Background

Patient communication is a critical component of patient care and a significant input into delivering the best outcomes for patients. The published literature is sparse, and, where available, focuses fundamentally on conceptual issues. Specific guidance on the content of patient communication is almost nonexistent.

Approach

Given this background, my colleagues (Diane Zipursky Quale, cofounder and director of the Bladder Cancer Advocacy Network, and Tom Reed, survivor of muscle-invasive bladder cancer and recipient of trimodal therapy) and I were invited to provide clinicians with a checklist that could be used to ensure that the needs of muscle-invasive bladder cancer patients receiving trimodal therapy were properly being met across the lifecycle. We brainstormed components of a checklist and engaged a group of survivors to refine the checklist. Once prepared, we asked a group of well-known radiation oncologists for their input and validation.

The resulting checklist was published in Clinical Oncology¹ and includes these 10 questions:

The final checklist proposes these 10 actions:

1. Ensure adequate time for patients to ask questions and receive answers.
2. Introduce the patient to their entire care team and make sure the team agrees on the proposed treatment plan.
3. Confirm the patient’s understanding of their bladder cancer diagnosis, including stage, grade, and the impact on prognosis.
4. Discuss all treatment options for the stage and grade of patient’s bladder cancer.
5. If the patient is not eligible for one or more of the treatment options, explain why.
6. Explain the risks and benefits of each treatment option, including potential side effects.
7. Describe the patient’s experience during treatment and the potential impact on the daily quality of life both during and after treatment.
8. Explain how you will know when and whether the treatment has worked, including the types and timing of tests that will be required.
9. Describe any long-term impacts of each treatment option, including potential limitations on subsequent treatment alternatives if the initial treatment is not successful.
10. Provide the patient with access to educational and support resources for bladder cancer, including those offered by the Bladder Cancer Advocacy Network, the American Cancer Society, and other advocacy organizations.

Maintenance

A story about the article will be published in AUANews. We continue to seek audiences with clinicians looking to improve the patient experience and who may be willing to either use the checklist or test it as a tool with clinical staff. We believe that this list has application well beyond trimodal therapy recipients.

Quality of Life

Our multidisciplinary stakeholder team believes that this list will drive informed decisions; reduce some of the stress associated with bladder cancer diagnosis, treatment, and surveillance; and deliver better outcomes in this and potentially other contexts.