Descriptive review of the health supervision received by children with Down syndrome at Worcester Provincial Hospital from 2010 to 2015

Schoonraad, Leilah (2018-08)

Thesis (MMed)--Stellenbosch University, 2018.

Thesis

ENGLISH ABSTRACT: Background: In 2011, the American Academy of Paediatrics (AAP) published revised guidelines for health supervision of children with Down syndrome (DS). In the absence of South African guidelines, we described the health supervision received by children with DS at a regional (level 2) Western Cape Hospital and compared it to the AAP guidelines. Methods: This was a 5 year retrospective description of implementation of the 2011 AAP recommendations at the DS clinic at Worcester Provincial Hospital (WPH), specifically related to cardiac, thyroid, hearing and haematological disorders. Data was extracted from patient medical folders and the National Health Laboratory Database. The proportion receiving screening components was compared between the children using WPH as their primary care facility and children referred from peripheral hospitals. Results: Sixty-two children received care at WPH DS clinic during the study period. Thirty-six (58%) children lived in Worcester while 26 (42%) were referred from peripheral hospitals. The median age at first clinic visit was 0.5 years (interquartile range (IQR) 0.2-1.2), there was a total of 177 person-years of follow up with a median duration of follow up of 1.8 years (IQR 0.3-4.8) and 2 deaths occurred in the study period. Forty nine children (79%) had a screening echocardiogram performed, the median age at first echocardiogram was 0.8 years (IQR 0.2-1.4). Five (13.9%) children from WPH compared to no children from the peripheral hospitals received the echocardiogram within the first month of life (p =0.056). Those requiring cardiac surgery were operated on at a median age of 2years (IQR 0.9-2.3). Compared to the AAP recommendations, within the first month of life 17 (27.4%) children had a thyroid screen, 20 (32.3%) children had a full blood count and 7 (11.3%) children had a hearing assessment. Conclusion: AAP recommendations for health supervision in DS are challenging to achieve within our local health system. The development and advocacy for a South African DS health supervision guideline might improve the care of children with DS.

AFRIKAANSE OPSOMMING: Agtergrond: In 2011 het die Amerikaanse Akademie vir Pediatrie (AAP) gewysigde riglyne oor gesondheidtoesig vir kinders met Down sindroom (DS) gepubliseer. In die afwesigheid van Suid-Afrikaanse riglyne het ons die gesondheidtoesig omskryf wat kinders met DS op streekvlak (vlak 2) by ‘n Wes-Kaapse-hospitaal ontvang het en dit met die AAP se riglyne vergelyk. Metodes: ’n Vyfjaar- retrospektiewe beskrywing van die implementering van die 2011 AAP-aanbevelings by die DS-kliniek van die Worcester Provinsiale Hospitaal (WPH), spesifiek met betrekking tot kardiologiese, tiroïed-, gehoor- en hematologiese versteurings, is gedoen. Data is uit pasiëntlêers en die Databasis van die Nasionale Gesondheidslaboratorium ingewin. Die proporsie van pasiënte wat siftingskomponente ontvang het, is vergelyk tussen die kinders wat WPH as hulle primêresorgfasiliteit gebruik het en kinders wat van perifere hospitale daarheen verwys is. Resultate: Twee-en-sestig kinders het tydens die studietydperk sorg by die WPH se DS-kliniek ontvang. Ses-endertig (58%) kinders het in Worcester gewoon, terwyl 26 (42%) deur perifere hospitale daarheen verwys is. Die mediaanouderdom by die eerste kliniekbesoek was 0.5 jaar (interkwartielafwyking (IQR) 0.2-1.2), daar was opvolg van altesaam 177 mensjare, met ’n mediaanopvolgduur van 1.8 jaar (IQR 0.3-4.8), terwyl 2 sterftes in die studietydperk voorgekom het. Nege-en-veertig kinders (79%) het ’n siftingseggokardiogram ondergaan, en die mediaanouderdom tydens die eerste eggokardiogram was 0.8 jaar (IQR 0.2-1.4). Vyf (13.9%) kinders van WPH, in vergelyking met geen kinders van perifere hospitale, het die eggokardiogram in hul eerste lewensmaand ontvang (p=0.056). Diegene wat hartoperasies benodig het, is op ’n mediaanouderdom van 2 jaar (IQR 0.9-2.3) geopereer. In vergelyking met die AAPaanbevelings, het 17 (27.4%) kinders in die eerste lewensmaand ’n tiroïedsifting ondergaan, 20 (32.3%) kinders het ’n volbloedtelling gehad en 7 (11.3%) kinders het ’n gehoortoets ondergaan. Gevolgtrekking: Die AAP-aanbevelings vir gesondheidtoesig in DS stel ’n uitdaging vir ons plaaslike gesondheidstelsel om na te kom. Die ontwikkeling van en aanbeveling vir ’n Suid-Afrikaanse DS-gesondheidtoesigriglyn kan moontlik die sorg van kinders met DS verbeter.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/105219
This item appears in the following collections: