Rare disease in Malaysia: Challenges and solutions.
<h4>Objective</h4>Rare diseases are often underdiagnosed, and their management is frequently complicated by a lack of access to treatment and information about the diseases. To allow for better policy planning, we sought to examine the current status of managing rare diseases in Malaysia...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Public Library of Science (PLoS)
2020-01-01
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| Series: | PLoS ONE |
| Online Access: | https://doi.org/10.1371/journal.pone.0230850 |
| _version_ | 1811281071267905536 |
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| author | Asrul Akmal Shafie Azuwana Supian Mohamed Azmi Ahmad Hassali Lock-Hock Ngu Meow-Keong Thong Hatijah Ayob Nathorn Chaiyakunapruk |
| author_facet | Asrul Akmal Shafie Azuwana Supian Mohamed Azmi Ahmad Hassali Lock-Hock Ngu Meow-Keong Thong Hatijah Ayob Nathorn Chaiyakunapruk |
| author_sort | Asrul Akmal Shafie |
| collection | DOAJ |
| description | <h4>Objective</h4>Rare diseases are often underdiagnosed, and their management is frequently complicated by a lack of access to treatment and information about the diseases. To allow for better policy planning, we sought to examine the current status of managing rare diseases in Malaysia.<h4>Methods</h4>This study was conducted in two phases. In the first phase, we triangulated information from reviews of journal publications, documents from the Malaysian government and in-depth interviews among selected key healthcare stakeholders in Malaysia. The second phase was designed as a cross-sectional survey to estimate the number of cases and treatment coverage for rare diseases in Malaysia.<h4>Results</h4>Malaysia has no official definition of rare disease yet but currently in the process of reviewing them for Malaysia. There are 13 rare disease specialists and a dozen medical doctors in genetic clinics around Malaysia, mainly in public health facilities. From the survey, 1,249 patients were diagnosed with rare diseases in public hospitals. Only 60% received their medications or supplements, and the rest continued with symptomatic treatment.<h4>Conclusion</h4>Generally, Malaysia has made significant progress in the management of rare diseases, but there are still opportunities for development in critical areas. Ultimately, if all healthcare providers, government, society, and politicians work together to manage rare diseases, we will see an improvement in patient outcomes. |
| first_indexed | 2024-04-13T01:25:54Z |
| format | Article |
| id | doaj.art-d9f27a74728f490a888f7f16e712d210 |
| institution | Directory Open Access Journal |
| issn | 1932-6203 |
| language | English |
| last_indexed | 2024-04-13T01:25:54Z |
| publishDate | 2020-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj.art-d9f27a74728f490a888f7f16e712d2102022-12-22T03:08:38ZengPublic Library of Science (PLoS)PLoS ONE1932-62032020-01-01154e023085010.1371/journal.pone.0230850Rare disease in Malaysia: Challenges and solutions.Asrul Akmal ShafieAzuwana SupianMohamed Azmi Ahmad HassaliLock-Hock NguMeow-Keong ThongHatijah AyobNathorn Chaiyakunapruk<h4>Objective</h4>Rare diseases are often underdiagnosed, and their management is frequently complicated by a lack of access to treatment and information about the diseases. To allow for better policy planning, we sought to examine the current status of managing rare diseases in Malaysia.<h4>Methods</h4>This study was conducted in two phases. In the first phase, we triangulated information from reviews of journal publications, documents from the Malaysian government and in-depth interviews among selected key healthcare stakeholders in Malaysia. The second phase was designed as a cross-sectional survey to estimate the number of cases and treatment coverage for rare diseases in Malaysia.<h4>Results</h4>Malaysia has no official definition of rare disease yet but currently in the process of reviewing them for Malaysia. There are 13 rare disease specialists and a dozen medical doctors in genetic clinics around Malaysia, mainly in public health facilities. From the survey, 1,249 patients were diagnosed with rare diseases in public hospitals. Only 60% received their medications or supplements, and the rest continued with symptomatic treatment.<h4>Conclusion</h4>Generally, Malaysia has made significant progress in the management of rare diseases, but there are still opportunities for development in critical areas. Ultimately, if all healthcare providers, government, society, and politicians work together to manage rare diseases, we will see an improvement in patient outcomes.https://doi.org/10.1371/journal.pone.0230850 |
| spellingShingle | Asrul Akmal Shafie Azuwana Supian Mohamed Azmi Ahmad Hassali Lock-Hock Ngu Meow-Keong Thong Hatijah Ayob Nathorn Chaiyakunapruk Rare disease in Malaysia: Challenges and solutions. PLoS ONE |
| title | Rare disease in Malaysia: Challenges and solutions. |
| title_full | Rare disease in Malaysia: Challenges and solutions. |
| title_fullStr | Rare disease in Malaysia: Challenges and solutions. |
| title_full_unstemmed | Rare disease in Malaysia: Challenges and solutions. |
| title_short | Rare disease in Malaysia: Challenges and solutions. |
| title_sort | rare disease in malaysia challenges and solutions |
| url | https://doi.org/10.1371/journal.pone.0230850 |
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