Literature DB >> 32220342

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

Baba Psalm Duniya Inusa1, Claire Elizabeth Stewart2, Shamarah Mathurin-Charles3, Jerlym Porter4, Lewis Li-Yen Hsu5, Wale Atoyebi6, Mariane De Montalembert7, Ijeoma Diaku-Akinwumi8, Norah O Akinola9, Biree Andemariam10, Miguel Raul Abboud11, Marsha Treadwell12.   

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.
Copyright © 2020 Elsevier Ltd. All rights reserved.

Entities:  

Year:  2020        PMID: 32220342     DOI: 10.1016/S2352-3026(20)30036-3

Source DB:  PubMed          Journal:  Lancet Haematol        ISSN: 2352-3026            Impact factor:   18.959


  7 in total

1.  Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multilevel Perspective on Barriers, Facilitators, and Future Directions.

Authors:  Cecelia Calhoun; Lingzi Luo; Ana A Baumann; Anna Bauer; Evelyn Shen; Virginia McKay; Cole Hooley; Aimee James; Allison A King
Journal:  J Pediatr Hematol Oncol       Date:  2021-09-22       Impact factor: 1.170

Review 2.  Chronic pediatric diseases and risk for reading difficulties: a narrative review with recommendations.

Authors:  Donna Perazzo; Ryan Moore; Nadine A Kasparian; Megan Rodts; Tzipi Horowitz-Kraus; Lori Crosby; Brian Turpin; Andrew F Beck; John Hutton
Journal:  Pediatr Res       Date:  2022-02-04       Impact factor: 3.953

Review 3.  A scoping review of transition interventions for young adults with sickle cell disease.

Authors:  Adrienne Viola; Jerlym Porter; Jelaina Shipman; Ellen Brooks; Cecilia Valrie
Journal:  Pediatr Blood Cancer       Date:  2021-06-05       Impact factor: 3.167

4.  Population Pharmacokinetic Analysis of Rivipansel in Healthy Subjects and Subjects with Sickle Cell Disease.

Authors:  Satyaprakash Nayak; Brinda Tammara; Lutz O Harnisch
Journal:  Drugs R D       Date:  2021-05-16

5.  Health Care Transition From Pediatric- to Adult-Focused Care in X-linked Hypophosphatemia: Expert Consensus.

Authors:  Kathryn Dahir; Ruban Dhaliwal; Jill Simmons; Erik A Imel; Gary S Gottesman; John D Mahan; Gnanagurudasan Prakasam; Allison I Hoch; Prameela Ramesan; Maria Díaz-González de Ferris
Journal:  J Clin Endocrinol Metab       Date:  2022-02-17       Impact factor: 5.958

6.  Transition in Sickle Cell Disease (SCD): A German Consensus Recommendation.

Authors:  Ferras Alashkar; Carmen Aramayo-Singelmann; Janine Böll; Annette Hoferer; Andrea Jarisch; Haytham Kamal; Lena Oevermann; Michaela Schwarz; Holger Cario
Journal:  J Pers Med       Date:  2022-07-17

7.  Understanding the impact of long-chain fatty acid oxidation disorders for patients and caregivers.

Authors:  Eliza Kruger; Kristin Voorhees; Nina Thomas; Miller Judge; John Galla; Jeffrey Kung; Diego Rodriguez
Journal:  Mol Genet Metab Rep       Date:  2022-08-10
  7 in total

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