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Access and Models of Care

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Cancer in Adolescents and Young Adults

Part of the book series: Pediatric Oncology ((PEDIATRICO))

Abstract

In the last ten years, the scientific community has started to pay increasing attention to the adolescent and young (AYA) adult age group. All over the world, dedicated programs have been founded and implemented at single institutions or as national programs, variously involving healthcare providers, national societies, governments and charitable institutions. A major issue to address regards the model of care to be used, as the traditional pediatric and adult health care systems have shown to be inadequate to deal with these patients’ peculiarities. This chapter discusses the possible models of care and whether a single new model should exist for AYA as well as it could feasibly be implemented; the key themes for an ideal AYA model; the various models of AYA cancer care which have been implemented internationally, with similarities or differences reflecting variations in local medical culture and resources. In addition, this chapter aims to address the way in which various barriers and enablers interact with each component of the definition of access to care, i.e. timeliness, utilization, and structure of health services, to influence outcomes for this patient group.

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Authors and Affiliations

  1. Pediatric Oncology Unit, Fondazione IRCCS Istituto Nazionale Tumori, via Giacomo Venezian, 1, Milano, 20133, Italy

    Andrea Ferrari

  2. Adolescent and Young Adult Oncology, Cook Children’s Medical Center, Fort Worth, TX, 76104, USA

    Karen Albritton

  3. Youth Cancer Service SA/NT, Royal Adelaide Hospital, Adelaide, SA, Australia

    Michael Osborn MBBS

  4. Women’s and Children’s Hospital, Adelaide, SA, Australia

    Michael Osborn MBBS

  5. Departments of Pediatrics, Pathology and Medicine, McMaster University, Hamilton, ON, Canada

    Ronald Barr

  6. Division of Pediatric Hematology/Oncology Department of Pediatrics, Adolescent and Young Adult Oncology Program, Mary Bridge Hospital/MultiCare Health System, Tacoma, WA, USA

    Rebecca H. Johnson MD

  7. The Leeds Institute of Cancer and Pathology, Leeds Institute of Oncology and St James’s University Hospital, Leeds, UK

    Dan Stark

  8. The London Sarcoma Service, University College Hospital, London, UK

    Jeremy Whelan (Professor of Cancer Medicine and Consultant Medical Oncologist)

Authors
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  4. Ronald Barr
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  5. Rebecca H. Johnson MD
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  7. Jeremy Whelan
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Correspondence to Andrea Ferrari .

Editor information

Editors and Affiliations

  1. Bend, Oregon, USA

    Archie Bleyer

  2. McMaster University, Hamilton, Ontario, Canada

    Ronald Barr

  3. RiesSearch LLC, Rockville, Maryland, USA

    Lynn Ries

  4. University College Hospital, London, United Kingdom

    Jeremy Whelan

  5. Pediatric Oncology Unit, National Tumor Institute, Milano, Italy

    Andrea Ferrari

Appendix

Appendix

Program/organization

Brief description

Website address

LIVESTRONG

LIVESTRONG Young Adult Alliance is the successor to the US Lance Armstrong Foundation. It coordinates the advocacy and support programs of approximately 150 organizations

www.livestrong.org

PRG – Progress Review Group

The Adolescent and Young Adult Oncology (AYAO) Progress Review Group (PRG) is a US public–private initiative established in 2005 by the National Cancer Institute (NCI), in collaboration with the Lance Armstrong Foundation and the LIVESTRONG Young Adult Alliance. It is composed of prominent members of the scientific, medical, and advocacy communities, and its purpose is to develop a national agenda for adolescent/young adult oncology

planning.cancer.gov/disease/AYAO_Report_2006_FINAL.pdf

HOPE – Health Outcomes and Patient Experience

The HOPE study is a joint undertaking of the US National Cancer Institute and the former Lance Armstrong Foundation. It is an observational cohort study based on a survey of population-based cancer registries on newly diagnosed AYA patients with cancer

