Decision Support in Rural Underserved North Coast Counties

Institution: University of California, San Francisco
Investigator(s): Jeffrey Belkora, Ph.D. - Sara O'Donnell,  - Julie Ohnemus, M.D. -
Award Cycle: 2004 (Cycle 10) Grant #: 10AB-1600 Award: $40,000
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Sociocultural, Behavioral, and Psychological Issues: the human side

This is a collaboration with: 10AB-1601 - 10AB-1602 -

Initial Award Abstract (2004)
Breast cancer patients consult surgeons, oncologists, and radiologists about diagnosis, treatment, and follow-up decisions. In addition to these complex decisions, many patients in Mendocino and Humboldt counties face long travel times and cultural or language barriers, as both counties are designated Medically Underserved (rural) with significant numbers of Latinas (17% and 6%) and Native American Indians (6% and 5%, respectively). Local cancer resource centers have implemented a Consultation Planning (CP) service, delivered in person by staff and volunteers, that since 2001 has helped 141 breast cancer patients prepare their questions before visiting specialists.

The resource centers' goal for 2010 is to offer the CP service to all patients facing breast cancer decisions (estimated at 837/year). In order to achieve this goal, they propose to deliver CP by telephone (tele-CP), to avoid the costs and delays of travel. They ask, "Is tele-CP as effective as in-person CP in reducing patient confusion and distress about decision-making?" Answering this question will require a large scientific (i.e., methodologically sound) study. Before embarking on this study, we want to check whether tele-CP is acceptable to all Mendocino and Humboldt breast cancer patients, including Latinas and Native Americans. If not, we will make changes based on community input until it is.

There are three main parts to this study: first, we will conduct interviews with 12-18 diverse breast cancer survivors, including equal numbers of Native Americans, Latinas, and members of other ethnic groups, to document their reaction to tele-CP and their suggestions for improvement; second, we will test the tele-CP service with 12-18 diverse breast cancer patients facing decisions, and survey them to assess their satisfaction; and third, we will conduct a small-scale rehearsal of a large scientific study to fine-tune our procedures for finding patients, inviting them to join, obtaining their informed consent, assigning them randomly to tele-CP or in-person CP, and collecting and analyzing data.

We believe that our research is the first to explore delivering CP in a rural setting. Also, no research has been published on delivering decision support services such as CP by telephone. Finally, decision support services like tele-CP have not been adapted for the requirements of Native Americans or Latinas. If proven effective, tele-CP could bring decision support to the 837 breast cancer patients facing decisions every year in Mendocino and Humboldt counties and to the 11% of Californians living in rural, underserved communities. Tele-CP could also make decision support more accessible to the 20,000+ Californians of all ethnicities diagnosed with breast cancer every year.

Final Report (2006)
Introduction: This project grew out of the relationship between leaders of two North Coast cancer resource centers (Humboldt Community Breast Health Project and Cancer Resource Centers of Mendocino County) and an academic researcher at the University of California, San Francisco (UCSF). The community resource centers had been implementing, on a small scale, elements of UCSF decision support services including Consultation Planning (CP), a type of visit preparation intervention for patients to use in creating a list of questions for their doctors. The small-scale, exploratory implementations of CP by North Coast resource centers appeared to show great promise for rural, underserved patients.

Topic Addressed: Resource center leaders identified the expansion of CP as a key opportunity and challenge. They wanted to extend the reach of CP into the farthest corners of the county and support the most underserved residents, including Frontier, Latina and Native American breast cancer patients. To this end, in 2003, our project team applied for and was granted a Pilot Award from the California Breast Cancer Research Program to study Decision Support in Rural Underserved North Coast Counties.

Progress toward specific aims: We had three specific aims. 1. Needs Assessment/Requirements Development: Review records; conduct interviews with Native American and Latino community representatives; document the requirements for culturally competent CP; and revise the CP intervention accordingly. 2. Acceptability: Interview and survey Native Americans and Latinas who have dealt with breast cancer issues in the past to determine the acceptability of revised CP. 3. Viability of tele-CP: Review records and interview and survey recent recipients of CPs conducted by telephone to determine whether this was a viable mode of delivery for resource center clients.

Results: We reviewed records for 121 resource center clients, and interviewed and surveyed 15 cultural advisors (9 Native American and 6 Latino/a), 22 breast cancer survivors (including 6 Native Americans and 6 Latinas), and 7 resource center staff. We met a total of 48 times to conduct 15 Requirements interviews, 12 Acceptability interviews, 17 tele-CP interviews, and 4 focus groups with cultural advisors and other stakeholders. In addition, we held 33 internal meetings directly related to this pilot study.

