The work, led by Andrea C. Betts of the University of Texas Health Science Center at Houston together with the AYA National Standards for Cancer Survivorship Care Consortium, synthesizes lessons from five studies funded by the National Cancer Institute. The studies spanned nine health care systems across seven states—California, Florida, Minnesota, New Jersey, New York, Texas, and Washington—including seven NCI-designated comprehensive cancer centers, a large integrated health care system, and a county safety-net hospital. Using retrospective cohort and mixed-methods designs, the teams mined electronic health records, surveyed AYAs, clinicians, and administrators, and conducted in-depth interviews and focus groups with survivors diagnosed between 2014 and 2024, aged 15 to 44 at diagnosis, predominantly female, and racially and ethnically diverse. Their cancers reflected the typical AYA spectrum: brain tumors, breast and colorectal cancer, gynecologic malignancies, leukemia, lymphoma, melanoma, sarcomas, testicular and thyroid cancers.

The benchmark against which all of this care was measured is the new National Standards for Cancer Survivorship Care, a framework that defines the essential components of a survivorship program—from screening for late effects to psychosocial assessment and referrals to supportive services. On paper, many of the standards look tailor-made for measurement through structured electronic health record data. Take the recommendation to assess emotional and psychological effects of cancer and refer patients for treatment when needed. In theory, an evaluator could simply count documented screenings for depression, anxiety, or distress, categorize the scores, and track referrals to behavioral health for patients whose scores crossed a threshold. In practice, the researchers found, that seemingly simple pathway is riddled with hidden decision points that can quietly distort the picture of care.

The first and most formidable challenge is simply identifying a longitudinal cohort of AYA survivors inside the record system. This is a population in constant motion. Survivors change insurance plans, move across state lines, and bounce between pediatric and adult care, oncology and primary care. A young woman might receive her diagnosis and treatment at an academic cancer center, undergo maintenance therapy at a community cancer center after relocating, and eventually land in a primary care practice where the original cancer diagnosis is lost or altered in the record. If a survivor cannot be reliably identified, she cannot be counted—and if she cannot be counted, the quality of the care she receives cannot be assessed.

Even when a survivor is successfully identified, the data available to any single institution are fragmentary. If the academic cancer center that treated the initial tumor tries to evaluate distress screening rates among its AYA population, its electronic health record contains no information about what happened after the survivor transferred elsewhere. The assessment is truncated at the moment of the care switch—and unless the evaluation team can detect that the switch occurred, the survivor may be incorrectly recorded as never having been screened. Defining denominators, the pool of patients eligible for a recommended service, poses its own problems. Fertility service referral, a near-universal recommendation for this population, illustrates the trap: a referral may be documented, but whether the patient actually saw a fertility specialist in a different system, declined the service, was unable to afford it, or was never offered it may live only in free-text visit notes, invisible to structured queries. Capturing true outcomes, the authors conclude, likely requires linking records to claims data, surveys, and qualitative sources.

The human side of the measurement problem proved just as thorny. AYAs themselves often have limited awareness of what survivorship care even is, shaped by developmental stage, competing life priorities such as school and work, and inconsistent communication across the many settings they pass through. Many have little prior experience navigating the health care system and report diagnostic delays and access struggles that erode their confidence that their complex needs will be met. Clinicians, meanwhile, operate under fundamentally different models: pediatric oncology is family-centered and multidisciplinary, while adult oncology places the burden of navigation squarely on the patient. The field also lacks validated patient-reported outcome and experience measures that span the full developmental range of the AYA population, undermining comparability across studies and systems.

Strikingly, the studies found that clinicians’ and administrators’ perceptions of the survivorship care being delivered diverged from what AYAs themselves reported receiving. Survivors described a deficit of evaluation on issues that matter most to them—financial concerns, insurance worries, fertility—and in qualitative interviews they described poor coordination across health systems and a sense of being personally responsible for driving communication between providers just to obtain needed care. Clinicians and administrators, for their part, endorsed the importance of evaluation under the new standards but pointed to implementation barriers, including the geographic mobility and fragmented care that make AYAs so hard to follow in the first place.

There is also a deeper conceptual tension. The survivorship standards were designed for universal application to all cancer survivors, yet some clinicians interviewed in the studies were uncertain how the standards would specifically move the needle for AYAs beyond their general applicability. Generating and disseminating standards, clinicians emphasized, is necessary but not sufficient; the harder task is making them change care for individual patients. Because AYAs represent a small fraction of adult cancer patients while facing decades of elevated risk and distinct medical, psychosocial, and financial concerns, institutions may need to adapt implementation by age group. The researchers suggest concrete examples: fertility preservation and restoration should be explicitly highlighted for AYAs with established referral pathways and identified financial assistance resources; insurance assessments should account for limited health insurance literacy and prepare survivors for coverage changes that coincide with life transitions, such as aging out of parental plans at 26; and psychosocial and financial screening should be age-appropriate enough to capture the realities of young adulthood.

