Literature DB >> 20477855

'Listening to Patients': what is the value of age-appropriate care to teenagers and young adults with cancer?

S Marris1, S Morgan, D Stark.   

Abstract

Current healthcare policy increasingly recognises the importance of patient experience in determining care. The 2005 UK National Institute for Health and Clinical Excellence Improving Outcomes Guidance encompasses caring for young people with cancer in an age-appropriate model of care developing regional principal treatment centres for this purpose. When published this was based upon limited outcomes evidence, and only a small amount of teenage and young adult patient and parent opinion. We have systematically reviewed the literature between 1996 and 2008, examining how far the experiences of this patient group support or refute the current policy. The recent literature describes with increasing consistency that teenage and young adult cancer patients have specific care needs, and gain benefits from an age-appropriate environment of care, including peer group support, age-appropriate information, recreational and vocational support, and staff expert in both the cancer and care of their age group. Many patients are prepared to travel to receive such care, if services are not in place to deliver excellent shared care between principal treatment centres and services nearer home. Some of these needs are unmet in non-specialist units. There remains, however, a paucity of rigorous comparative studies quantifying the value of specialist cancer care for this patient group.
© 2010 Blackwell Publishing Ltd.

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Year:  2011        PMID: 20477855     DOI: 10.1111/j.1365-2354.2010.01186.x

Source DB:  PubMed          Journal:  Eur J Cancer Care (Engl)        ISSN: 0961-5423            Impact factor:   2.520


  10 in total

1.  Taking control over our health: Empowerment as perceived by young adults living with advanced cancer.

Authors:  Rosalind Garland; Saima Ahmed; Carmen G Loiselle
Journal:  Can Oncol Nurs J       Date:  2020-04-01

2.  Avoir sa santé en main : le sentiment d'habilitation tel que perçu par les jeunes adultes souffrant d'un cancer avancé.

Authors:  Rosalind Garland; Saima Ahmed; Carmen G Loiselle
Journal:  Can Oncol Nurs J       Date:  2020-04-01

3.  Geographical Factors Affecting the Admission of Teenagers and Young Adults to Age-Specialist Inpatient Cancer Care in England.

Authors:  Rebecca J Birch; Eva J A Morris; Dan P Stark; Sue Morgan; Ian J Lewis; Robert M West; Richard G Feltbower
Journal:  J Adolesc Young Adult Oncol       Date:  2014-03-01       Impact factor: 2.223

4.  Model of Care for Adolescents and Young Adults with Cancer: The Youth Project in Milan.

Authors:  Chiara Magni; Laura Veneroni; Matteo Silva; Michela Casanova; Stefano Chiaravalli; Maura Massimino; Carlo Alfredo Clerici; Andrea Ferrari
Journal:  Front Pediatr       Date:  2016-08-24       Impact factor: 3.418

5.  Cocreated Smartphone App to Improve the Quality of Life of Adolescents and Young Adults with Cancer (Kræftværket): Protocol for a Quantitative and Qualitative Evaluation.

Authors:  Abbey Elsbernd; Maiken Hjerming; Camilla Visler; Lisa Lyngsie Hjalgrim; Carsten Utoft Niemann; Kirsten Boisen; Helle Pappot
Journal:  JMIR Res Protoc       Date:  2018-05-10

6.  Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study.

Authors:  Sarah Lea; Rachel M Taylor; Ana Martins; Lorna A Fern; Jeremy S Whelan; Faith Gibson
Journal:  Adolesc Health Med Ther       Date:  2018-10-24

7.  Using Cocreation in the Process of Designing a Smartphone App for Adolescents and Young Adults With Cancer: Prototype Development Study.

Authors:  Abbey Elsbernd; Maiken Hjerming; Camilla Visler; Lisa Lyngsie Hjalgrim; Carsten Utoft Niemann; Kirsten Arntz Boisen; Jens Jakobsen; Helle Pappot
Journal:  JMIR Form Res       Date:  2018-11-01

8.  Challenges for children and adolescents with cancer in Europe: the SIOP-Europe agenda.

Authors:  Gilles Vassal; Edel Fitzgerald; Martin Schrappe; Frédéric Arnold; Jerzy Kowalczyk; David Walker; Lars Hjorth; Riccardo Riccardi; Anita Kienesberger; Kathy-Pritchard Jones; Maria Grazia Valsecchi; Dragana Janic; Henrik Hasle; Pamela Kearns; Giulia Petrarulo; Francesco Florindi; Samira Essiaf; Ruth Ladenstein
Journal:  Pediatr Blood Cancer       Date:  2014-04-07       Impact factor: 3.167

9.  Health-Related Quality of Life Before and After Use of a Smartphone App for Adolescents and Young Adults With Cancer: Pre-Post Interventional Study.

Authors:  Helle Pappot; Gry Assam Taarnhøj; Abbey Elsbernd; Maiken Hjerming; Signe Hanghøj; Marc Jensen; Kirsten Arntz Boisen
Journal:  JMIR Mhealth Uhealth       Date:  2019-10-03       Impact factor: 4.773

10.  Primary care in five European countries: A citizens' perspective on the quality of care for children.

Authors:  Janine A van Til; Catharina G M Groothuis-Oudshoorn; Eline Vlasblom; Paul L Kocken; Magda M Boere-Boonekamp
Journal:  PLoS One       Date:  2019-11-11       Impact factor: 3.240

  10 in total

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