outcomes.cancer.gov/surveys/aya/overview.html

Critical Mass

Formerly LIVESTRONG’s Young Adult Alliance, it is the “Young Adult Cancer Alliance,” an independent not-for-profit organization working to advance the AYA movement in the United States

www.criticalmass.org

Focus Under 40

A program of educational courses from the American Society of Clinical Oncology to increase awareness and enhance the understanding of care issues and challenges associated with this patient population

university.asco.org/focus-under-forty.html

Stupid Cancer

US nonprofit organization that addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health, and social media

http://stupidcancer.org/

Change It Back

US independent not-for-profit organization. It focuses on advocacy and education

http://hcri.org/programs/change-it-back

TCT – Teenage Cancer Trust

A UK charity advocating for young people and supporting development of dedicated care units in National Health Service hospitals

www.teenagecancertrust.org

BRIGHTLIGHT

A UK research program evaluating the value of specialist care for young people with cancer

www.brightlightstudy.com

Teenagers and Young Adults with Cancer TYAC

A UK multidisciplinary professional group undertaking networking, education, and policy work

www.tyac.org.uk

NICE – National Institute of Healthcare Policy and Excellence

Organization supporting provision of evidence-based healthcare in the UK National Health Service

www.nice.org.uk

Teenage and Young Adult Clinical Studies Group

Coordinates’ national research portfolio in United Kingdom as part of National Cancer Research Institute

http://csg.ncri.org.uk/groups/clinical-studies-groups/

CPAC – Canadian Partnership Against Cancer, AYA Task Force

AYA Task Force of the CPAC, an independent organization funded by the federal government to accelerate action on cancer control for all Canadians

www.partnershipagainstcancer.ca

ONTrac

AYA program at the Peter MacCallum Cancer Centre in Melbourne, Australia

www1.petermac.org/ontrac

CanTeen

Australian national support organization for young people living with cancer, including patients, their siblings, young people with a parent with cancer, and those who have had a sibling or parent die of cancer

www.canteen.org.au

YCS – Youth Cancer Service

Australian hospital-based treatment and support services for 15–25-year-olds with cancer, funded by the Australian Government and administered by CanTeen. There are five lead services in Sydney, Adelaide, Brisbane, Melbourne, and Perth, and their work is complemented by national research, data, and professional development initiatives

www.youthcancer.com.au

SIAMO project – Società Italiana Adolescenti Malati Onco-ematologici

Italian Society for Adolescents with Oncohematological Diseases. Italian national program dedicated to adolescents with cancer, launched in 2014 by the cooperation of the pediatric oncology group with the adult medical oncology societies

www.progettosiamo.it

Go-AJA – Groupe Onco-hematologie

GO-AJA Groupe Onco-hematologie Adolescents et Jeunes Adultes (Groups of onco-hematology for adolescent and young adults)

www.goaja.fr

Adolescents et Jeunes Adultes

French national project dedicated to adolescents and young adults with cancer

AAA – Asociación Española de Adolescentes y Adultos Jóvenes con Cáncer

Spanish Association of Adolescents and Young Adults with Cancer. Started in 2012 as a platform to connect patients, health professionals, charity foundations, and other associations, to improve the care of adolescents and young adults with cancer in Spain

www.aaacancer.org

ENTYAC – European Network for Teenagers and Young Adults with Cancer

Pan-European multilevel network of professionals, patients, and caregivers, established as a result of the European Network for Cancer in Children and Adolescents (ENCCA) WP17 project, with the goal of promoting and coordinating international research in this field

 

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Ferrari, A. et al. (2017). Access and Models of Care. In: Bleyer, A., Barr, R., Ries, L., Whelan, J., Ferrari, A. (eds) Cancer in Adolescents and Young Adults. Pediatric Oncology. Springer, Cham. https://doi.org/10.1007/978-3-319-33679-4_20

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