The Creation of a Comprehensive Adolescent and Young Adult Cancer Survivorship Program: “Lost in Transition” No More

Linendoll, Nadine; Murphy-Banks, Rachel; Barthel, Erin Marie; Bartucca, Lisa; Boehm, Lauren; Welch, Madison; Weidner, Ruth Ann; Parsons, Susan K.

doi:10.1089/jayao.2020.0024

Cited by 10 publications

(8 citation statements)

References 34 publications

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“…Fortunately, this gap in unmet care needs and poor outcomes of AYAs has been recognized, which led to the development of a new medical discipline called ‘AYA oncology’ [ 26 ] and the start of dedicated AYA care programs in some countries [ 12 , 25 , 73 , 120 , 121 , 122 , 123 , 124 , 125 ]. Overall, several essential components of AYA care programs are described in the literature, including (1) patient focus, (2) multidisciplinary approach, (3) cooperating pediatric and adult expertise, (4) staff education and training, (5) dedicated AYA space, (6) patient and family advocacy, and (7) research and clinical trial availability [ 12 , 25 , 123 , 126 , 127 , 128 , 129 ]. Although countries handle different age ranges for their AYA programs (varying from 15–25 years in Australia to 15–39 years in the United States and 18–39 years in the Netherlands), which may have consequences for the type of care provided, the patient focus remains an essential part in AYA care [ 12 , 123 ].…”

Section: Challenges and Models Of Aya Survivorship Carementioning

confidence: 99%

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

Janssen

Graaf

Meer

et al. 2021

Cancers

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Worldwide, more than 1.2 million adolescents and young adults (AYAs; those aged 15–39 years) are diagnosed with cancer each year. Although considerable variability exists according to cancer site and stage of disease, the 5-year relative survival at the time of diagnosis has been estimated at >80% for all AYA patients with cancer combined. Extensive survivorship research in recent decades has focused on patients diagnosed with cancer as children (<15 years) and older adults (>39 years), yet few studies to date have reported outcomes specifically for patients diagnosed as AYAs. With increasing incidence and improving survival for many tumor types, leading to the majority of AYA patients with cancer becoming long-term survivors, there is a critical need for research efforts to inform the survivorship care of this growing population. This article describes the population of AYA cancer survivors according to their epidemiology and late and long-term effects, the challenges and models of AYA survivorship care, as well as future opportunities for research and healthcare.

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Section: Challenges and Models Of Aya Survivorship Carementioning

confidence: 99%

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

Janssen

Graaf

Meer

et al. 2021

Cancers

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“…In consultation with experienced librarians of the authors’ university, comprehensive literature searches will be conducted in PubMed, Web of Science, EMBASE, PsycINFO, CINAHL, Ovid and Cochrane Library using keywords and database-specific controlled vocabulary terms where available, covering the years January 2005 to May 2023. This starting date coincides with the publication of the seminal Institute of Medicine report in 2005 called ‘From Cancer Patient to Cancer Survivor: Lost in Transition’, which first highlighted cancer survivors and the concept of transition 5 43. And after then, scholars begin research related to healthcare transitions for cancer survivors.…”

Section: Methodsmentioning

confidence: 69%

Developing a theory-driven framework for a web-based intervention to improve transition in childhood cancer survivors: a protocol of realist synthesis

Ma,

Li,

Huang

et al. 2023

BMJ Open

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Backgrounds and purposeChildhood cancer survivors (CCSs) who transition through adolescence and enter young adulthood may suffer psychological, cognitive, social, fertility, and sexual issues and concerns. There is an urgent need for comprehensive intervention strategies to improve the transition of CCSs. Web-based technologies are gaining momentum as a new mechanism to provide healthcare and education for adolescents. However, previous frameworks have been limited in their effectiveness in explaining web-based interventions.This realist synthesis aims to synthesise current evidence on transition of CCSs to develop a framework for web-based interventions. The framework can foster understanding of the integrity of web-based intervention implementation chain, examine which mechanistic factors will be triggered by web-based interventions, note and examine the flows, blockages and points of contention in the implementation, to refine web-based interventions.Method and analysisA realist synthesis that adheres to the Realist and Meta-narrative Evidence Syntheses-Evolving Standard will be used. Studies will be identified through PubMed, Web of Science, EMBASE, PsycINFO, CINAHL, Ovid and Cochrane Library from the period of January 2005 to May 2023. We will also search the reference lists provided in relevant studies and reviews. Articles will be screened based on two principles: (1) Relevance: does the research address the initial programme theory? (2) Rigour: whether a particular inference drawn by the original researcher has sufficient weight to make a methodologically credible contribution to the test of the initial programme theory. No restrictions regarding the design or language of publication will be considered.Ethics and disseminationAs a review, ethical approval is not required. The results from this study will be presented at international conferences and disseminated through peer-reviewed publications. Patients and the public will be involved in the dissemination plans.

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“…Notably, much of the literature on transition in AYA survivors, and associated barriers, has emerged from studies of childhood and adolescent cancer survivors entering adulthood. 35,63,66,[82][83][84][85][86][87][88][89][90] Beyond single-center, disease-specific reports, 91,92 and the documented discomfort of adult PCPs in following long-term survivors, [93][94][95] there are very limited data available on transition of young adult survivors who move directly from acute oncologic care to longitudinal care by the primary care provider. Additional work is needed to elucidate successful approaches to transition, as well as unique barriers that need to be overcome, in this population.…”

Section: Barriers To Transition In Aya Cancer Survivorsmentioning

confidence: 99%

Health Care Transitions Among Adolescents and Young Adults With Cancer

Ehrhardt,

Friedman,

Hudson

2024

JCO

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Survivors of adolescent and young adult (AYA) cancers, defined as individuals diagnosed with a primary malignancy between age 15 and 39 years, are a growing population with unique developmental, psychosocial, and health-related needs. These individuals are at excess risk of developing a wide range of chronic comorbidities compared with the general population and, therefore, require lifelong, risk-based, survivorship care to optimize long-term health outcomes. The health care needs of survivors of AYA cancers are particularly complicated given the often heterogeneous and sometimes fragmented care they receive throughout the cancer care continuum. For example, AYA survivors are often treated in disparate settings (pediatric v adult) on dissimilar protocols that include different recommendations for longitudinal follow-up. Specialized tools and techniques are needed to ensure that AYA survivors move seamlessly from acute cancer care to survivorship care and, in many cases, from pediatric to adult clinics while still remaining engaged in long-term follow-up. Systematic, age-appropriate transitional practices involving well-established clinical models of care, survivorship care plans, and survivorship guidelines are needed to facilitate effective transitions between providers. Future studies are necessary to enhance and optimize the clinical effectiveness of transition processes in AYA cancer survivors.

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The Creation of a Comprehensive Adolescent and Young Adult Cancer Survivorship Program: “Lost in Transition” No More

Cited by 10 publications

References 34 publications

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

Adolescent and Young Adult (AYA) Cancer Survivorship Practices: An Overview

Developing a theory-driven framework for a web-based intervention to improve transition in childhood cancer survivors: a protocol of realist synthesis

Health Care Transitions Among Adolescents and Young Adults With Cancer

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