Haematopoietic stem cell transplantation for severe combined immunodeficiency: Long-term health outcomes and patient perspectives

Journal of Paediatrics and Child Health
Adrian Ys LeeJohn B Ziegler

Abstract

To examine the long-term follow-up and health outcomes of patients who have undergone haematopoietic stem cell transplant (HSCT) for severe combined immunodeficiency (SCID). Through a structured questionnaire, we examined follow-up arrangements and long-term health outcomes in 22 children who have had a successful HSCT for SCID during the period of 1984-2012 at the Sydney Children's Hospital, Sydney, Australia. Most children considered themselves healthy and 'cured' from SCID. Whilst many children enjoy relatively good bio-social health outcomes, specific negative health outcomes and absenteeism from school were perceived negatively. Two-thirds of children see their general practitioner or specialist regularly; however, there did not appear to be consistency with the nature of this follow-up. The findings from our study highlight the complex bio-psychosocial health needs of post-HSCT SCID children and encourage SCID centres to consider a multidisciplinary approach to their follow-up. Further studies into the determinants of patients' perceptions of their health are needed.

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Citations

Mar 22, 2018·Cognitive and Behavioral Neurology : Official Journal of the Society for Behavioral and Cognitive Neurology·Andrea M ByrneRobyn Westmacott

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