The path forward, the authors argue, demands investment at both policy and research levels. Data infrastructure must be strengthened and data sharing enabled within and across health systems, because the same fragmentation that hampers research also hampers care coordination for a population that may change care sources multiple times across a lifetime. Linking health system data to population-based sources would allow evaluation of the standards at scale, though existing national resources such as SEER–Medicare cover only adults 65 and older and offer little for AYAs. Critically, future efforts must extend beyond academic centers into community oncology settings, where most AYAs actually receive their care, and into primary care, which is increasingly tasked with lifelong survivorship follow-up. And because AYA survivors are a relatively rare population, single-site studies—even at large centers—lack the sample size, diversity, and follow-up needed for meaningful longitudinal evaluation. Multisite collaborations, the researchers conclude, are the only realistic route to coordinated cohorts large enough to compare how the standards are measured and experienced across systems, and to test interventions that could finally translate a well-intentioned national framework into tangible, equitable care for young survivors.

Subject of Research: Assessing alignment of national cancer survivorship care standards for adolescent and young adult cancer survivors across US health systems

Article Title: Understanding and advancing alignment of the national standards for cancer survivorship care for adolescents and young adults: challenges and opportunities

Article References: AYA National Standards for Cancer Survivorship Care Consortium, Betts, A. C., Baker, K. S., Blaes, A. H., Devine, K. A., Hahn, E. E., Miller, K. A., Parsons, H. M., & Yi, J. C. (2026). Understanding and advancing alignment of the national standards for cancer survivorship care for adolescents and young adults: challenges and opportunities. Journal of Cancer Survivorship. https://doi.org/10.1007/s11764-026-02128-9

Image Credits: AI Generated

DOI: 10.1007/s11764-026-02128-9

Keywords: cancer survivorship, adolescent and young adult cancer, AYA oncology, National Standards for Cancer Survivorship Care, electronic health records, survivorship care delivery, health services research, patient-reported outcomes, fertility preservation, health insurance, care coordination, NCI-designated cancer centers

Baskin will oversee a large, multidisciplinary cancer center comprising 250 scientists and clinical investigators. She will be the fifth director since Massey received its National Cancer Institute (NCI) designation in 1975—an inflection point that underscores how the center’s priorities are evolving alongside national expectations for translational impact and equity-focused outreach.

Her career has centered on a community-to-bench model of cancer care. Rather than treating engagement as an afterthought, Baskin’s approach integrates behavioral, social, and environmental determinants into the design of prevention, screening, treatment, and survivorship strategies. This framework supports technical pathways that connect real-world constraints—access, trust, and context—with measurable clinical and behavioral outcomes.

A major emphasis in her work involves lifestyle interventions aimed at improving cancer-related behaviors and health outcomes, including diet, physical activity, and obesity risk. Such outcomes are particularly relevant for rural populations and communities that have historically faced barriers to cancer prevention and care. By targeting modifiable behaviors, her research translates population-level risk factors into intervention-ready programs.

VCU President Michael Rao, Ph.D., highlighted Baskin’s publication record and community-centered research as central to her readiness for the role. He also noted her recent performance as Massey’s deputy director, describing her as a driver of cutting-edge research with direct impact for the center’s catchment area.

Since joining Massey in February 2025, Baskin has strengthened the center’s influence across central, southern, and eastern Virginia. She has also elevated Massey’s national profile through leadership in academic societies, including former presidency of the Society of Behavioral Medicine (SBM) and board service roles connected to academic medical centers and community outreach and education.

Baskin’s motivation is personal as well as scientific. Raised in Atlanta, she lost her father to colorectal cancer during her senior year of high school, and later experienced additional family losses to cancer. Those events guided her training in psychology and her focus on cancer prevention, early detection, and mental health.

With more than $70 million in National Institutes of Health (NIH) grant involvement as a principal investigator or team leader, Baskin has also contributed to Cancer Center Support Grant (CCSG) review panels. That experience positions her to lead Massey through renewal of its CCSG and comprehensive-designated status, which the center earned for the first time in 2023.

Beyond directing Massey, she serves as associate dean for cancer innovation in the VCU School of Medicine and holds professor appointments spanning internal medicine and social and behavioral sciences. Her appointment is expected to reinforce a data-driven, equity-forward translation engine—one that aims to reduce cancer burden through both science and community partnership.

Subject of Research: Community-to-bench cancer prevention and lifestyle interventions (behavioral, social, and environmental determinants)
Article Title: Monica L. Baskin to Become Next Director of VCU Massey Comprehensive Cancer Center
News Publication Date:
Web References:
References:
Image Credits: VCU Massey Comprehensive Cancer Center
Keywords: VCU Massey, Monica L. Baskin, cancer center director, community-to-bench model, NCI-designated, cancer prevention, screening, lifestyle interventions, health equity, rural health

Dr. Boutros will also assume roles as senior vice president of data sciences and professor, continuing his distinguished career trajectory that melds computational biology with clinical insights. Before this appointment, he was a professor at UCLA’s David Geffen School of Medicine, with joint appointments in human genetics and urology, and served as interim vice dean for research. His research prowess lies in harnessing artificial intelligence (AI), machine learning (ML), and the computational sciences to decode voluminous, complex datasets inherent in modern oncological studies, which are crucial for designing innovative and predictive cancer research projects.

