Telephone-Based Decision Support for Rural Patients
Creators: name: University Of California Office Of The President
Publisher: name: University of California Office of the President
publisherIdentifier: https://ror.org/00dmfq477
publisherIdentifierScheme: ROR
Year: 2024

description: Introduction to the research topics: Breast cancer patients are often advised to write down a list of questions before talking to their surgeons or oncologists about treatment decisions. However, without support, newly diagnosed patients may be too overwhelmed to make a list of their questions. Over the last 30 years, studies have shown that patients benefit from having a researcher or nurse prompt them for questions before an upcoming appointment. In some of these studies, the researcher or nurse then wrote down the patient questions so that the doctor could be sure to address them. The studies have not been translated into practice. Today, few facilities are providing this support, known as visit preparation, perhaps because of the cost or organizational challenges. Our team, a partnership between a rural community resource center and a university research group, has implemented a form of visit preparation known as Consultation Planning (CP). We have made CP work in our communities by training resource center staff to deliver the service in face-to-face interviews with patients. We now wish to expand CP for delivery to more diverse patients, including Native American, Latina and Frontier (extremely rural) residents. We also would like to deliver it by telephone (tele-CP), since this might be less costly and more convenient for all parties. We have collected initial data suggesting that CP is appropriate for diverse patients (including Native Americans and Latinas), and may still be effective when delivered by telephone. We are thus proposing a bigger, more detailed study to evaluate the effectiveness of delivering CP by telephone versus in person, and explore the costs to the patient and resource center.
 
 
 
 
 
 
 
 Central research hypotheses: We ask whether tele-CP is as effective as in-person CP in improving a patient’s confidence in her ability to participate in decision-making with her doctor. We question whether tele-CP saves the patient and resource center time or money compared to in-person CP. We will also track other outcomes such as quality of life and follow-through with appointments and treatments.
 
 
 
 
 
 
 
 General methodology: We will invite all 90 Mendocino patients diagnosed every year with new or locally recurrent breast cancer to join our study. We need 144 over a three-year period in order to make our study scientifically valid. Patients that agree to join our study will be assigned (through a process similar to a coin flip) to tele-CP or in-person CP. A resource center staff member will use the assigned method to help the patients prepare a list of questions for their surgeon or oncologist. Before and after the CP session and their doctor’s appointment, patients will fill out short surveys describing their confidence, anxiety, confusion, quality of life, and costs to them of doing the CP session (e.g., travel time). From these surveys, as well as other records, we will determine whether tele-CP was as good as in-person CP, and whether it was more convenient or less costly.
 
 
 
 
 
 
 
 Innovative elements of the project: The proposed study is unique in a number of ways. It is the first study of whether non-researchers (resource center staff) can perform visit preparation in a way that improves patient participation, decision making, quality of life, and other outcomes. It is the first study of whether visit preparation can be delivered by telephone. And it is the first study of visit preparation among underserved, rural, diverse patients including Latinas and Native Americans.
 
 
 
 
 
 
 
 Community Involvement: Our resource center is in its 10th year of service to the residents of Mendocino County. It is supported entirely by grants and donations, and served 546 new clients in 2005, of which 65 were breast cancer patients. As a result of our Pilot Study, we are formalizing referral agreements with other community health agencies (including Nuestra Casa and Consolidated Tribal Health), all six primary care clinics in the County, both medical oncologists, and the only general surgeon who specializes exclusively in breast cancer. Representatives from these partners, along with patient representatives, make up our project’s 27-member community advisory board. Our advisors have guided the design of this study based on our pilot study featuring 37 interviews and 121 survey responses. We also convened a community feedback session in January 2006 attended by 14 providers, 11 agency representatives, 10 breast cancer survivors, 6 community health leaders, and 2 pilot study subjects. Thanks to this community input, we took pains to formulate a study in which every participant will get a supportive intervention. We have also budgeted for the resources necessary to invite all eligible Mendocino residents to participate in our study, including all Native American, Latina, and Frontier (extremely rural) breast cancer patients.