j.xphs.2023.01.029","article-title":"Patient-centric product development: a summary of select regulatory CMC and device considerations","volume":"112","author":"M Algorri","year":"2023","journal-title":"J Pharm Sci"},{"key":"pntd.0012326.ref029","author":"Novartis","year":"2024"},{"key":"pntd.0012326.ref030","author":"World Health Organization","year":"2023"},{"key":"pntd.0012326.ref031","doi-asserted-by":"crossref","first-page":"114523","DOI":"10.1016\/j.socscimed.2021.114523","article-title":"Sample sizes for saturation in qualitative research: a systematic review of empirical tests","volume":"292","author":"M Hennink","year":"2022","journal-title":"Soc Sci Med"},{"issue":"2","key":"pntd.0012326.ref032","doi-asserted-by":"crossref","first-page":"133","DOI":"10.4103\/JME.JME_59_24","article-title":"Navigating sample size estimation for qaualitative research","volume":"5","author":"SK Sharma","year":"2024","journal-title":"J Med Evid"},{"key":"pntd.0012326.ref033","doi-asserted-by":"crossref","DOI":"10.4135\/9781848607941","volume-title":"The SAGE handbook of grounded theory.","author":"A Bryant","year":"2007"},{"key":"pntd.0012326.ref034","author":"Media Research Users Council India"},{"key":"pntd.0012326.ref035","first-page":"135","article-title":"Vulnerabilities to and the socioeconomic and psychosocial impacts of the leishmaniases: a review","volume":"12","author":"G Grifferty","year":"2021","journal-title":"Res Rep Trop Med"},{"key":"pntd.0012326.ref036","doi-asserted-by":"crossref","first-page":"101504","DOI":"10.1016\/j.cegh.2023.101504","article-title":"Prevalence of HIV infection among visceral leishmaniasis patients in India: a systematic review and meta-analysis","volume":"25","author":"R Kaur","year":"2024","journal-title":"Clin Epidemiol Glob Health"},{"key":"pntd.0012326.ref037","first-page":"267","article-title":"Kala-azar in India \u2013 progress and challenges towards its elimination as a public health problem","volume":"26","author":"N Gill","year":"2021","journal-title":"Wkly Epidemiol Rec"},{"key":"pntd.0012326.ref038","unstructured":"Ministry of health & family welfare government of India Disease control programme annual report 2016-2017. 2016. [cited 2024 Feb 2026]. Available from: chrome-extension:\/\/efaidnbmnnnibpcajpcglclefindmkaj\/https:\/\/main.mohfw.gov.in\/sites\/default\/files\/5201617.pdf."},{"issue":"5","key":"pntd.0012326.ref039","doi-asserted-by":"crossref","first-page":"e420","DOI":"10.1016\/S2666-5247(24)00028-4","article-title":"Bangladesh eliminates visceral leishmaniasis","volume":"5","author":"N Nagi","year":"2024","journal-title":"Lancet Microbe"},{"issue":"2","key":"pntd.0012326.ref040","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1093\/cid\/ciy891","article-title":"Quantifying the infectiousness of post-kala-azar dermal leishmaniasis toward sand flies","volume":"69","author":"D Mondal","year":"2019","journal-title":"Clin Infect Dis"},{"issue":"1","key":"pntd.0012326.ref041","doi-asserted-by":"crossref","first-page":"e23","DOI":"10.1016\/S2666-5247(20)30166-X","article-title":"Xenodiagnosis to evaluate the infectiousness of humans to sandflies in an area endemic for visceral leishmaniasis in Bihar, India: a transmission-dynamics study","volume":"2","author":"OP Singh","year":"2021","journal-title":"Lancet Microbe"},{"issue":"1","key":"pntd.0012326.ref042","doi-asserted-by":"crossref","first-page":"e355","DOI":"10.1371\/journal.pntd.0000355","article-title":"Visceral leishmaniasis elimination programme in India, Bangladesh, and Nepal: reshaping the case finding\/case management strategy","volume":"3","author":"D Mondal","year":"2009","journal-title":"PLoS Negl Trop Dis"},{"issue":"1","key":"pntd.0012326.ref043","doi-asserted-by":"crossref","first-page":"148","DOI":"10.1186\/s12955-017-0720-y","article-title":"Assessment of quality of life in patients with post kalaazar dermal leishmaniasis","volume":"15","author":"B Pal","year":"2017","journal-title":"Health Qual Life Outcomes"}],"container-title":["PLOS Neglected Tropical Diseases"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pntd.0012326","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,2,25]],"date-time":"2025-02-25T13:45:55Z","timestamp":1740491155000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pntd.0012326"}},"subtitle":[],"editor":[{"given":"Clarence","family":"Mang'era","sequence":"first","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2025,2,25]]},"references-count":43,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2025,2,25]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pntd.0012326","relation":{"has-preprint":[{"id-type":"doi","id":"10.1101\/2024.07.11.24309649","asserted-by":"object"}]},"ISSN":["1935-2735"],"issn-type":[{"value":"1935-2735","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,2,25]]}}}