A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka.
<h4>Objectives</h4>Our aim was to describe the numbers and distribution of patients with different types of thalassemia and to assess the standards of care in all thalassemia treatment centers throughout Sri Lanka and the success of the ongoing prevention programme.<h4>Methods</...
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doaj-a7a803911fcf42efb6d434bb61b19f3e2021-03-04T12:43:56ZengPublic Library of Science (PLoS)PLoS ONE1932-62032019-01-01148e022085210.1371/journal.pone.0220852A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka.Anuja P PremawardhanaRasnayaka MudiyanseShamila T De SilvaNilam JiffryUdaya NelumdeniyaUdaya de SilvaSanath P LamabadusuriyaK PushpakumaraRandima DissanayakaM JanszI RifayaUpul NavarathneV ThirukumaranMahinda ArambepolaWijesundara Dayanada BandaraU VaidyanathaDevan MendisK WeerasekaraNalika De SilvaD K Shantha KumaraSujeewa D AmarasenaK K HemanthaM A C M RefaiIshari SilvaNizri HameedF RajiyahSachith MettanandaAngela AllenDavid J WeatherallNancy F Oliveri<h4>Objectives</h4>Our aim was to describe the numbers and distribution of patients with different types of thalassemia and to assess the standards of care in all thalassemia treatment centers throughout Sri Lanka and the success of the ongoing prevention programme.<h4>Methods</h4>This cross-sectional island-wide survey was conducted by two trained medical graduates, who visited each thalassemia center to collect data from every patient, using a standardized form. Data was collected through review of patient registers and clinical records.<h4>Results</h4>We collected data on 1774 patients from 23 centers. 1219 patients (68.7%) had homozygous β-thalassemia, 360 patients (20.3%) had hemoglobin E β-thalassemia, and 50 patients (2%) had sickle β-thalassemia. There were unacceptably high serum ferritin levels in almost all centers. The annual number of births of patients with β-thalassaemia varied between 45-55, with little evidence of reduction over 19 years.<h4>Conclusions</h4>Central coordination of the treatment and ultimately prevention of thalassemia is urgently needed in Sri Lanka. Development of expert centers with designated staff with sufficient resources will improve the quality of care and is preferred to managing patients in multiple small units.https://doi.org/10.1371/journal.pone.0220852 |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Anuja P Premawardhana Rasnayaka Mudiyanse Shamila T De Silva Nilam Jiffry Udaya Nelumdeniya Udaya de Silva Sanath P Lamabadusuriya K Pushpakumara Randima Dissanayaka M Jansz I Rifaya Upul Navarathne V Thirukumaran Mahinda Arambepola Wijesundara Dayanada Bandara U Vaidyanatha Devan Mendis K Weerasekara Nalika De Silva D K Shantha Kumara Sujeewa D Amarasena K K Hemantha M A C M Refai Ishari Silva Nizri Hameed F Rajiyah Sachith Mettananda Angela Allen David J Weatherall Nancy F Oliveri |
spellingShingle |
Anuja P Premawardhana Rasnayaka Mudiyanse Shamila T De Silva Nilam Jiffry Udaya Nelumdeniya Udaya de Silva Sanath P Lamabadusuriya K Pushpakumara Randima Dissanayaka M Jansz I Rifaya Upul Navarathne V Thirukumaran Mahinda Arambepola Wijesundara Dayanada Bandara U Vaidyanatha Devan Mendis K Weerasekara Nalika De Silva D K Shantha Kumara Sujeewa D Amarasena K K Hemantha M A C M Refai Ishari Silva Nizri Hameed F Rajiyah Sachith Mettananda Angela Allen David J Weatherall Nancy F Oliveri A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka. PLoS ONE |
author_facet |
Anuja P Premawardhana Rasnayaka Mudiyanse Shamila T De Silva Nilam Jiffry Udaya Nelumdeniya Udaya de Silva Sanath P Lamabadusuriya K Pushpakumara Randima Dissanayaka M Jansz I Rifaya Upul Navarathne V Thirukumaran Mahinda Arambepola Wijesundara Dayanada Bandara U Vaidyanatha Devan Mendis K Weerasekara Nalika De Silva D K Shantha Kumara Sujeewa D Amarasena K K Hemantha M A C M Refai Ishari Silva Nizri Hameed F Rajiyah Sachith Mettananda Angela Allen David J Weatherall Nancy F Oliveri |
author_sort |
Anuja P Premawardhana |
title |
A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka. |
title_short |
A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka. |
title_full |
A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka. |
title_fullStr |
A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka. |
title_full_unstemmed |
A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka. |
title_sort |
nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in sri lanka. |
publisher |
Public Library of Science (PLoS) |
series |
PLoS ONE |
issn |
1932-6203 |
publishDate |
2019-01-01 |
description |
<h4>Objectives</h4>Our aim was to describe the numbers and distribution of patients with different types of thalassemia and to assess the standards of care in all thalassemia treatment centers throughout Sri Lanka and the success of the ongoing prevention programme.<h4>Methods</h4>This cross-sectional island-wide survey was conducted by two trained medical graduates, who visited each thalassemia center to collect data from every patient, using a standardized form. Data was collected through review of patient registers and clinical records.<h4>Results</h4>We collected data on 1774 patients from 23 centers. 1219 patients (68.7%) had homozygous β-thalassemia, 360 patients (20.3%) had hemoglobin E β-thalassemia, and 50 patients (2%) had sickle β-thalassemia. There were unacceptably high serum ferritin levels in almost all centers. The annual number of births of patients with β-thalassaemia varied between 45-55, with little evidence of reduction over 19 years.<h4>Conclusions</h4>Central coordination of the treatment and ultimately prevention of thalassemia is urgently needed in Sri Lanka. Development of expert centers with designated staff with sufficient resources will improve the quality of care and is preferred to managing patients in multiple small units. |
url |
https://doi.org/10.1371/journal.pone.0220852 |
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