The Outcomes of infants with Edward Syndrome and Patau Syndrome in a resource restricted environment
| dc.contributor.advisor | Van Wyk, Lizelle | en_ZA |
| dc.contributor.advisor | Bezuidenhout, Heidre | en_ZA |
| dc.contributor.author | Da Costa, A'ishah | en_ZA |
| dc.contributor.other | Stellenbosch University. Faculty of Medicine and Health Sciences. Dept. of Paediatrics and Child Health. | en_ZA |
| dc.date.accessioned | 2021-09-20T11:53:31Z | en_ZA |
| dc.date.accessioned | 2022-02-22T10:22:21Z | en_ZA |
| dc.date.available | 2021-09-20T11:53:31Z | en_ZA |
| dc.date.issued | 2021-12 | en_ZA |
| dc.description | Thesis (MMed) -- Stellenbosch University, 2021. | en_ZA |
| dc.description.abstract | ENGLISH ABSTRACT: Introduction: Edward and Patau syndrome are two of the more common neonatal aneuploidies. Few infants are documented as surviving past 18-months of age. We aim to describe the outcome and palliative care plans of infants with Edward and Patau syndrome admitted to a resource restricted hospital in Cape Town, South Africa. Methods: A retrospective descriptive review of neonates admitted to Tygerberg Hospital over a 5-year period (2013- 2018) was performed. Neonates with a presumptive diagnosis of Edward and Patau syndrome were included. Other trisomy and congenital disorders were excluded, as well as neonates with missing files. Results: Thirty-five neonates (Edward syndrome (n=22), Patau syndrome (n=13)) were included. The most common congenital abnormalities in Edward syndrome were limb (91%), ear (86%) and cardiac (73%) anomalies, and in Patau syndrome were limb (100%), head (92%) and ear (85%) anomalies. In-hospital mortality for Patau syndrome neonates was 61% with an overall-mortality of 84%. In-hospital mortality for Edward syndrome neonates was 45% with an overall-mortality of 77%. In-hospital palliation-only management was documented for 85% and 95% of neonates with Patau and Edward syndrome, respectively. However, post discharge/ transfer palliative care plans were only documented for 38% and 63% of neonates with Patau and Edward syndrome, respectively. Conclusion: This is the first study at Tygerberg Hospital, a resource restricted hospital, to describe the outcomes of neonates with Edward syndrome and Patau syndrome. The majority of neonates demised within the immediate neonatal period. Although in-hospital palliative care plans were well documented, post-discharge/ transfer palliative care plans were poorly documented. | en_ZA |
| dc.description.abstract | AFRIKAANS OPSOMMING: Inleiding: Edward en Patau sindroom is twee van die algemeenste neonatale aneuploidieë. Min babas leef verby 18 maande van ouderdom. Hierdie studie beskryf die uitkoms en palliatiewe sorg van babas met Edward en Patau sindroom, wat in ‘n hulpbron beperkte hospitaal in Kaapstad, Suid Afrika, toegelaat is. Metodes: Hierdie was ‘n retrospektiewe, beskrywende studie van neonate wat oor ‘n 5-jaar tydperk (2013- 2018) by Tygerberg hospital toegelaat is. Neonate met ‘n voorlopige diagnose van Edward of Patau sindroom was ingesluit. Neonate met ‘n ander trisomie en kongenitale kondisies was uitgesluit, asook neonate wie se mediese rekords onverkrygbaar was. Uitslae: Vyf-en-dertig neonate (Edward sindroom (n=22), Patau sindroom (n=13)) was ingesluit by die studie. Die algemeenste kongenitale abnormaliteite in neonate met Edward sindroom was ledemaat (91%), oor (86%) en hart (73%) abnormaliteite, en in neonate met Patau sindroom was dit ledemaat (100%), kop (92%) en oor (85%) abnormaliteite. Binne hospitaal sterftes was 61% vir babas met Patau sindroom met ‘n algehele sterftesyfer van 84%. Die binne-hospitaal sterftesyfer vir Edward sindroom was 45% met ‘n algehele sterftesyfer van 77%. Binne-hospitaal palliatiewe sorg was aangeteken in 85% en 95% van neonate met Patau en Edward syndrome, onderskeidelik. Ongelukkig, was net 38% en 63% van ontslag palliatiewe sorgplanne gedokumenteer vir neonate met Patau en Edward sindroom, onderskeidelik. Opsomming: Hierdie is die eerste studie wat die uitkomstes van babas met Patau en Edward sindroom beskryf, gebore in ‘n hulpbron beperkte hospital in Kaapstad, Suid Afrika. Die meeste babas is oorlede in die neonatale periode. Binne-hospitaal palliatiewe sorgplanne was goed gedokumenteer maar ontslag sorg en palliatiewe sorgplanne was nie gedokumenteerd nie. | af_ZA |
| dc.description.version | Masters | en_ZA |
| dc.embargo.terms | 2022-05-31 | en_ZA |
| dc.format.extent | 50 pages | en_ZA |
| dc.identifier.uri | http://hdl.handle.net/10019.1/124276 | en_ZA |
| dc.language.iso | en_ZA | en_ZA |
| dc.publisher | Stellenbosch : Stellenbosch University | en_ZA |
| dc.rights.holder | Stellenbosch University | en_ZA |
| dc.subject | Infants -- Diseases | en_ZA |
| dc.subject | Genetic disorders in children | en_ZA |
| dc.subject | Patau Syndrome | en_ZA |
| dc.subject | Resource restricted | en_ZA |
| dc.subject | Edward Syndrome | en_ZA |
| dc.subject | Neonatology | en_ZA |
| dc.subject | Palliative treatment | en_ZA |
| dc.title | The Outcomes of infants with Edward Syndrome and Patau Syndrome in a resource restricted environment | en_ZA |
| dc.type | Thesis | en_ZA |