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• W2328108820 abstract "Summary We conducted a retrospective study on newborns with sickle‐cell disease ( SCD ), born 1995–2009, followed in a multicentre hospital‐based network. We assessed patient outcomes, medical care and compliance with the national guidelines published in December 2005. Data from 1033 patients (742 SS /Sβ°‐thalassaemia) with 6776 patient‐years of follow‐up were analysed (mean age 7·1 ± 3·9 years). SCD ‐related deaths ( n = 13) occurred only in SS ‐genotype patients at a median age of 23·1 months, mainly due to acute anaemia ( n = 5, including 2 acute splenic sequestrations) and infection ( n = 3). Treatment non‐compliance was associated with a 10‐fold higher risk of SCD ‐related death ( P = 0·01). Therapeutic intensification was provided for all stroke patients ( n = 12), almost all patients with abnormal transcranial Doppler (TCD) ( n = 76) or with >1 acute chest syndrome/lifetime ( n = 64) and/or ≥3 severe vaso‐occlusive crises/year ( n = 100). Only 2/3 of patients with baseline haemoglobin <70 g/l received intensification, mainly for other severity criteria. Overall, hydroxycarbamide was under‐prescribed, given to 2/3 of severe vaso‐occlusive patients and 1/3 of severely anaemic patients. Nevertheless, introduction of the on‐line guidelines was concomitant with an improvement in medical care in the 2006–2009 cohort with a trend towards increased survival at 5 years, from 98·3% to 99·2%, significantly increased TCD coverage ( P = 0·004) and earlier initiation of intensification of therapy ( P ≤ 0·01)." @default.
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• W2328108820 date "2016-04-07" @default.
• W2328108820 modified "2023-10-17" @default.
• W2328108820 title "Improvement of medical care in a cohort of newborns with sickle-cell disease in North Paris: impact of national guidelines" @default.
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• W2328108820 doi "https://doi.org/10.1111/bjh.14015" @default.
• W2328108820 hasPubMedId "https://pubmed.ncbi.nlm.nih.gov/27062606" @default.
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