TY - JOUR
T1 - Paediatric to adult transition care for patients with sickle cell disease
T2 - a global perspective
AU - Inusa, Baba Psalm Duniya
AU - Stewart, Claire Elizabeth
AU - Mathurin-Charles, Shamarah
AU - Porter, Jerlym
AU - Hsu, Lewis Li yen
AU - Atoyebi, Wale
AU - De Montalembert, Mariane
AU - Diaku-Akinwumi, Ijeoma
AU - Akinola, Norah O.
AU - Andemariam, Biree
AU - Abboud, Miguel Raul
AU - Treadwell, Marsha
PY - 2020/4
Y1 - 2020/4
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85082041358&partnerID=8YFLogxK
U2 - 10.1016/S2352-3026(20)30036-3
DO - 10.1016/S2352-3026(20)30036-3
M3 - Review article
AN - SCOPUS:85082041358
SN - 2352-3026
VL - 7
SP - e329-e341
JO - The Lancet Haematology
JF - The Lancet Haematology
IS - 4
ER -