A participatory study of teenagers and young adults views on access and participation in cancer research

Taylor, Rachel; Solanki, Anita; Aslam, Natasha; Whelan, Jeremy; Fern, Lorna A

doi:10.1016/j.ejon.2015.07.007

Cited by 32 publications

(72 citation statements)

References 19 publications

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“…The host (the AYA) is also clearly different in many ways from children and older adults, including pharmacokinetics, toxicity profiles, dose tolerance, and fertility considerations. The need for translational research is greater and more challenging in AYAs than in any other age group . Increased availability of treatment trials with laboratory correlates and accrual to them are essential to improving the outcome of cancer in AYAs.…”

Section: Discussionmentioning

confidence: 99%

Role of clinical trials in survival progress of American adolescents and young adults with cancer—and lack thereof

Bleyer

Tai²,

Siegel

2018

Pediatric Blood & Cancer

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In the United States, adolescent and young adult (AYA) patients with cancer have the lowest clinical trial participation rate of all age groups and slower progress in survival improvement than younger patients. Ominously, AYA clinical trial participation has been steadily decreasing since 2010, except in 15–19 year olds and AYAs with acute lymphoblastic leukemia. In order to reverse the accrual trend, multiple changes are necessary, including convincing community oncologists to pursue clinical trials on behalf of their AYA patients and to have the new National Community Oncology Research Program and National Clinical Trials Network lead a coordinated effort to increase accrual.

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Section: Discussionmentioning

confidence: 99%

Role of clinical trials in survival progress of American adolescents and young adults with cancer—and lack thereof

Bleyer

Tai²,

Siegel

2018

Pediatric Blood & Cancer

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“…While emphasis may have been placed on the creation of the built environment and specialist staff by charities in the UK, there has also been development of multiprofessional AYA cancer teams driven by the additional discourses and values underpinning multidisciplinarity. Integral to this has been the influential role of nurses with leadership positions in AYA services, practice and research (Kelly & Gibson, ; Morgan & Soanes, ; Olsen & Smith, ; Smith et al., ; Taylor, Solanki, Aslam, Whelan, & Fern, ; Taylor, Feltbower et al., ). July 2014 marked the launch of the first nursing‐specific publication on practice competencies entitled Caring for Teenagers and Young Adults (TYAs) with Cancer: A Competence and Career Framework for Nursing (Teenage Cancer Trust, ).…”

Section: Power Professionals and Policy In Aya Cancer Carementioning

confidence: 99%

“…(); Taylor, Solanki et al. () have purposefully engaged AYAs with cancer in their recent national study evaluating specialist care models. One critique is that objectivity may be at risk in such approaches.…”

Section: Power Professionals and Policy In Aya Cancer Carementioning

confidence: 99%

An analysis of the development of adolescent and young adult cancer care in the United Kingdom: A Foucauldian perspective

Cable

Kelly

2018

Nursing Inquiry

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This paper analyses the development of the specialism of adolescent and young adult (AYA) cancer care via a Foucauldian lens to consider how knowledge and awareness have grown since questions were first raised about unmet needs of AYAs with cancer. The AYA specialism has gathered momentum over the last 30 years in the United Kingdom (UK) and is fast gathering pace internationally. Fundamental to this process has been the combined contribution from nursing and other health professionals, researchers, policy‐makers and philanthropists. From an initial process of problematisation, through a gradual growth in empirical knowledge and resultant shifts in health policy, a new nexus of expertise has emerged that enabled AYA cancer care to become recognised as distinct from either child or adult oncology. Different stakeholders contributed to the discourses that have underpinned this development—a process likely to continue as it expands further. This paper draws on examples from the growth of the AYA specialism, the emergence of new professional roles and a growth in research. It illustrates how the coalescing of multiple perspectives allowed new discourses and, ultimately, new practices to be established that now have global impact.

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“…There are several mediators of referral for AYA primary care providers, intermediary specialists, oncologists and patients themselves and AYA are more likely to be referred to community oncologists, with limited trial availability, rather than referring AYA to adult academic centres . However, referral to an academic centre with trial availability does not guarantee eligibility or approach for trial participation, and we are learning more about the role of healthcare professionals as gatekeepers in the recruitment process for this population . The paper by Hendricks‐Ferguson et al .…”

Section: Resultsmentioning

confidence: 99%

Enhancing accrual to clinical trials of adolescents and young adults with cancer

Fern

Taylor

2018

Pediatric Blood & Cancer

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Underrepresentation of young people in cancer research is an international phenomenon and may contribute to poorer outcomes. We sought to identify systematically tested interventions and strategies to improve recruitment. The review identified 13 papers. The following four themes emerged: trial availability/regulatory factors; service configuration/place-of-care factors; recruitment methods and developmental factors specific to young people. We could not identify any studies that had employed prospective interventions to improve recruitment. Without available research studies in which to garner data on adolescents and young adults, we will always be constrained in our ability to provide evidence based care with resultant limitations on our ability to improve outcomes.

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A participatory study of teenagers and young adults views on access and participation in cancer research

Abstract: Effective ways to support healthcare professionals approaching vulnerable populations about research are needed to ensure young people are empowered to make informed choices about research participation.

Cited by 32 publications

References 19 publications

Role of clinical trials in survival progress of American adolescents and young adults with cancer—and lack thereof

Role of clinical trials in survival progress of American adolescents and young adults with cancer—and lack thereof

An analysis of the development of adolescent and young adult cancer care in the United Kingdom: A Foucauldian perspective

Enhancing accrual to clinical trials of adolescents and young adults with cancer

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