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

Baba Psalm Duniya Inusa*, Claire Elizabeth Stewart, Shamarah Mathurin-Charles, Jerlym Porter, Lewis Li yen Hsu, Wale Atoyebi, Mariane De Montalembert, Ijeoma Diaku-Akinwumi, Norah O. Akinola, Biree Andemariam, Miguel Raul Abboud, Marsha Treadwell

*Corresponding author for this work

    Research output: Contribution to journalReview articlepeer-review

    27 Citations (Scopus)

    Abstract

    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.

    Original languageEnglish
    Pages (from-to)e329-e341
    JournalThe Lancet Haematology
    Volume7
    Issue number4
    DOIs
    Publication statusPublished - Apr 2020

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