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Abstract

Aim: To examine the long-term follow-up and health outcomes of patients who have undergone haematopoietic stem cell transplant (HSCT) forsevere combined immunodeficiency (SCID).Methods: Through a structured questionnaire, we examined follow-up arrangements and long-term health outcomes in 22 children who havehad a successful HSCT for SCID during the period of 1984–2012 at the Sydney Children’s Hospital, Sydney, Australia.Results: Most children considered themselves healthy and ‘cured’ from SCID. Whilst many children enjoy relatively good bio-social health out-comes, specific negative health outcomes and absenteeism from school were perceived negatively. Two-thirds of children see their general practi-tioner or specialist regularly; however, there did not appear to be consistency with the nature of this follow-up.Conclusion: The findings from our study highlight the comple x bio-psychosocial health needs of post-HSC T SCID childr en and encour age SCID centr es toconsider a multidisciplinary approach to their follow -up . Further studies into the determinants of patients’ perceptions of their health are needed.

Item Type:	Article
Authors/Creators:	Lee, AYS and Frith, K and Schneider, L and Ziegler, JB
Keywords:	haematopoietic stem cell transplant, immunology, outcomes, severe combined immunodeficiency
Journal or Publication Title:	Journal of Paediatrics and Child Health
Publisher:	Blackwell Scientific Publications
ISSN:	1034-4810
DOI / ID Number:	https://doi.org/10.1111/jpc.13560
Copyright Information:	Copyright 2017 Paediatrics and Child Health Division (The Royal Australasian College of Physicians)
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