Our record reviews showed that both in-person and tele-CP were associated with high satisfaction (8.67/10, n=67) and decision self-efficacy (39.94/44, n=54) levels among rural, White clients of the resource centers, including breast cancer patients, but that the resource center client base did not include representative proportions of Native American and Latina breast cancer patients. As a result, the resource center sites took steps to strengthen and formalize their relationships with those communities, including the establishment of referral agreements and medical translator training. During the study, we employed these referral agreements and cross-cultural relationships in recruiting and interviewing 15 cultural advisors and 12 Latina and Native American breast cancer survivors, along with 10 past recipients of tele-CP. These key informants unanimously endorsed the concept of visit preparation, and unanimously endorsed our approach (Consultation Planning, average acceptability score = 3.4/4, average satisfaction = 9.4/10), while adding suggestions for improvement. We documented the suggestions for improvement in a CP requirements document.

After reviewing these requirements, the resource center leaders and academic partners specified revisions to the resource center physical infrastructure, processes, techniques, and tools in order to meet the needs stated above. For example, the Cancer Resource Centers of Mendocino County organized a training workshop to certify 25 medical interpreters, and now contracts with Nuestra Casa (a local Latino community agency) to have all CP documents translated. Regarding outreach, the Humboldt Community Breast Health Project continued to recruit members to its Hispanic Outreach Team, and to build its relationship with the Potawot Health Village. Other changes were made to the CP training manual and reference guides (checklists and procedures). For example, during the intake process for Consultation Planning, we specified that CP providers should ask patients if any family members should be specifically included or excluded from the CP process, as a way of surfacing and honoring how patients wished to negotiate the involvement of their family members. New infrastructure specifications include private offices with closed doors for staff or volunteers conducting CP or tele-CP, and a sign indicating that a CP session is in progress. For tele-CP, one process change in response to requests is that whenever possible, CP providers will send to the client a picture of the resource center and its staff and volunteers (with the CP provider circled on the photo) along with other advance materials such as the CP prompt sheet.

Future direction: We have now been funded to compare, in a Full Award, the impact of CP and tele-CP on cost and quality of life outcomes for rural, underserved breast cancer patients in Mendocino County. If this study shows that tele-CP is more cost-effective than in-person CP, we hope to expand our use of tele-CP in Mendocino, and provide technical assistance to other resource centers or agencies wishing to implement this service in their communities.

Impact: If proven cost-effective, our community-driven enhancements to Consultation Planning could help us expand our program delivery from 86 clients in 2003 to the several hundred patients making breast cancer diagnosis, treatment, and follow-up decisions each year in Mendocino County. Our changes to Consultation Planning will ensure that the intervention is better adapted to the needs of Native American and Latina breast cancer patients. Thanks to telephone delivery, Consultation Planning could also be delivered to other rural areas in California, which consists of 11 percent of the population spread over 75 percent of the land mass in California. Finally, Consultation Planning could assist in addressing the 20,000+ annual breast cancer diagnoses in California, whether rural or urban.

Three publications arose from this project:
Belkora J, Edlow B, Aviv C, Sepucha K, Esserman L: Training community resource center and clinic personnel to prompt patients in listing questions for doctors: follow-up interviews about barriers and facilitators to the implementation of Consultation Planning. Implementation Science 2008, 3:6.

Belkora J, Katapodi M, Moore D, Franklin L, Hopper K, Esserman L: Evaluation of a visit preparation intervention implemented in two rural, underserved counties of Northern California. Patient Educ Couns, 2006. 64(1-3): p. 350-9.

Sepucha K, Belkora J: Putting shared decision making to work in breast and prostate cancers: tools for community oncologists. Commun Oncol 2007, 4(11):685-689, 691.

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, Stupar L, O'Donnell S, Loucks A, Moore D, Jupiter C, Johnson N, Wilson L.
Yr: 2012 Vol: 2012 Nbr: 89 (1) Abs: Pg:134-142

Adaptation of consultation planning for Native American and Latina women with breast cancer.
Periodical:Journal of Rural Health
Index Medicus: J Rural Health
Authors: Belkora, J., L. Franklin, S. O'Donnell, J. Ohnemus, and D. Stacey
Yr: 2009 Vol: 25 Nbr: 4 Abs: Pg:384-7