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Involving Patients in the Development and Evaluation of an Educational and Training Experiential Intervention (ETEI) to Improve Muscle Invasive Bladder Cancer Treatment Decision-making and Post-operative Self-care: a Mixed Methods Approach

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Abstract

This study aims to describe the acceptability and feasibility of an educational and training experiential intervention (ETEI) we developed to enhance muscle invasive bladder cancer (MIBC) patients with treatment decision-making and post-operative self-care. Twenty-five patients were randomized to a control group (N = 8) or ETEI group (N = 17). ETEI group participated in a nurse-led session on MIBC education. The control group received diet and nutrition education. Study questionnaires were completed at baseline and at 1-month post-intervention. Our results showed acceptable recruitment (58%) and retention rates (68%). The ETEI group reported increased knowledge (82% vs. 50%), improved decisional support (64% vs. 50%), improved communication (73% vs. 50%), and increased confidence in treatment decisions (73% vs. 50%) compared to the control group. Patients in the control group reported improved diet (50% v. 27%) as well as maintaining a healthy lifestyle (67% vs. 45%) compared to the ETEI group. Patients in the ETEI group reported a significant decrease in cancer worries and increases in self-efficacy beliefs over time compared to the control group. The ETEI was feasible, acceptable, and showed a potential for inducing desired changes in cancer worries and efficacy beliefs.

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Acknowledgements

We would like to thank Mr. Holden Kata for his help in the editing of this manuscript. We would also like to show our gratitude to the participants in this study and the BCAN Survivorship Working Group in providing input on the original version of the intervention materials.

Funding

This study is supported by mentored research scholar grants from the American Cancer Society (121193-MRSG-11-103-01-CPPB) and the National Cancer Institute (1R03CA165768-01A1).

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Authors and Affiliations

  1. Department of Urology and Oncological Sciences, Icahn School of Medicine at Mount Sinai, 1425 Madison Avenue, New York, NY, 10028, USA

    Nihal Mohamed, Tung Ming Leung, Emma K. T. Benn, Reza Mehrazin & John Sfakianos

  2. Albany Medical College, 43 New Scotland Ave., Albany, NY, 12208, USA

    Qainat N. Shah

  3. University of Nevada Reno School of Medicine, 1664 N Virginia St., Reno, NV, 89557, USA

    Sailaja Pisipati

  4. Dana-Farber Cancer Institute, Harvard Cancer Center, 450 Brookline Ave., Boston, MA, 02215, USA

    Donna L Berry

  5. Department of Urology, Ohio State University, 915 Olentangy River Rd., Columbus, OH, 43212, USA

    Cheryl T. Lee

  6. Smith Institute for Urology, 450 Lakeville Road, Lake Success, NY, 11042, USA

    Simon Hall

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  1. Nihal Mohamed
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Correspondence to Nihal Mohamed.

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This study was approved by the Mount Sinai Health System (MSHS) Research Ethics Service. All study protocols (i.e., both qualitative and quantitative study methods) were reviewed and approved by the Institutional Review Board at the Icahn School of Medicine at Mount Sinai.

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The authors declare that they have no conflict of interest.

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Mohamed, N., Leung, T.M., Shah, Q.N. et al. Involving Patients in the Development and Evaluation of an Educational and Training Experiential Intervention (ETEI) to Improve Muscle Invasive Bladder Cancer Treatment Decision-making and Post-operative Self-care: a Mixed Methods Approach. J Canc Educ 35, 808–818 (2020). https://doi.org/10.1007/s13187-019-01534-1

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