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Mapping Adolescent Cancer Services

How Do Young People, Their Families, and Staff Describe Specialized Cancer Care in England?

Vindrola-Padros, Cecilia PhD; Taylor, Rachel M. PhD; Lea, Sarah MSc; Hooker, Louise MSc; Pearce, Susie MSc; Whelan, Jeremy MD; Gibson, Faith PhD

doi: 10.1097/NCC.0000000000000315

Background: Specialized cancer services for adolescents and young adults (AYAs) are being developed in a number of countries to address the particular needs of this population. However, the evidence base to inform service design and associated care delivery is inadequate.

Objective: The aim of this study was to undertake a mapping study to identify the main components of AYA cancer care to be studied further to reflect the range of approaches to service delivery currently provided in England.

Methods: Semistructured interviews were conducted with young people, their family members, and staff in 11 AYA principal treatment centers. Using different levels of extraction, these data were drawn together to illuminate the main components of AYA cancer care and the range of approaches to service delivery.

Results: Young people, family members, and staff consistently identified and valued similar areas of AYA cancer care: caring and supportive staff, activities designed for AYAs, and an environment that feels like home.

Conclusion: The mapping exercise successfully informed the selection of 4 sites for an in-depth case study. The main components of specialized AYA care have been described.

Implications for Practice: This description can assist clinical teams interested in developing or refining their approach to AYA cancer care. It could also offer a way to agree priorities, based on the key components young people consider as being essential for their care, and facilitate services to benchmark against these key components, and it could also go some way to address international AYA goals to support global change to reduce the current disparities in care.

Author Affiliations: Department of Applied Health Research, University College London (Dr Vindrola-Padros); Cancer Clinical Trials Unit (Dr Taylor and Ms Pearce) and The London Sarcoma Service (Dr Whelan), University College London Hospital NHS Foundation Trust; and Department of Children’s Nursing, London South Bank University (Drs Gibson and Taylor and Ms Lea), London; Teenage and Young Adult Cancer Service, University Hospital Southampton NHS Foundation Trust, Southampton (Ms Hooker); and Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust, London (Dr Gibson), United Kingdom.

The authors have no funding or conflicts of interest to disclose.

Correspondence: Faith Gibson, PhD, School of Health & Social Care, London South Bank University, 103 Borough Rd, London SE1 0AA, United Kingdom (

Accepted for publication August 31, 2015.

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