Lee, AYS and Frith, K and Schneider, L and Ziegler, JB, Haematopoietic stem cell transplantation for severe combined immunodeficiency: Long-term health outcomes and patient perspectives, Journal of Paediatrics and Child Health, 53, (8) pp. 766-770. ISSN 1034-4810 (2017) [Refereed Article]
Copyright 2017 Paediatrics and Child Health Division (The Royal Australasian College of Physicians)
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:||Refereed Article|
|Keywords:||haematopoietic stem cell transplant, immunology, outcomes, severe combined immunodeficiency|
|Research Division:||Medical and Health Sciences|
|Research Field:||Cellular Immunology|
|Objective Group:||Clinical Health (Organs, Diseases and Abnormal Conditions)|
|Objective Field:||Immune System and Allergy|
|UTAS Author:||Lee, AYS (Dr Adrian Lee)|
|Web of Science® Times Cited:||2|
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