Paediatric to adult transition care for patients with sickle cell disease: a global perspective.


Journal

The Lancet. Haematology
ISSN: 2352-3026
Titre abrégé: Lancet Haematol
Pays: England
ID NLM: 101643584

Informations de publication

Date de publication:
Apr 2020
Historique:
received: 10 11 2019
revised: 26 01 2020
accepted: 28 01 2020
entrez: 30 3 2020
pubmed: 30 3 2020
medline: 9 4 2020
Statut: ppublish

Résumé

Sickle cell disease is a life-threatening inherited condition designated as a public health priority by WHO. Increased longevity of patients with sickle cell disease in high-income, middle-income, and low-income countries present unprecedented challenges for all settings; however, a globally standardised solution for patient transition from paediatric to adult sickle cell disease health care is unlikely to address the challenges. We established a task force of experts from a multicountry (the USA, Europe, Middle East, and Africa) consortium. We combined themes from the literature with viewpoints from members of the task force and invited experts to provide a global overview of transition care practice, highlighting barriers to effective transition care and provide baseline recommendations that can be adapted to local needs. We highlighted priorities to consider for any young person with sickle cell disease transitioning from paediatric to adult health care: skills transfer, increasing self-efficacy, coordination, knowledge transfer, linking to adult services, and evaluating readiness (the SICKLE recommendations). These recommendations aim to ensure appropriate benchmarking of transition programming, but multisite prospective studies are needed to address this growing public health need.

Identifiants

pubmed: 32220342
pii: S2352-3026(20)30036-3
doi: 10.1016/S2352-3026(20)30036-3
pii:
doi:

Types de publication

Journal Article Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

e329-e341

Informations de copyright

Copyright © 2020 Elsevier Ltd. All rights reserved.

Auteurs

Baba Psalm Duniya Inusa (BPD)

Department of Paediatric Haematology, Evelina London Children's Hospital, Guy's and St Thomas NHS Foundation Trust, London, UK. Electronic address: baba.inusa@gstt.nhs.uk.

Claire Elizabeth Stewart (CE)

Department of Paediatrics, Imperial College Healthcare NHS Trust, London, UK.

Shamarah Mathurin-Charles (S)

School of Medical Education, King's College London, London, UK.

Jerlym Porter (J)

St Jude Children's Research Hospital, Memphis, TN, USA.

Lewis Li-Yen Hsu (LL)

Comprehensive Sickle Cell Center, University of Illinois at Chicago, Chicago, Illinois, USA.

Wale Atoyebi (W)

Cancer and Haematology Centre, Churchill Hospital, Oxford, UK.

Mariane De Montalembert (M)

Reference Center for Sickle Cell Disease, Hôpital Necker-Enfants malades, Assistance Publique - Hôpitaux de Paris, Université Paris Descartes, Paris France; Labex GR-Ex, Paris, France.

Ijeoma Diaku-Akinwumi (I)

Department of Paediatrics and Child Health, Lagos State University, Ikeja, Nigeria.

Norah O Akinola (NO)

Department of Haematology and Immunology, Obafemi Awolowo University, Ile-Ife, Nigeria.

Biree Andemariam (B)

New England Sickle Cell Institute, Neag Comprehensive Cancer Center, University of Connecticut Health, Farmington, CT, USA.

Miguel Raul Abboud (MR)

Department of Pediatric Hematology Oncology, American University Beirut, American University Beirut, Lebanon.

Marsha Treadwell (M)

University of California San Francisco Benioff Children's Hospital Oakland, Oakland, California, USA.

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