The impact of COVID-19 on patients affected by rare diseases and congenital disorders in South Africa: A scoping review
Rare diseases (RDs) are individually rare but collectively common, affecting an estimated 1 in 15 individuals in South Africa (SA). Patients with an RD often face a long diagnostic odyssey (>5 years on average) and many obstacles in accessing healthcare. A scoping review was conducted to ass...
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| Format: | Article |
| Language: | English |
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South African Medical Association
2024-09-01
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| Series: | South African Medical Journal |
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| Online Access: | https://samajournals.co.za/index.php/samj/article/view/1795 |
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| _version_ | 1823860589557972992 |
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| author | M C M Gomes H L Malherbe |
| author_facet | M C M Gomes H L Malherbe |
| author_sort | M C M Gomes |
| collection | DOAJ |
| description |
Rare diseases (RDs) are individually rare but collectively common, affecting an estimated 1 in 15 individuals in South Africa (SA). Patients with an RD often face a long diagnostic odyssey (>5 years on average) and many obstacles in accessing healthcare. A scoping review was conducted to assess the impact of the COVID-19 pandemic on the SA RD community. Fourteen studies met the inclusion criteria and were explored using thematic analysis, which showed that RD patients were further marginalised during the pandemic, particularly in access to healthcare. Increased inclusivity in policy creation and integrated community-based healthcare are recommended to ensure that RD patients are not an afterthought in future crises.
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| format | Article |
| id | doaj-art-9a993afa0c11431ab853b56d139755f8 |
| institution | Kabale University |
| issn | 0256-9574 2078-5135 |
| language | English |
| publishDate | 2024-09-01 |
| publisher | South African Medical Association |
| record_format | Article |
| series | South African Medical Journal |
| spelling | doaj-art-9a993afa0c11431ab853b56d139755f82025-02-10T12:25:43ZengSouth African Medical AssociationSouth African Medical Journal0256-95742078-51352024-09-01114910.7196/SAMJ.2024.v114i9.1795The impact of COVID-19 on patients affected by rare diseases and congenital disorders in South Africa: A scoping reviewM C M Gomes0H L Malherbe1https://orcid.org/0000-0002-9566-6248Department of Clinical Medicine, Nelson R Mandela School of Medicine, College of Health Sciences, University of KwaZulu-Natal, Durban, South AfricaCentre for Human Metabolomics, North-West University, Potchefstroom, South Africa; Rare Diseases South Africa, Bryanston, South Africa Rare diseases (RDs) are individually rare but collectively common, affecting an estimated 1 in 15 individuals in South Africa (SA). Patients with an RD often face a long diagnostic odyssey (>5 years on average) and many obstacles in accessing healthcare. A scoping review was conducted to assess the impact of the COVID-19 pandemic on the SA RD community. Fourteen studies met the inclusion criteria and were explored using thematic analysis, which showed that RD patients were further marginalised during the pandemic, particularly in access to healthcare. Increased inclusivity in policy creation and integrated community-based healthcare are recommended to ensure that RD patients are not an afterthought in future crises. https://samajournals.co.za/index.php/samj/article/view/1795rare diseasescongenital disordersCOVID-19 pandemicdisability |
| spellingShingle | M C M Gomes H L Malherbe The impact of COVID-19 on patients affected by rare diseases and congenital disorders in South Africa: A scoping review South African Medical Journal rare diseases congenital disorders COVID-19 pandemic disability |
| title | The impact of COVID-19 on patients affected by rare diseases and congenital disorders in South Africa: A scoping review |
| title_full | The impact of COVID-19 on patients affected by rare diseases and congenital disorders in South Africa: A scoping review |
| title_fullStr | The impact of COVID-19 on patients affected by rare diseases and congenital disorders in South Africa: A scoping review |
| title_full_unstemmed | The impact of COVID-19 on patients affected by rare diseases and congenital disorders in South Africa: A scoping review |
| title_short | The impact of COVID-19 on patients affected by rare diseases and congenital disorders in South Africa: A scoping review |
| title_sort | impact of covid 19 on patients affected by rare diseases and congenital disorders in south africa a scoping review |
| topic | rare diseases congenital disorders COVID-19 pandemic disability |
| url | https://samajournals.co.za/index.php/samj/article/view/1795 |
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