Special Issue "AYA Cancer Care and Support: Patient Perspectives, Programs, Practices, and Policy Change"
Deadline for manuscript submissions: 30 December 2023 | Viewed by 418
2. Long Term Survivor’s Clinic, Alberta Children’s Hospital, Calgary, AB T3B 6A8, Canada
Interests: psychosocial outcomes of pediatric and AYA cancer patients; quality of life; survivorship
Globally, there are more than 1,000,000 new diagnoses of cancer annually amongst adolescents and young adults (AYAs), aged 15–39, and this number continues to rise . Historically, specialized care and support for AYAs has been overlooked, underserved, and underfunded [2,3], yet AYAs have highly specific medical and psychosocial needs that require life-stage-appropriate care and support [4,5].
Fortunately, over the last two decades, AYA-focused research, care, and support have garnered support and momentum globally [6,7]. For example, in the United Kingdom and Australia the provision of AYA-specific cancer care is standard practice, there is growing recognition that AYA programming should be delivered by experts with experience working with AYAs, and many community-based initiatives are offering AYA-specific care and support.
Simultaneously, there is increasing recognition that engaging AYAs as experts of their own lived experiences with cancer and as partners in research, programming and practice can improve quality, knowledge translation efforts, and patient-reported outcome measures [8–11]. Today, terms like patient-oriented research and patient-centered care are more mainstream.
Yet, amidst this growing momentum, many efforts in AYA cancer care, support, research, and patient engagement often disproportionately represent white, heterosexual, middle-income, and highly educated populations . There is need for greater representation of AYAs with diverse, intersecting identities in research, programming, and practice, and for recognition of their changing and complex needs [12,13].
In this Special Issue we aim to showcase research, community-based programs, partnerships, and policy and practice change initiatives that meaningfully engaged patients to understand their unique needs and strengthen AYA cancer care, support, and research. In doing so, we also seek to highlight efforts in AYA cancer care, support, and research that strengthen representation of diverse AYAs and their intersectional identities, perspectives and cancer experiences, and to advocate for more equitable cancer care and support for all AYAs.
Suggested manuscript topics include, but are not limited to:
- Patient-oriented research;
- Participatory action research;
- Patient engagement;
- Peer navigation;
- Systems transformation;
- Patient–clinician partnerships;
- Patient-centered care;
- Equity-oriented cancer care;
- Peer support;
- AYA navigator;
- AYA clinical programming;
- AYA support.
In your submission, be sure to:
- Share how AYAs have been involved in the work presented in your submission, and how AYAs have helped to shape AYA cancer research, care, and support.
- Consider how the work presented represents, reflects, and/or includes diverse, intersectional perspectives, needs and orientations of AYAs.
- Include a bio for each author.
We are particularly interested in submissions that are written/co-written with those with lived experience (e.g., AYAs, caregivers), and we strongly encourage creativity.
- Bleyer, A.; Ferrari, A.; Whelan, J.; Barr, R.D. Global assessment of cancer incidence and survival in adolescents and young adults. Blood Cancer 2017, 64, e26497, https://doi.org/10.1002/pbc.26497.
- A Practical Approach to the Care of Adolescents and Young Adults with Cancer. 2018, https://doi.org/10.1007/978-3-319-66173-5.
- Barr, R.D. Adolescents, young adults, and cancer-the international challenge. Cancer 2011, 117, 2245–2249, https://doi.org/10.1002/cncr.26052.
- Bibby, H.; White, V.; Thompson, K.; Anazodo, A. What Are the Unmet Needs and Care Experiences of Adolescents and Young Adults with Cancer? A Systematic Review. Adolesc. Young- Adult Oncol. 2017, 6, 6–30, https://doi.org/10.1089/jayao.2016.0012.
- Coccia, P.F. Overview of Adolescent and Young Adult Oncology. Oncol. Pr. 2019, 15, 235–237, https://doi.org/10.1200/jop.19.00075.
- Osborn, M.; Johnson, R.; Thompson, K.; Anazodo, A.; Albritton, K.; Ferrari, A.; Stark, D. Models of care for adolescent and young adult cancer programs. Blood Cancer 2019, 66, e27991, https://doi.org/10.1002/pbc.27991.
- Surujballi, J.; Chan, G.; Strahlendorf, C.; Srikanthan, A. Setting Priorities for a Provincial Adolescent and Young Adult Oncology Program. Oncol. 2022, 29, 4034–4053, https://doi.org/10.3390/curroncol29060322.
- Chhatre, S.; Gallo, J.J.; Wittink, M.; Schwartz, J.S.; Jayadevappa, R. Patient-centred outcomes research: perspectives of patient stakeholders. JRSM Open 2017, 8, https://doi.org/10.1177/2054270417738511.
- Frank, L.; Forsythe, L.; Ellis, L.; Schrandt, S.; Sheridan, S.; Gerson, J.; Konopka, K.; Daugherty, S. Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Life Res. 2015, 24, 1033–1041, https://doi.org/10.1007/s11136-014-0893-3.
- Zucca, A.; Sanson-Fisher, R.; Waller, A.; Carey, M. Patient-centred care: making cancer treatment centres accountable. Care Cancer 2014, 22, 1989–1997, https://doi.org/10.1007/s00520-014-2221-4.
- Canadian Institute of Health Research. Strategy for Patient-Oriented Research: Patient Engagement Framework 2014. Available online: https://cihr-irsc.gc.ca/e/48413.html (accessed on 9 March 2023).
- Hammond, C. Against a Singular Message of Distinctness: Challenging Dominant Representations of Adolescents and Young Adults in Oncology. Adolesc. Young- Adult Oncol. 2017, 6, 45–49, https://doi.org/10.1089/jayao.2016.0018.
- Horrill, T.C.; Browne, A.J.; Stajduhar, K.I. Equity-Oriented Healthcare: What It Is and Why We Need It in Oncology. Oncol. 2022, 29, 186–192, https://doi.org/10.3390/curroncol29010018.
Dr. Fiona Schulte
Dr. Cheryl Heykoop
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- adolescents and young adults
- cancer care
- patient-oriented research
- patient engagement
- patient–clinician partnerships
- systems change
- equity-oriented cancer care