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

Rachelle S Brick; Lisa Gallicchio; Michelle A Mollica; Alexandra K Zaleta; Emily S Tonorezos; Paul B Jacobsen; Kathleen M Castro; Melissa F Miller

doi:10.1007/s11764-024-01573-8

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

J Cancer Surviv. 2024 Apr 9. doi: 10.1007/s11764-024-01573-8. Online ahead of print.

Authors

Rachelle S Brick¹, Lisa Gallicchio¹, Michelle A Mollica¹, Alexandra K Zaleta², Emily S Tonorezos¹, Paul B Jacobsen¹, Kathleen M Castro¹, Melissa F Miller³

Affiliations

¹ Division of Cancer Control and Population Sciences, National Cancer Institute, 9609 Medical Center Drive, Rockville, MD, 20850, USA.
² Department of Research, CancerCare, 275 Seventh Avenue, New York, NY, 10001, USA.
³ Research and Training Institute, Cancer Support Community, 5614 Connecticut Avenue NW, Suite 280, Washington, D.C, 20015, USA. melissa@cancersupportcommunity.org.

PMID: 38592607
DOI: 10.1007/s11764-024-01573-8

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.

Keywords: Cancer; Concerns; Distress; Metastatic; Survivor; Unmet needs.