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“I think that a brief conversation from their provider can go a very long way”: Patient and provider perspectives on barriers and facilitators of genetic testing after ovarian cancer

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Abstract

Objective

Identify predisposing, enabling, and reinforcing factors impacting genetic counseling/testing among ovarian cancer patients guided by Green and Kreuter’s PRECEDE-PROCEED model.

Methods

Gynecologic oncology providers (N = 4), genetic counselors (N = 4), and ovarian cancer patients (N = 9) completed semi-structured qualitative interviews exploring participants’ knowledge of and experiences with genetic counseling/testing. Interviews were audio recorded, transcribed verbatim, and analyzed using inductive content analysis by two independent raters.

Results

Thematic analysis identified predisposing, enabling, and reinforcing factors impacting referral for and uptake of genetic counseling/testing. Predisposing factors included participant’s knowledge, beliefs, and attitudes related to genetic counseling/testing. Both patients and providers also cited that insurance coverage and out-of-pocket cost are major concerns for ovarian cancer patients considering genetic testing. Finally, both patients and providers emphasized that genetic counseling/testing would provide additional information to an ovarian cancer patient. While providers emphasized that genetic testing results were useful for informing a patient’s personal treatment plan, patients emphasized that this knowledge would be beneficial for their family members.

Conclusion

Barriers to genetic testing for ovarian cancer patients exist at multiple levels, including the patient (e.g., knowledge, attitudes), the provider (e.g., workload, availability of services), the institution (e.g., difficulty with referrals/scheduling), and the healthcare system (e.g., insurance/cost). Interventions aiming to increase genetic testing among ovarian cancer patients will likely need to target multiple levels of influence. Future quantitative studies are needed to replicate these results. This line of work will inform specific multilevel intervention strategies that are adaptable to different practice settings, ultimately improving guideline concordant care.

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Abbreviations

MD:

Doctor of medicine

APP:

Advanced practice professional

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Availability of data and material

Anonymized data will be made available upon request.

Funding

This work was supported by an institutional grant through the “Miles for Moffitt” program (PIs: Vadaparampil & Wenham), a grant from the National Cancer Institute (T32CA090314, PIs: Brandon & Vadaparampil), and the Collaborative Data Services Core and the Biostatistics Core at Moffitt Cancer Center, an NCI-designated comprehensive cancer center designated and funded in part by a Cancer Center Support Grant (P30CA076292; PI: Cleveland).

Author information

Authors and Affiliations

  1. Department of Gynecologic Oncology, Moffitt Cancer Center, Tampa, FL, USA

    Adrianne R. Mallen & Robert M. Wenham

  2. Department of Obstetrics and Gynecology, University of South Florida, Tampa, FL, USA

    Adrianne R. Mallen

  3. Department of Health Outcomes & Behavior, Moffitt Cancer Center, 12902 Magnolia Drive, MRC-COEE, Tampa, FL, 33612, USA

    Claire C. Conley, Lindsay Fuzzell, Dana Ketcher, Bianca M. Augusto, McKenzie McIntyre & Susan T. Vadaparampil

  4. Department of Oncology, Georgetown University, Washington, DC, USA

    Claire C. Conley

  5. Department of Genetics, Moffitt Cancer Center, Tampa, FL, USA

    Laura V. Barton

  6. Department of Cancer Epidemiology, Moffitt Cancer Center, Tampa, FL, USA

    Mary K. Townsend & Shelley S. Tworoger

  7. Department of Biostatistics and Bioinformatics, Moffitt Cancer Center, Tampa, FL, USA

    Brooke L. Fridley

Authors
  1. Adrianne R. Mallen
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  2. Claire C. Conley
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  3. Lindsay Fuzzell
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  7. Laura V. Barton
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  12. Susan T. Vadaparampil
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Contributions

Adrianne R. Mallen: Conceptualization, interpretation, writing–original draft.

Claire C. Conley: Conceptualization, formal analysis, interpretation, writing–original draft.

Lindsay Fuzzell: Formal analysis, interpretation, writing–review and editing.

Dana Ketcher: Interpretation, writing–review and editing.

Bianca M. Augusto: Data curation, project administration, writing–review and editing.

McKenzie McIntyre: Data curation, project administration, writing–review and editing.

Laura V. Barton: Writing–review and editing.

Mary K. Townsend: Writing–review and editing.

Brooke L. Fridley: Writing–review and editing.

Shelley S. Tworoger: Writing–review and editing.

Robert M. Wenham: Conceptualization, funding acquisition, investigation, methodology and writing–review and editing.

Susan T. Vadaparampil: Conceptualization, funding acquisition, investigation, methodology and writing–review and editing

Corresponding author

Correspondence to Susan T. Vadaparampil.

Ethics declarations

Conflict of interest

Dr. Wenham has participated in data safety monitoring, trial steering, advisory, and speaker activities for which he has received honoraria from Tesaro, Clovis, Genentech, Mersana, Marker Therapeutics, Ovation Diagnostics, AstraZeneca, and Merck. He is also a principal investigator for a number of sponsored clinical trials. Ms. Barton has participated in advisory activities for which she has received honoraria from AstraZeneca and Merck. No other authors have conflicts of interest to disclose.

Ethical approval

This study was performed in line with the principles of the Declaration of Helsinki. All procedures were approved by the Institutional Review Board at the University of South Florida (Protocol #00035939).

Consent to participate

Written informed consent was obtained from all individual participants included in the study.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Adrianne R. Mallen and Claire C. Conley contributed equally to this article and are co-first authors.

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Mallen, A.R., Conley, C.C., Fuzzell, L. et al. “I think that a brief conversation from their provider can go a very long way”: Patient and provider perspectives on barriers and facilitators of genetic testing after ovarian cancer. Support Care Cancer 29, 2663–2677 (2021). https://doi.org/10.1007/s00520-020-05779-1

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