Understanding symptomatic experience, impact, and emotional response in recently diagnosed metastatic castration-resistant prostate cancer: a qualitative study

Abstract

Purpose

We sought to explore the symptomatic experience of men recently told their castration-resistant prostate cancer has metastasized (mCRPC); the impact and emotional response to this; the emotional burden of monitoring development to metastatic status; and the emotional impact on the primary support person (PSP).

Methods

Interviews were conducted with 25 men recently diagnosed with mCRPC from the United States (US), France, and Germany. We also interviewed 14 PSPs. Thematic analysis was conducted using Atlas.ti.

Results

The mean age of patients was 72.2 years; mean time since metastasis 7.8 months. The most frequent symptoms were fatigue/tiredness, sexual dysfunction, and pain. Metastasis had a negative emotional impact on the patient and PSP. Some explicitly associated certain symptoms/impacts with metastasis, such as localized pain, diarrhea, blood in stool, and increased impact on activities of daily living. About 72% of patients highlighted the emotional impact of a metastatic diagnosis, reporting worry/anxiety/fear, low mood/depression, shock, increased burden on PSP, and strain on relationships. Monitoring prostate-specific antigen (PSA) values was important; ten patients explicitly discussed feeling fear/worry when PSA was rising, and glad/happy/excited when PSA was falling. Most reported that, if a medication had been available to them to delay metastasis, they would have taken it, even if they were asymptomatic.

Conclusions

Interviews highlighted the substantial burden of mCRPC to both patient and PSP. Development of metastasis was associated with symptoms worsening rather than the development of new symptoms, with physical and emotional impacts. Most patients were willing to take a medication to delay metastasis.

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Acknowledgments

Editorial assistance under the authors’ guidance was provided by Drs Shirley Samuel and Amlan RayChaudhury, Clinical Outcomes Solutions (Chicago, IL, USA).

Funding

Funding for this study was provided by Janssen.

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Authors

Corresponding author

Correspondence to Jason A. Randall.

Ethics declarations

All study documents were submitted and approved by the ethics boards in each country. The study was performed in accordance with the Declaration of Helsinki and US 21 Code of Federal Regulations [12]. All participants (men with mCRPC and their PSPs) provided written informed consent and received a small stipend for their participation. Recruiting physicians also received reimbursement for each participant recruited.

Conflict of interest

CB, JAR, and TS are employees of Clinical Outcomes Solutions, which received funding from Janssen to perform this study. JL, LD, ALG, BE, and KM are employees of Janssen Global.

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Burbridge, C., Randall, J.A., Lawson, J. et al. Understanding symptomatic experience, impact, and emotional response in recently diagnosed metastatic castration-resistant prostate cancer: a qualitative study. Support Care Cancer 28, 3093–3101 (2020). https://doi.org/10.1007/s00520-019-05079-3

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Keywords

  • Qualitative
  • Interview
  • Prostate cancer
  • Metastasis
  • Castration resistant