Developing national cancer survivorship standards to inform quality of care in the United States using a consensus approach

Michelle A Mollica; Gina McWhirter; Emily Tonorezos; Joshua Fenderson; David R Freyer; Michael Jefford; Christopher J Luevano; Timothy Mullett; Shelley Fuld Nasso; Ethan Schilling; Vida Almario Passero; National Cancer Survivorship Standards Subject Matter Expert Group

doi:10.1007/s11764-024-01602-6

Developing national cancer survivorship standards to inform quality of care in the United States using a consensus approach

J Cancer Surviv. 2024 May 13. doi: 10.1007/s11764-024-01602-6. Online ahead of print.

Authors

Michelle A Mollica¹, Gina McWhirter², Emily Tonorezos³, Joshua Fenderson^{4

5}, David R Freyer^{6

7}, Michael Jefford^{8

9

10}, Christopher J Luevano¹¹, Timothy Mullett¹², Shelley Fuld Nasso¹³, Ethan Schilling¹⁴, Vida Almario Passero^{15

16

17}; National Cancer Survivorship Standards Subject Matter Expert Group

Collaborators

National Cancer Survivorship Standards Subject Matter Expert Group:
Catherine Alfano, Precilla Belin, Anne Blaes, Hillary Cavanagh, Lanie Francis, David R Freyer, Danielle Friedman, Shelley Fuld Nasso, Patricia Ganz, Min He, Batsheva Honig, Shawna Hudson, Linda Jacobs, Michael Jefford, Nancy Keating, Anne Kirchoff, Michelle Kirschner, Ron Kline, Jessica MacIntyre, Molly Maher, Deborah Mayer, Janette Merrill, Timothy Mullett, Larissa Nekhlyudov, Frank Penedo, Mackenzi Pergolotti, Michael Roth, Tara Sanft, Alyssa Schatz, Ethan Schilling, Kathryn Schmitz, Lisa Schwartz, Emily Tonorezos

Affiliations

¹ Division of Cancer Control and Population Sciences, National Cancer Institute, 9609 Medical Center Drive, MSC 9712, Room 3E440, Bethesda, MD, 20892-9762, USA. michelle.mollica@nih.gov.
² Department of Veterans Affairs, National Oncology Program, Washington, DC, USA.
³ Division of Cancer Control and Population Sciences, National Cancer Institute, 9609 Medical Center Drive, MSC 9712, Room 3E440, Bethesda, MD, 20892-9762, USA.
⁴ Hematology/Oncology Service, Brooke Army Medical Center, Defense Health Agency, San Antonio, TX, USA.
⁵ Uniformed Services University of Health Sciences, Bethesda, MD, USA.
⁶ Keck School of Medicine, University of Southern California, Los Angeles, CA, USA.
⁷ Children's Hospital Los Angeles and USC Norris Comprehensive Cancer Center, Los Angeles, CA, USA.
⁸ Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia.
⁹ Australian Cancer Survivorship Centre, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia.
¹⁰ Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, VIC, Australia.
¹¹ Office of The Assistant Secretary of Defense for Health Affairs, Department of Defense, Washington, DC, USA.
¹² Department of Surgery, College of Medicine, University of Kentucky, Lexington, KY, USA.
¹³ National Coalition for Cancer Survivorship, Silver Spring, MD, USA.
¹⁴ Cancer Survivorship Advocate, Carolina Pediatric Therapy, Asheville, NC, USA.
¹⁵ Division of Hematology/Oncology, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA.
¹⁶ Section of Hematology/Oncology, VA Pittsburgh Healthcare System, Pittsburgh, PA, USA.
¹⁷ VA National TeleOncology, Durham, NC, USA.

PMID: 38739299
DOI: 10.1007/s11764-024-01602-6

Abstract

Purpose: To develop United States (US) standards for survivorship care that informs (1) essential health system policy and process components and (2) evaluation of the quality of survivorship care.

Methods: The National Cancer Institute and the Department of Veterans Affairs led a review to identify indicators of quality cancer survivorship care in the domains of health system policy, process, and evaluation/assessment. A series of three virtual consensus meetings with survivorship care and research experts and advocates was conducted to rate the importance of the indicators and refine the top indicators. The final set of standards was developed, including ten indicators in each domain.

Results: Prioritized items were survivor-focused, including processes to both assess and manage physical, psychological, and social issues, and evaluation of patient outcomes and experiences. Specific indicators focused on developing a business model for sustaining survivorship care and collecting relevant business metrics (e.g., healthcare utilization, downstream revenue) to show value of survivorship care to health systems.

Conclusions: The National Standards for Cancer Survivorship Care can be used by health systems to guide development of new survivorship care programs or services or to assess alignment and enhance services in existing survivorship programs. Given the variety of settings providing care to survivors, it is necessary for health systems to adapt these standards based on factors including age-specific needs, cancer types, treatments received, and health system resources.

Implications for cancer survivors: With over 18 million cancer survivors in the United States, many of whom experience varied symptoms and unmet needs, it is essential for health systems to have a comprehensive strategy to provide ongoing care. The US National Standards for Survivorship Care should serve as a blueprint for what survivors and their families can anticipate after a cancer diagnosis to address their needs.

Keywords: Care quality; Health system; Survivor; Survivorship.