Developing a Comprehensive Adolescent and Young Adult Cancer Program: Lessons Learned from 7 Years of Growth and Progress

Haines, Emily; Lux, Lauren; Stein, Jane; Swift, Catherine; Matson, Melissa; Childers, Julie; Kleissler, Daniel; Mayer, Deborah K.; Steiner, Naama; Steiner, Lucy; Rosenstein, Donald L.; Gold, Stuart; Smitherman, Andrew B.

doi:10.1089/jayao.2023.0015

Cited by 3 publications

(3 citation statements)

References 37 publications

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“…The lesson learned was that when AYA care becomes an explicit organization-wide priority, it becomes easier to garner support from all stakeholders, including senior leadership. Having the backing of the cancer agency's leadership team and getting other stakeholders to champion the cause is a proven strategy in AYA program development [11,12]. Any new AYA program would be well served by connecting with key individuals and departments that oversee the development of organizational strategic plans to help make AYA care a shared goal within their cancer agency.…”

Section: Funding and Cancer Organization Supportmentioning

confidence: 99%

“…These instructive focus group sessions with AYAs provided the insight and direction necessary to formulate a new proposal for program expansion that would lead to substantial growth and establish a truly multidisciplinary AYA program. Focusing on the experiences and voices of AYA patients and allowing that to guide AYA program development has been a successful strategy in other jurisdictions, and CCMB is following this patient-centred approach [11,19]. It should come as no surprise that there is tremendous value in authentically engaging AYAs themselves to help formulate the goals and future directions of an AYA program.…”

Section: Identifying the Current Unmet Needs Of Ayasmentioning

confidence: 99%

“…The lesson here is that program creation and expansion often do not take hold on a first attempt. Other AYA programs have experienced similar obstacles, where the multidisciplinary team can only be fleshed out over time, not all at once [11,20]. AYA programs everywhere can double back on their efforts, modify their approach, and continue advocating for increased AYA resources.…”

Section: Acquisition Of New Funding For Developing a Multidisciplinar...mentioning

confidence: 99%

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Developing an Adolescent and Young Adult Oncology Program in a Medium-Sized Canadian Centre: Lessons Learned

Scott,

Oberoi

2024

Current Oncology

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The Adolescent and Young Adult (AYA) Program at CancerCare Manitoba (CCMB) has experienced tremendous growth since its inception. This report provides an overview of how the AYA program at CCMB was established and the crucial factors that led to its early accomplishments and continued expansion. These factors included actions and decisions made at the individual and organizational level that helped lay a strong foundation for the program’s sustained success. We hope that some of these lessons learned can be adapted and implemented by other oncology agencies to improve the care outcomes and experiences of AYAs living with cancer.

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Section: Funding and Cancer Organization Supportmentioning

confidence: 99%

Section: Identifying the Current Unmet Needs Of Ayasmentioning

confidence: 99%

Section: Acquisition Of New Funding For Developing a Multidisciplinar...mentioning

confidence: 99%

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Developing an Adolescent and Young Adult Oncology Program in a Medium-Sized Canadian Centre: Lessons Learned

Scott,

Oberoi

2024

Current Oncology

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University of North Carolina adolescent and young adult cancer program: reach and characteristics of care

Stein,

Wardell,

Ritzwoller

et al. 2024

JNCI Cancer Spectrum

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Cancer care organizations often struggle to adequately address the unique needs of AYA cancer patients, resulting in poorer outcomes compared to other age groups. Creation of AYA cancer programs serves to bridge this gap and improve quality of care for this population. We aimed to describe the evolution and impact of the University of North Carolina (UNC) at Chapel Hill’s AYA Cancer Program. To do so, we conducted a retrospective cohort study utilizing electronic health record (EHR) data matched with NC Cancer Registry data from 2014–2022. Between 2014 to 2022, 4,016 AYAs (aged 13-39) received cancer care at UNC Medical Center, with 670 having contact with the AYA Cancer Program. Program-contacted patients were younger, more likely to be non-Hispanic Black, and more likely to have metastatic disease or hematologic malignancies. We saw a steady increase in patient volume over the study period, corresponding with program growth.

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Exploring unmet needs and preferences of young adult stroke patients for post-stroke care through PROMs and gender differences

Ibrahim,

Francis,

Sheehan

et al. 2024

Front. Stroke

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BackgroundStroke incidence among young adults of working age (under 65 years of age) has significantly increased in the past decade, with major individual, social, and economic implications. There is a paucity of research exploring the needs of this patient population. This study assessed: (1) young adult stroke patients' physical, psychological, and occupational functioning and health-related quality of life (HRQoL); and (2) post-stroke care preferences using patient-reported outcome measures (PROMs), with attention to gender differences.MethodsA cross-sectional pilot study was conducted. Sociodemographic and clinical characteristics were collected through chart review and data on occupational function, physical, psychological, and social wellbeing >90 days post-stroke through a self-reported survey. Descriptive statistics, gender-based, and regression analyses were conducted.ResultsThe sample included 85 participants. Participants reported impairments in both, occupational functioning, with 58.7% not returned to work (RTW), and HRQoL, specifically with social activities (37%), anxiety (34%), and cognitive function (34%). Women had significantly (p < 0.05) worse physical symptoms (sleep disturbance and fatigue), emotional health (depression, stigma, emotional dyscontrol) scores, and sense of self-identify post-stroke. Over 70% of participants preferred in-person post-stroke care led by health care providers and felt they would have benefited from receiving information on physical health (71.4%), emotional and psychological health (56.0%), RTW (38.1%), and self-identity (26.2%) post-stroke. Women preferred cognitive behavioral therapy (p = 0.018) and mindfulness-based stress reduction therapy (p = 0.016), while men preferred pharmacotherapy (p = 0.02) for psychological symptoms.ConclusionThis is the first study to report impaired HRQoL, psychological and occupational functioning using PROMs, with significant gender differences and preferences for post-stroke care delivery among young adult stroke patients at >90 days after stroke. The findings highlight the importance of needs, gender, and age-specific post-stroke education and interventions.

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Developing a Comprehensive Adolescent and Young Adult Cancer Program: Lessons Learned from 7 Years of Growth and Progress

Cited by 3 publications

References 37 publications

Developing an Adolescent and Young Adult Oncology Program in a Medium-Sized Canadian Centre: Lessons Learned

Developing an Adolescent and Young Adult Oncology Program in a Medium-Sized Canadian Centre: Lessons Learned

University of North Carolina adolescent and young adult cancer program: reach and characteristics of care

Exploring unmet needs and preferences of young adult stroke patients for post-stroke care through PROMs and gender differences

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