At the core of Boutros’ scientific inquiry is the integration of diverse datasets — clinical, molecular, and imaging — to personalize cancer therapies. His commitment to identifying precise biomarkers epitomizes a critical shift in oncology: moving beyond one-size-fits-all treatments to precision medicine strategies that maximize therapeutic benefit while minimizing adverse effects. According to Sanford Burnham Prebys CEO David A. Brenner, Dr. Boutros exemplifies pioneering “over-the-horizon thinking,” using rapidly evolving computational methods to tackle previously insurmountable questions in cancer biology and treatment.

Paul Boutros’ academic background underpins his groundbreaking approach. He earned his Bachelor of Science in Chemistry from the University of Waterloo in 2004, followed by a PhD in Medical Biophysics from the University of Toronto in 2008, where he additionally completed an executive MBA. His early research career began at the Ontario Institute for Cancer Research, where he progressed from fellow to principal investigator. Throughout his career, Boutros has published over 200 peer-reviewed articles and received numerous accolades, including the Dorval Prize by the Canadian Cancer Society, recognizing the top early career investigator nationwide.

The Sanford Burnham Prebys Cancer Center’s mission reflects a focus on fundamental cancer biology and translational studies that drive novel clinical applications. Faculty expertise spans multiple disciplines, including cell biology, immunology, epigenetics, metabolism, aging, and computational science. Collaborations with the Center for Therapeutics Discovery and the Center for Data Science and Artificial Intelligence further augment the center’s capabilities, promoting innovation at the intersection of biological research and computational analysis.

A recent notable example of Boutros’ innovative research leverages AI and computational tools to investigate the interplay between exercise and prostate cancer progression. Prostate cancer remains the second leading cause of cancer deaths among American men, and despite its prevalence, the role of lifestyle interventions like exercise in altering disease trajectory has been poorly quantified under controlled conditions. In a 2024 study published in JAMA Oncology, Boutros and colleagues carried out a decentralized, Phase I controlled trial examining how prescribed treadmill walking impacts biomarkers linked to prostate cancer outcomes.

The trial enrolled 53 previously inactive men aged 47 to 74 with diagnosed prostate cancer, equipping participants nationwide with a home treadmill, smartwatch, iPad, and other health monitoring devices. This infrastructure allowed real-time remote supervision of exercise regimens ranging from 90 to 450 minutes per week. The dual biomarkers assessed were Ki-67, a proliferative index marking the rate of cancer cell division, and prostate-specific antigen (PSA), an established marker for prostate cancer risk and progression. Their methodological rigor ensured quantifiable evaluation of exercise dose and corresponding biological impact.

Findings from this pioneering trial revealed that high levels of exercise were safely tolerated and that exercising approximately 225 minutes weekly emerged as the optimal “dose” for mitigating prostate cancer risk, as evidenced by favorable changes in Ki-67 and PSA biomarkers. Lesser durations yielded no significant biomarker change, while more extensive exercise produced only marginally increased benefits. This outcome signals a potential paradigm shift in prostate cancer management, suggesting that precisely prescribed exercise could function as an adjunct therapy, modifiable through computational precision.

Building upon this work, Boutros’ team has initiated a multi-institutional Phase 2 clinical trial, now listed on ClinicalTrials.gov, to compare the progression of prostate cancer in men performing targeted exercise regimens to those following typical activity levels. The integration of wearable technology, real-time data analytics, and personalized exercise prescriptions exemplifies how computational medicine can redefine treatment approaches. This strategy juxtaposes traditional pharmaceutical interventions with novel lifestyle-modification therapies under data-driven oversight.

In sum, Paul Boutros embodies the transformative power of computational biology and data science in oncology. His leadership at Sanford Burnham Prebys is poised to accelerate fundamental discoveries and translation into clinical innovation. By bridging artificial intelligence, big data, and patient-centered trials, Boutros is setting a new standard for combating complex diseases like cancer through integrative, technology-empowered research paradigms. As the landscape of cancer research evolves, computationally driven insights such as these are critical to developing precision oncology that improves outcomes for millions globally.

Subject of Research: Computational Biology and Cancer Research, Exercise Therapy in Prostate Cancer
Article Title: Paul Boutros Appointed Director of Sanford Burnham Prebys Cancer Center, Pioneers Computational Oncology and Exercise Therapy Research
News Publication Date: 2024
Web References:
– National Cancer Institute Cancer Centers: https://www.cancer.gov/research/infrastructure/cancer-centers
– JAMA Oncology Exercise Trial Article: https://jamanetwork.com/journals/jamaoncology/fullarticle/2821207
– Sanford Burnham Prebys Centers:
– Center for Therapeutics Discovery: https://sbpdiscovery.org/research/centers/center-for-therapeutics-discovery/
– Center for Data Science and Artificial Intelligence: https://sbpdiscovery.org/research/centers/center-for-data-science/
– Clinical Trial Registration: https://www.clinicaltrials.gov/study/NCT05751434
Image Credits: Sanford Burnham Prebys
Keywords: Cancer, Prostate cancer, Physical exercise, Computational biology, Informatics, Computer science, Machine learning, Artificial intelligence