Literature DB >> 28637291

Pediatric to Adult Care Transition: Perspectives of Young Adults With Sickle Cell Disease.

Jerlym S Porter1, Kimberly M Wesley1, Mimi S Zhao1, Rebecca J Rupff1, Jane S Hankins1.   

Abstract

Objectives: The aim of this study was to explore perspectives of transition and transition readiness of young adult patients (YAs) with sickle cell disease (SCD) who have transitioned to adult health care.
Methods: In all, 19 YAs with SCD (ages 18-30 years) participated in one of three focus groups and completed a brief questionnaire about transition topics. Transcripts were coded and emergent themes were examined using the social-ecological model of adolescent and young adult readiness for transition (SMART).
Results: Themes were consistent with most SMART components. Adult provider relationships and negative medical experiences emerged as salient factors. YAs ranked choosing an adult provider, seeking emergency care, understanding medications/medication adherence, knowing SCD complications, and being aware of the impact of health behaviors as the most important topics to include in transition programming. Conclusions: The unique perspectives of YAs can inform the development and evaluation of SCD transition programming by incorporating the identified themes.
© The Author 2017. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Entities:  

Keywords:  developmental perspectives; qualitative methods; sickle cell disease

Mesh:

Year:  2017        PMID: 28637291      PMCID: PMC6251560          DOI: 10.1093/jpepsy/jsx088

Source DB:  PubMed          Journal:  J Pediatr Psychol        ISSN: 0146-8693


  37 in total

1.  Growing up with sickle cell disease: a pilot study of a transition program for adolescents with sickle cell disease.

Authors:  Grant M Smith; Vivian R Lewis; Elaine Whitworth; Deborah T Gold; Courtney D Thornburg
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3.  A transition pilot program for adolescents with sickle cell disease.

Authors:  Jane S Hankins; Raymond Osarogiagbon; Patricia Adams-Graves; Laura McHugh; Vanessa Steele; Matthew P Smeltzer; Sheila M Anderson
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Review 4.  Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development.

Authors:  Lisa A Schwartz; Lauren C Daniel; Lauren D Brumley; Lamia P Barakat; Kimberly M Wesley; Lisa K Tuchman
Journal:  J Pediatr Psychol       Date:  2014-06-01

5.  Changes in hospitalization patterns among patients with congenital heart disease during the transition from adolescence to adulthood.

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Review 6.  Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition.

Authors:  Veronika Waldboth; Christine Patch; Romy Mahrer-Imhof; Alison Metcalfe
Journal:  Int J Nurs Stud       Date:  2016-07-12       Impact factor: 5.837

7.  Age-related treatment patterns in sickle cell disease patients and the associated sickle cell complications and healthcare costs.

Authors:  Morey A Blinder; Francis Vekeman; Medha Sasane; Alex Trahey; Carole Paley; Mei Sheng Duh
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8.  Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease.

Authors:  Carlton Haywood; Sophie Lanzkron; Shawn Bediako; John J Strouse; Jennifer Haythornthwaite; C Patrick Carroll; Marie Diener-West; Gladys Onojobi; Mary Catherine Beach
Journal:  J Gen Intern Med       Date:  2014-09-10       Impact factor: 5.128

9.  Does Attendance at a Sickle Cell Educational Conference Improve Clinician Knowledge and Attitude Toward Patients with Sickle Cell Disease?

Authors:  Coretta M Jenerette; Cheryl A Brewer; Susan Silva; Paula Tanabe
Journal:  Pain Manag Nurs       Date:  2016-06       Impact factor: 1.929

10.  Usability and Feasibility of an mHealth Intervention for Monitoring and Managing Pain Symptoms in Sickle Cell Disease: The Sickle Cell Disease Mobile Application to Record Symptoms via Technology (SMART).

Authors:  Charles R Jonassaint; Nirmish Shah; Jude Jonassaint; Laura De Castro
Journal:  Hemoglobin       Date:  2015-04-01       Impact factor: 0.849

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  7 in total

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Authors:  Katie A Devine; Maureen Monaghan; Lisa A Schwartz
Journal:  J Pediatr Psychol       Date:  2017-10-01

2.  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
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3.  Progression of central nervous system disease from pediatric to young adulthood in sickle cell anemia.

Authors:  Grace Champlin; Scott N Hwang; Andrew Heitzer; Juan Ding; Lisa Jacola; Jeremie H Estepp; Winfred Wang; Kenneth I Ataga; Curtis L Owens; Justin Newman; Allison A King; Robert Davis; Guolian Kang; Jane S Hankins
Journal:  Exp Biol Med (Maywood)       Date:  2021-08-18

4.  Youths' Experiences of Transition from Pediatric to Adult Care: An Updated Qualitative Metasynthesis.

Authors:  Maureen Varty; Barbara Speller-Brown; Leslie Phillips; Katherine Patterson Kelly
Journal:  J Pediatr Nurs       Date:  2020-09-20       Impact factor: 2.145

Review 5.  Transition to adulthood and adult health care for patients with sickle cell disease or cystic fibrosis: Current practices and research priorities.

Authors:  Sophie Lanzkron; Gregory S Sawicki; Kathryn L Hassell; Michael W Konstan; Robert I Liem; Susanna A McColley
Journal:  J Clin Transl Sci       Date:  2018-10

6.  Pediatric-Adult Care Transition: Perceptions of Adolescent and Young Adult Patients with Sickle Cell Disease and Their Healthcare Providers.

Authors:  Delphine Hoegy; Ronald Guilloux; Nathalie Bleyzac; Alexandra Gauthier-Vasserot; Giovanna Cannas; Yves Bertrand; Claude Dussart; Audrey Janoly-Dumenil
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7.  The sickle cell disease implementation consortium: Translating evidence-based guidelines into practice for sickle cell disease.

Authors:  Lisa D DiMartino; Ana A Baumann; Lewis L Hsu; Julie Kanter; Victor R Gordeuk; Jeffrey Glassberg; Marsha J Treadwell; Cathy L Melvin; Joseph Telfair; Lisa M Klesges; Allison King; Ted Wun; Nirmish Shah; Robert W Gibson; Jane S Hankins
Journal:  Am J Hematol       Date:  2018-10-17       Impact factor: 13.265

  7 in total

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