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Survivorship concerns among individuals diagnosed with metastatic cancer: Findings from the Cancer Experience Registry

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Abstract

Introduction

Individuals with metastatic cancer experience many medical, physical, and emotional challenges due to changing medical regimens, oscillating disease states, and side effects. The purpose of this study was to describe the type and prevalence of survivorship concerns reported by individuals with metastatic cancer, and their associations with cancer diagnosis, treatment, and socio-demographic variables.

Methods

This study utilized data from the Cancer Support Community’s Cancer Experience Registry. Individuals were included if they self-reported a solid tumor metastatic cancer and completed CancerSupportSource, which evaluates five domains of concerns (emotional well-being, symptom burden, body image/healthy lifestyle, healthcare team communication, and relationships/intimacy). Multivariable linear regression examined associations between independent predictors of each survivorship concern domain.

Results

Of the 403 included participants, individuals reported a metastatic diagnosis of breast (43%), colorectal (20%), prostate (7%), lung (7%), gynecologic cancer (6%) and other. Nearly all (96%) reported at least one survivorship concern, with the most prevalent concern about cancer progression or recurrence. Survivorship concerns were higher across multiple domains for individuals unemployed due to disability. Individuals who were less than five years since diagnosis reported higher concerns related to emotional well-being, symptom burden, and healthcare communication compared to those more than five years since diagnosis.

Conclusion

Individuals with metastatic cancer experience a variety of moderate-to-severe survivorship concerns that warrant additional investigation.

Implications for cancer survivors

As the population of individuals with metastatic cancer lives longer, future research must investigate solutions to address modifiable factors associated with survivorship concerns, such as unemployment due to disability.

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Data availability

The datasets analyzed during the current study are available from the corresponding author on reasonable request.

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Acknowledgements

The article was prepared as part of some of the authors’ (MAM, LG, ET, KC) official duties as employees of the US Federal Government. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute. PBJ worked on this project during his tenure in the Division of Cancer Control and Population Sciences, National Cancer Institute. He is now retired from federal service.

Funding

Funding for the Cancer Experience Registry was provided by Astellas Pharma, Bristol Myers Squibb, Genentech, Geron, GSK, Janssen Oncology, Merck, Novartis, Pfizer, Pharmacyclics, Seagen, Taiho Oncology, Takeda Oncology, AbbVie, Amgen, AstraZeneca, Bristol-Myers Squibb, Celgene, Eli Lilly and Company, EMD Serono, Genentech (a member of the Roche Group), GlaxoSmithKline, Janssen Pharmaceuticals, Jazz Pharmaceuticals, Novartis, Pfizer, Pharmacyclics, Seagen, and Takeda Pharmaceutical.

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Authors and Affiliations

  1. Division of Cancer Control and Population Sciences, National Cancer Institute, 9609 Medical Center Drive, Rockville, MD, 20850, USA

    Rachelle S. Brick, Lisa Gallicchio, Michelle A. Mollica, Emily S. Tonorezos, Paul B. Jacobsen & Kathleen M. Castro

  2. Department of Research, CancerCare, 275 Seventh Avenue, New York, NY, 10001, USA

    Alexandra K. Zaleta

  3. Research and Training Institute, Cancer Support Community, 5614 Connecticut Avenue NW, Suite 280, Washington, D.C, 20015, USA

    Melissa F. Miller

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Contributions

M.A.M, A.Z., L.G., K.C., R.B., E.T., P.J., M.M. were responsible for research conceptualization; M.M. conducted the analyses; R.B., M.A.M, L.G., and M.M. wrote the main manuscript text in collaboration with all authors; All authors reviewed the study design, results, and the manuscript.

Corresponding author

Correspondence to Melissa F. Miller.

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Ethical approval

Ethical and Independent Review Services (E&I, Independence, MO) served as the IRB of record (Study #23044). All procedures were in accordance with the ethical standards of the institutional research committee for studies involving human participants and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all participants.

Competing interests

Dr. Zaleta reports conducting research in the past two years funded by: Astellas Pharma, Boston Scientific Foundation, Novartis, and Seagen; funding was received by Cancer Support Community. Dr. Miller reports institutional research grants from Astellas Pharma, BeiGene, Bristol Myers Squibb, Genentech, Geron, Gilead Sciences, GSK, Janssen Oncology, Merck, Novartis, Pfizer, Seagen, Taiho Oncology, and Takeda Oncology.

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Brick, R.S., Gallicchio, L., Mollica, M.A. et al. Survivorship concerns among individuals diagnosed with metastatic cancer: Findings from the Cancer Experience Registry. J Cancer Surviv (2024). https://doi.org/10.1007/s11764-024-01573-8

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