Development and Pilot Testing of the Interactive Prostate Cancer Information, Communication, and Support Program (iPICS)

Over 3.1 million men in the U.S., including over 200,000 Veterans, have been diagnosed with prostate cancer. While there are a variety of effective treatment options for prostate cancer, each type of treatment can be associated with negative short- and long-term impacts that can diminish patients' quality of life (QOL). These impacts are often more severe than the patient understood at the time of deciding on a treatment option, leading to decision regrets and further decreased QOL.

Existing programs for informing patients with localized prostate cancer about the impacts of various treatment options and assisting them during the recovery period are fragmented and limited. In particular, such programs often focus either only on supporting patient decision-making prior to treatment or only on supporting patients during and after treatment. Because these programs do not support the patient before, during, and after treatment, prostate cancer patients often have unmet information needs concerning their diagnosis, different treatment options and their short and long-term effects, and lifelong survivorship issues that extend beyond their initial treatment. In addition, existing decision aids and survivorship programs are mostly offered in-person or by telephone, and they therefore lack both the potential reach and the information and support personalization capabilities of technology-based tools. Of the few technology-based tools that do exist, most provide generic information that is not updated based on current scientific evidence and lack personalization based on individuals' needs and their literacy levels.

To fill these gaps in clinical practice and research, we propose a theory-based, integrated information and supportive care system, the interactive Prostate Cancer Information, Communication and Support program (iPICS), to provide tailored and personalized information about localized prostate cancer, treatment options, and their short- and long-term effects before, during, and after treatment. The proposed research has two aims: (1) to design and develop a three-part eHealth system using a user-centered design approach and (2) to evaluate the feasibility and usability of the use of the system for patients with localized prostate cancer in a pilot study. iPICS will include three subsystems integrated into a single platform: iPICS-Inform, designed to integrate current and reliable publicly available information with existing educational materials and personalize users' engagement with that information based on their preferences and literacy levels; iPICS-Dialog, designed to keep records of patient-provider communication (both face-to-face and through secure messaging) and allow patients to easily search and understand the information provided by their doctors; and iPICS-SNAP, a forum for patients who use iPICS and their caregivers to engage with one another and share information, as well as communicating with professional providers.

iPICS is designed to positively impact quality of life for patients diagnosed with localized prostate cancer, regardless of their health literacy or educational background, by tailoring and personalizing information and support to the individual patient. In addition, caregivers of prostate cancer patients will benefit from the information support and social support provided by iPICS. Veterans, military members, and Black men with prostate cancer will be especially sought out for participation in the study to ensure that iPICS' final design will help improve the quality of life for these patients and their family caregivers. The ultimate goal of the study is to develop a system and process that can be widely adopted in clinical settings, potentially benefitting many prostate cancer patients, caregivers, and health care providers beyond those participating in the study.