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• W3172197179 abstract "Infants with SCID are treated with hematopoietic cell transplantation (HCT) or gene therapy (GT). Caregiver perceptions of pre-treatment counseling and understanding of durability of HCT/GT are poorly understood.A survey was designed and distributed to families of patients with SCID. Topics in the questionnaire included SCID genotype and treatment, family recollections of pre-treatment counseling and present clinical status.151 surveys were analyzed. 132 were treated with HCT, 19 with GT. From counseling received, 37% expected HCT/GT would lead to cure; 43% expected HCT/GT would last a lifetime. Of 136 living patients, 59% reported overall good health but 65% reported some persistent health challenges.For some, interpretation of the word cure varied, leading to misunderstanding regarding need for continued medical evaluations and additional therapies. Clear communication regarding the importance of lifelong follow-up, no matter the treatment outcome, will help to optimize good health and quality of life." @default.
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• W3172197179 date "2021-08-01" @default.
• W3172197179 modified "2023-10-17" @default.
• W3172197179 title "Expectations and experience: Parent and patient perspectives regarding treatment for Severe Combined Immunodeficiency (SCID)" @default.
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• W3172197179 doi "https://doi.org/10.1016/j.clim.2021.108778" @default.
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