Understanding and advancing alignment of the national standards for cancer survivorship care for adolescents and young adults: challenges and opportunities
7 affiliations
- 1Department of Health Promotion and Behavioral Sciences, University of Texas Health Science Center at Houston, School of Public Health, Dallas, TX 75207 USA
- 2Fred Hutchinson Cancer Center, Seattle, WA 98109 USA
- 3Division of Hematology, Oncology and Transplantation, School of Medicine, University of Minnesota, Minneapolis, MN 55455 USA
- 4Division of Pediatric Hematology Oncology, Rutgers Cancer Institute, New Brunswick, NJ 08901 USA
- 5Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA 91101 USA
- 6Department of Population and Public Health Sciences, Keck School of Medicine of the University of Southern California, Los Angeles, CA 90039 USA
- 7Division of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis, MN 55455 USA
Abstract
Purpose: Adolescent and young adult (AYA) cancer survivors experience substantial late and long-term effects and require high-quality survivorship care. This work examines methodological challenges and related opportunities in assessing survivorship care availability, utilization, and key barriers and facilitators for AYAs, using the new National Standards for Cancer Survivorship Care as a guiding framework.
Methods: Studies were conducted across nine geographically diverse health care systems in seven states (CA, FL, MN, NJ, NY, TX, WA), including seven NCI-designated comprehensive cancer centers, a large integrated health care system, and a county safety-net hospital. Designs included retrospective cohort and mixed methods approaches. Data collection methods comprised EHR abstraction; surveys of AYAs, clinicians, and administrators; and in-depth interviews and/or focus groups with AYAs, clinicians, and administrators. Across studies, AYAs were diagnosed between 2014 and 2024, were 15–44 years old at diagnosis, predominantly female, and racially and ethnically diverse, and had common AYA cancers.
Results: Studies encountered challenges in defining survivorship care, accounting for AYA-specific factors, and addressing the complexity of survivorship care and the NCI Standards. First, we observed difficulties in defining and operationalizing survivorship care components, particularly in EHR data and across audiences who differed in how they understood survivorship care. Second, AYA-related factors such as geographic mobility, insurance changes, and fragmented care during young adulthood complicated assessment, especially for longitudinal analyses. Finally, the complexity of survivorship care and of the standards themselves posed substantial measurement challenges. In this context, collaboration and integration of data within and across AYA survivorship studies represent key research opportunities. Addressing known AYA barriers and priorities will be critical for guiding how the survivorship standards are evaluated and incorporated into clinical practice for AYAs.
Implications for Cancer Survivors: Advancing the National Standards for Cancer Survivorship Care for AYAs requires nuanced approaches that integrate multiple perspectives, data sources, and care contexts.
Related
- Aortic valve disease: Novel animal models for advancing our understanding of the underlying mechanisms
- Challenges and opportunities in emotion dynamics research: an interdisciplinary perspective
- Editorial: Silver linings: navigating the challenges and opportunities of organ transplantation in an Ageing population
- Opportunities and challenges in the development of evolving EGFR inhibitors to overcome EGFR TKIs resistance
- Promoting good and equal health by advancing vulnerable students’ employment and income opportunities: Protocol for a multiple method research program leveraging student and school staff perspectives
BibTeX
@article{consortium2026understanding,
title = {{Understanding and advancing alignment of the national standards for cancer survivorship care for adolescents and young adults: challenges and opportunities}},
author = {AYA National Standards for Cancer Survivorship Care Consortium and Andrea C. Betts and K. Scott Baker and Anne H Blaes and Katie A. Devine and Erin E. Hahn and Kimberly A. Miller and Helen M. Parsons and Jean C. Yi},
journal = {Journal of Cancer Survivorship},
year = {2026},
month = oct,
doi = {10.1007/s11764-026-02128-9},
url = {https://doi.org/10.1007/s11764-026-02128-9},
note = {CC BY-NC-ND 4.0},
}
RIS
TY - JOUR
TI - Understanding and advancing alignment of the national standards for cancer survivorship care for adolescents and young adults: challenges and opportunities
AU - AYA National Standards for Cancer Survivorship Care Consortium
AU - Andrea C. Betts
AU - K. Scott Baker
AU - Anne H Blaes
AU - Katie A. Devine
AU - Erin E. Hahn
AU - Kimberly A. Miller
AU - Helen M. Parsons
AU - Jean C. Yi
PY - 2026
DA - 2026/10/01
JO - Journal of Cancer Survivorship
DO - 10.1007/s11764-026-02128-9
UR - https://doi.org/10.1007/s11764-026-02128-9
AB - Purpose: Adolescent and young adult (AYA) cancer survivors experience substantial late and long-term effects and require high-quality survivorship care. This work examines methodological challenges and related opportunities in assessing survivorship care availability, utilization, and key barriers and facilitators for AYAs, using the new National Standards for Cancer Survivorship Care as a guiding framework. Methods: Studies were conducted across nine geographically diverse health care systems in seven states (CA, FL, MN, NJ, NY, TX, WA), including seven NCI-designated comprehensive cancer centers, a large integrated health care system, and a county safety-net hospital. Designs included retrospective cohort and mixed methods approaches. Data collection methods comprised EHR abstraction; surveys of AYAs, clinicians, and administrators; and in-depth interviews and/or focus groups with AYAs, clinicians, and administrators. Across studies, AYAs were diagnosed between 2014 and 2024, were 15–44 years old at diagnosis, predominantly female, and racially and ethnically diverse, and had common AYA cancers. Results: Studies encountered challenges in defining survivorship care, accounting for AYA-specific factors, and addressing the complexity of survivorship care and the NCI Standards. First, we observed difficulties in defining and operationalizing survivorship care components, particularly in EHR data and across audiences who differed in how they understood survivorship care. Second, AYA-related factors such as geographic mobility, insurance changes, and fragmented care during young adulthood complicated assessment, especially for longitudinal analyses. Finally, the complexity of survivorship care and of the standards themselves posed substantial measurement challenges. In this context, collaboration and integration of data within and across AYA survivorship studies represent key research opportunities. Addressing known AYA barriers and priorities will be critical for guiding how the survivorship standards are evaluated and incorporated into clinical practice for AYAs. Implications for Cancer Survivors: Advancing the National Standards for Cancer Survivorship Care for AYAs requires nuanced approaches that integrate multiple perspectives, data sources, and care contexts.
SN - 1932-2259
SN - 1932-2267
ER -