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

被引:0
|
作者
Inusa, Baba Psalm Duniya [1 ]
Stewart, Claire Elizabeth [2 ]
Mathurin-Charles, Shamarah [3 ]
Porter, Jerlym [4 ]
Hsu, Lewis Li-yen [5 ]
Atoyebi, Wale [6 ]
De Montalembert, Mariane [7 ,8 ]
Diaku-Akinwumi, Ijeoma [9 ]
Akinola, Norah O. [10 ]
Andemariam, Biree [11 ]
Abboud, Miguel Raul [12 ]
Treadwell, Marsha [13 ]
机构
[1] Guys & St Thomas NHS Fdn Trust, Evelina London Childrens Hosp, Dept Paediat Haematol, London SE1 7EH, England
[2] Imperial Coll Healthcare NHS Trust, Dept Paediat, London, England
[3] Kings Coll London, Sch Med Educ, London, England
[4] St Jude Childrens Res Hosp, 332 N Lauderdale St, Memphis, TN 38105 USA
[5] Univ Illinois, Comprehens Sickle Cell Ctr, Chicago, IL USA
[6] Churchill Hosp, Canc & Haematol Ctr, Oxford, England
[7] Univ Paris 05, Reference Ctr Sickle Cell Dis, Hop Necker Enfants Malad, AP HP, Paris, France
[8] Labex GR Ex, Paris, France
[9] Lagos State Univ, Dept Paediat & Child Hlth, Ikeja, Nigeria
[10] Obafemi Awolowo Univ, Dept Haematol & Immunol, Ife, Nigeria
[11] Univ Connecticut Hlth, Neag Comprehens Canc Ctr, New England Sickle Cell Inst, Farmington, CT USA
[12] Amer Univ Beirut, Dept Pediat Hematol Oncol, Beirut, Lebanon
[13] Univ Calif San Francisco, Benioff Childrens Hosp Oakland, Oakland, CA USA
来源
LANCET HAEMATOLOGY | 2020年 / 7卷 / 04期
关键词
SELF-EFFICACY INSTRUMENT; YOUNG-ADULTS; ADOLESCENTS; READINESS; CHILDREN; MODEL; IDENTIFICATION; MORTALITY; SERVICES; SURVIVAL;
D O I
暂无
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
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.
引用
收藏
页码:E329 / E341
页数:13
相关论文
共 50 条
  • [1] Transition from paediatric to adult care for patients with sickle cell disease
    de Montalembert, Mariane
    Guitton, Corinne
    BRITISH JOURNAL OF HAEMATOLOGY, 2014, 164 (05) : 630 - 635
  • [2] A program of transition to adult care for sickle cell disease
    Saulsberry, Anjelica C.
    Porter, Jerlym S.
    Hankins, Jane S.
    HEMATOLOGY-AMERICAN SOCIETY OF HEMATOLOGY EDUCATION PROGRAM, 2019, : 496 - 504
  • [3] Development of quality indicators for transition from pediatric to adult care in sickle cell disease: A modified Delphi survey of adult providers
    Sobota, Amy E.
    Shah, Nishita
    Mack, Jennifer W.
    PEDIATRIC BLOOD & CANCER, 2017, 64 (06)
  • [4] Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease
    Porter, Jerlym S.
    Wesley, Kimberly M.
    Zhao, Mimi S.
    Rupff, Rebecca J.
    Hankins, Jane S.
    JOURNAL OF PEDIATRIC PSYCHOLOGY, 2017, 42 (09) : 1016 - 1027
  • [5] Transition to adult care in sickle cell disease: A longitudinal study of clinical characteristics and disease severity
    Kayle, Mariam
    Docherty, Sharron L.
    Sloane, Richard
    Tanabe, Paula
    Maslow, Gary
    Pan, Wei
    Shah, Nirmish
    PEDIATRIC BLOOD & CANCER, 2019, 66 (01)
  • [6] APHON/ASPHO Policy Statement for the Transition of Patients With Sickle Cell Disease From Pediatric to Adult Health Care
    Bryant, Rosalind
    Porter, Jerlym S.
    Sobota, Amy
    JOURNAL OF PEDIATRIC ONCOLOGY NURSING, 2015, 32 (06) : 355 - 359
  • [7] Transition From Pediatric to Adult Care in Sickle Cell Disease: Perspectives on the Family Role
    Porter, Jerlym S.
    Graff, J. Carolyn
    Lopez, Alana D.
    Hankins, Jane S.
    JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES, 2014, 29 (02): : 158 - 167
  • [8] Transition of patients with mucopolysaccharidosis from paediatric to adult care
    Lampe, C.
    McNelly, B.
    Gevorkian, A. K.
    Hendriksz, C. J.
    Lobzhanidze, T., V
    Perez-Lopez, J.
    Stepien, K. M.
    Vashakmadze, N. D.
    Del Toro, M.
    MOLECULAR GENETICS AND METABOLISM REPORTS, 2019, 21
  • [9] A Biopsychosocial Model for the Management of Patients With Sickle-Cell Disease Transitioning to Adult Medical Care
    Crosby, Lori E.
    Quinn, Charles T.
    Kalinyak, Karen A.
    ADVANCES IN THERAPY, 2015, 32 (04) : 293 - 305
  • [10] Beyond the transition of adolescents and young adults with sickle cell disease to adult care: Role of geography
    Anderson, Nina
    Eckman, James R.
    Ballas, Samir K.
    AMERICAN JOURNAL OF HEMATOLOGY, 2017, 92 (06) : E110 - E112