Personalizing Kidney Cancer Communication to Support Patient-Centered Decision Making
Abstract
In 2020, most patients diagnosed with kidney cancer will have early-stage disease. While these so-called small renal masses carry a good prognosis, patients face a difficult decision. These cancers are highly curable with surgery or treatment with thermal energy. Yet, patients may also do well with observation without the risks of treatment-related death, pain, injury, and long-term kidney disease. This generates uncertainty and conflict, which can make for a more difficult and potentially unsatisfying decision-making experience. In this setting, decision support could be helpful. Decision support [is a set of ] tools that identify specific needs of patients and provide relevant resources to help patients and families make decisions that are informed and consistent with their priorities. However, decision support tools have produced mixed results and often fail to adjust to how patients want [to receive] their information. In the field of health communication, how information is delivered impacts how engaged patients feel, how they process information, and their overall satisfaction. For example, patients who are worried or fearful may benefit from more empathy while those who simply want a lot of information may prefer complete, numeric information upfront. Therefore, our objective is to improve the decision-making experience by personalizing how patients receive information about their possible kidney cancer. We hypothesize that personalized communication responsive to the specific communication and support needs of patients will improve the perceived quality of communication, thus improving the decision-making experience. Combining expertise in kidney cancer, health communication, and decision-making research, our team will use both direct patient input (qualitative) and numeric data (quantitative) to define, build, and test personalized communication for patients with early-stage kidney cancer. Through patient interviews, we will first aim to understand how different types of patients may want to receive their information differently. With patients and caregivers on the design team, we will then build a communication matrix that links specific needs to different wording and visuals. We will then pilot-test this among patients recently treated for early-stage kidney cancer in North Carolina to get their feedback on how useful, relevant, informative, and supportive they found the personalized communication to be. Overall, this proposal addresses two Kidney Cancer Research Program areas of emphasis. First, it aims to improve the Survivorship and Patient Experience by optimizing decision-making. Second, it seeks to ensure broad scalability through an Outcome/Population-based Design. Once complete, this study will provide new and important knowledge on how we can help active-duty members, their families, Veterans, and the general public better understand their kidney cancer diagnosis and the options they can choose for early-stage disease. If successful, this approach will help patients feel engaged, supported, and informed, so they can pick the option that best suits their priorities and values with as little as possible distress or regret. In turn, this may help prevent avoidable delays in treatment or unwanted surgery, leading to improved health outcomes and a better overall experience. We anticipate that our study findings can be quickly turned into a decision support tool that can undergo formal testing on clinical and behavioral outcomes. If the positive effects are confirmed, we will work to ensure timely dissemination, so patients can benefit immediately. Additionally, we will adapt this framework to other decisions in kidney cancer, such as the role of surgery for metastatic disease and the understanding of toxicity with targeted and immunotherapy. In so doing, we can transform the decision-making experience for patients across the kidney cancer continuum. This research proposal has
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Dec 05, 2021
- Source ID
- W81XWH2110775
Entities
People
- Hung-jui Tan
Organizations
- United States Army
- University of North Carolina at Chapel Hill