Telephone-Based Decision Support for Rural Patients

Institution: Mendocino Cancer Resource Center
Investigator(s): Sara O'Donnell,  - Jeffrey Belkora, Ph.D. -
Award Cycle: 2006 (Cycle 12) Grant #: 12BB-3901 Award: $361,358
Award Type: CRC Full Research Award
Research Priorities
Community Impact of Breast Cancer>Health Policy and Health Services: better serving women's needs

This is a collaboration with: 12BB-3900 -

Initial Award Abstract (2006)
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 patientís 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 doctorís 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 projectís 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.

Final Report (2011)

Our academic community partnership is studying the provision of decision support and patient education in Mendocino, a rural community in Northern California. The Cancer Resource Centers of Mendocino County (CRCMC) previously implemented Consultation Planning (CP), a form of question-coaching in this rural, underserved setting. CP was associated with patient decision self-efficacy (DSE) when delivered by trained staff, face-to-face, with patients. In this study, we collaborated to see if we can expand CP with delivery by telephone. We asked:

  1. Is Tele-CP as effective as in-person CP in terms of patient decision self-efficacy?
  2. Can Tele-CP be delivered at a lower cost than in-person CP?


To answer these questions, we randomly assigned women with a diagnosis of breast cancer to receive tele-CP or in-person CP, and compared ratings of decision self-efficacy (DSE). DSE is an 11-item survey that measures a patientís confidence in her ability to navigate decisions effectively with physicians. Items are averaged resulting in DSE scores that range from 0 (min) to 4 (max). Higher scores reflect higher decisional self-efficacy. For cost analysis we collected labor and other costs associated with delivering the CP, as well as training costs and resource center overhead. While CP is offered free of charge to resource center clients, we asked participants to indicate perceived value on a willingness to pay survey. We also measured patient satisfaction, anxiety and preparation for decision making. To add depth to our findings, we asked the participants to comment on what worked well or didnít work well about getting CP in person or by telephone.† Our results are summarized below.

Between October 2007 and December 2010, we screened 269 resource center clients, 113 of whom were eligible. Of these, 74 consented to participate in the study and were randomized. Of those, 33 were randomized to in-person CP and 41 were randomized to tele-CP. We created an analytic data set that included 67 participants (32 participants who received in-person CP and 35 participants who received tele-CP). Reasons for consenters not being included in analysis were: did not follow through with in-person intervention appointment (1), did not follow through with telephone appointment (1), withdrew from study after being randomized to telephone (3), did not have an upcoming doctor appointment (1), withdrawn by PI due to cognitive issues preventing completion of surveys and intervention (1).

Average DSE score for Tele-CP recipients was 3.53 compared to 3.44 for in-person. Our statistical analysis indicated that tele-CP was not inferior to in-person. For both groups, the average DSE increased significantly when measured before and after the CP. Anxiety decreased in both groups and participants in both interventions reported high and similar levels of satisfaction and preparation for decision making. The resource centerís average costs were $40 for tele-CP and $59 for in person. Patientsí willingness to pay averaged $154 for tele-CP and $144 for in-person. In qualitative data, participants emphasized the convenience associated with tele-CP and the nurturing associated with in-person CP.

We concluded that organizations offering CP can deliver it by telephone when convenient, as tele-CP costs no more, works as well and is equally valued by clients compared to in-person CP. Our study illustrates how community-based participatory research can produce rigorous, relevant research.

We will continue disseminating our findings and exploring ways to expand the reach and adoption of Consultation Planning with local and national organizations. We are currently conducting a study to develop community-endorsed policies and procedures for the safe, legal, private and effective storing and sharing of the documents and products that are created as part of CRCMCís decision support interventions.

Decision Support by Telephone: Randomized Controlled Trial in a Rural Community Setting
Periodical:Patient Education and Counseling
Index Medicus: Patient Educ Couns
Authors: Belkora, J., L. Stupar, S. O'Donnell, A. Loucks, C. Jupiter, N. Johnson, and L. Wilson
Yr: 2012 Vol: 89 Nbr: Abs: Pg:134-142