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“Cancer’s a demon”: a qualitative study of fear and multilevel factors contributing to cancer treatment delays

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Abstract

Purpose

Delays initiating cancer therapy are increasingly common, impact outcomes, and have implications for health equity. However, it remains unclear (1) whether patients’ beliefs regarding acceptable diagnostic to treatment intervals align with current guidelines, and (2) to what degree psychological factors contribute to longer intervals. We conducted a qualitative study with patients and cancer care team members (“providers”).

Methods

We interviewed patients with several common solid tumors as well as providers. Interviews were analyzed using an interpretive approach, guided by modified grounded theory.

Results

Twenty-two patients and 12 providers participated. Half of patients had breast cancer; 27% waited >60 days between diagnosis and treatment. Several themes emerged. (1) Patients felt treatment should begin immediately following diagnosis, while providers’ opinion on the goal timeframe to start treatment varied. (2) Patients experienced psychological distress while waiting for treatment. (3) Participants identified logistical, social, and psychological sources of delay. Fear related to multiple aspects of cancer care was common. Emotion-driven barriers could manifest as not taking steps to move ahead, or as actions that delayed care. (4) Besides addressing logistical challenges, patients believed that education and anticipatory guidance, from their care team and from peers, may help overcome psychological barriers to treatment and facilitate the start of therapy.

Conclusions

Patients feel an urgency to start cancer therapy, desiring time frames shorter than those included in guidelines. Psychological distress is frequently both a contributor to, and a consequence of, treatment delays. Addressing multilevel barriers, including psychological ones, may facilitate timely treatment and reduce distress.

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Data availability

Interview data are not shared due to privacy and ethical restrictions.

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Funding

This work was funded by a Conquer Cancer – Herman H. Freckman, MD, Endowed Young Investigator Award.

Author information

Authors and Affiliations

Authors

Contributions

Conceptualization: ZAKF, CYF; study design: all authors; data curation: LMJ, CSO, ACB, CJM; formal analysis: ZAKF, LMJ, CSO, CYF; funding acquisition: ZAKF; investigation: all authors; methodology: all authors; project administration: LMJ, CSO, ACB, CJM; resources: ZAKF, CYF; supervision: ZAKF, CYF; writing — original draft: ZAKF, LMJ, CSO, CYF; writing — review and editing: all authors.

Corresponding author

Correspondence to Zachary A. K. Frosch.

Ethics declarations

Ethical approval

This study was approved by the Fox Chase Cancer Center Institutional Review Board (#21-8013).

Informed consent

All participants provided informed consent to participate in this study.

Competing interests

Dr. Frosch reports grants from the Conquer Cancer Foundation of ASCO in support of this study and the following unrelated to the conduct of this study: Advisory Board fees from Seagen, research funds to institution from Roche, AstraZenica, and Abbvie. Dr Lynch reported personal fees from Beautycounter for serving as a consultant outside the submitted work. Dr Hall reports serving on advisory boards for Natera and Eisai outside the submitted work. Dr Edelman reports serving as a member of data safety monitoring boards for AstraZeneca, Takeda, GlaxoSmithKline, Seagen; serving on advisory boards for GE Health Care, Omega Therapeutics, BioAltaBioAtla, Regeneron/Sanofi, Novocure, InterVenn, Flame; and holding stock options for Creatv MicrotTech, all outside of the submitted work. Dr. Bleicher reports consulting fees for Elucent Medical unrelated to this study.

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Frosch, Z.A.K., Jacobs, L.M., O’Brien, C.S. et al. “Cancer’s a demon”: a qualitative study of fear and multilevel factors contributing to cancer treatment delays. Support Care Cancer 32, 13 (2024). https://doi.org/10.1007/s00520-023-08200-9

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