D eveloping C ancer N avigation S upport for R ural A frican A merican E lders J ennifer W enzel, PhD, RN, CCM* Rachel Klimmek, RN* *Johns Hopkins University, School of Nursing

Funsho Akerele-Ale, 2001 Leonard Evans 2001 Devin Elmore: “Harbor Dock”, December 31, 2005 Milbert O. Brown, Jr 2001 Michael Bracy 2001 Kenneth Muhammed 2001

P urpose To test a culturally appropriate patient navigation intervention designed to provide support for rural AAs undergoing cancer treatment. To test a culturally appropriate patient navigation intervention designed to provide support for rural AAs undergoing cancer treatment. To assess treatment completion, stress, and economic and social outcomes among rural AA elderly cancer patients randomized to one of two groups (immediate intervention or waitlist control). To assess treatment completion, stress, and economic and social outcomes among rural AA elderly cancer patients randomized to one of two groups (immediate intervention or waitlist control). & Family in Cityscape Charles Alston, 1966 Voting Charles Moore, 1964

M ethods We will recruit 80 Medicare-enrolled AA patients residing in rural Virginia with a recent diagnosis (<60 days) of breast or prostate cancer who require & intend to pursue cancer treatment. We will recruit 80 Medicare-enrolled AA patients residing in rural Virginia with a recent diagnosis (<60 days) of breast or prostate cancer who require & intend to pursue cancer treatment. Inclusion criteria: Inclusion criteria: self-identify as AA self-identify as AA residing in a rural county residing in a rural county 65 years of age or older 65 years of age or older newly diagnosed (<60 days) with eligible cancer (prostate or breast, histologically staged 0-III) newly diagnosed (<60 days) with eligible cancer (prostate or breast, histologically staged 0-III) scheduled to receive surgery, chemotherapy, or radiation therapy as initial treatment scheduled to receive surgery, chemotherapy, or radiation therapy as initial treatment Exclusion criteria: Exclusion criteria: metastatic disease or concurrent cognitive problems/disabilities that would limit ability to participate metastatic disease or concurrent cognitive problems/disabilities that would limit ability to participate inability to identify a support person willing to participate in the intervention at study entry inability to identify a support person willing to participate in the intervention at study entry Karnofsky score <80 Karnofsky score <80

Goals of CPN Our goal is to facilitate timely access to cancer care in a culturally appropriate manner by: 1) overcoming health system barriers, 1) overcoming health system barriers, 2) providing health education about cancer across the cancer continuum from prevention to treatment, 2) providing health education about cancer across the cancer continuum from prevention to treatment, 3) addressing patient barriers to cancer care, and 3) addressing patient barriers to cancer care, and 4) providing psychosocial support. 4) providing psychosocial support.

CPN Services Services may include but are not limited to: (1) arranging various forms of financial support, (1) arranging various forms of financial support, (2) arranging transportation to and from childcare during scheduled diagnosis and treatment appointments, (2) arranging transportation to and from childcare during scheduled diagnosis and treatment appointments, (3) identifying and scheduling appointments with caregivers, (3) identifying and scheduling appointments with caregivers, (4) coordinating care among providers, (4) coordinating care among providers, (5) addressing health literacy needs, (5) addressing health literacy needs, (6) ensuring coordination of services among health care personnel, (6) ensuring coordination of services among health care personnel, (7) ensuring that pertinent health records are available at scheduled appointments, (7) ensuring that pertinent health records are available at scheduled appointments, (8) providing other services to overcome access barriers encountered during the cancer care process. (8) providing other services to overcome access barriers encountered during the cancer care process.

CPN Protocol Components Cancer Knowledge/Needs; Ability to Navigate Cancer Treatment Address cultural beliefs/myths about cancer Address cultural beliefs/myths about cancer Review needs/expectations/goals regarding the following: Review needs/expectations/goals regarding the following: -Potential stigma regarding diagnosis -Potential stigma regarding diagnosis -Prognosis -Prognosis -Treatment strategies/minimization of related side effects -Treatment strategies/minimization of related side effects -Follow-up -Follow-up Assess knowledge needs of participant/support individual; build educational plan Assess knowledge needs of participant/support individual; build educational plan

CPN Protocol Components Support and Access to Cancer Care Train identified support person(s) to assist in providing support through treatment Train identified support person(s) to assist in providing support through treatment Incorporate designated support person into desired treatment monitoring/navigation (derived from Study 4 data, Table 1) Incorporate designated support person into desired treatment monitoring/navigation (derived from Study 4 data, Table 1) Review transportation, care coordination plans (appointments, scheduling, etc.) Review transportation, care coordination plans (appointments, scheduling, etc.)

CPN Protocol Components Patient-Provider Communication Acknowledge cultural issues regarding communication/health literacy Acknowledge cultural issues regarding communication/health literacy Discuss resource needs Discuss resource needs Review effective strategies to facilitate better communications with care providers (e.g., commonly used cultural terms, documenting questions in advance of visits) Review effective strategies to facilitate better communications with care providers (e.g., commonly used cultural terms, documenting questions in advance of visits)

CPN Protocol Components Finances Acknowledge/discuss potential stress associated with cancer- related costs Acknowledge/discuss potential stress associated with cancer- related costs Discuss priorities related to finances; personal plans Discuss priorities related to finances; personal plans Provide culturally appropriate resources/strategies and other information to assist in controlling/decreasing cancer-related costs (i.e., transportation, medications) Provide culturally appropriate resources/strategies and other information to assist in controlling/decreasing cancer-related costs (i.e., transportation, medications)

Questions? Cultural tailoring will be applied to the intervention to increase its relevance to this rural population of AA Seniors Cultural tailoring will be applied to the intervention to increase its relevance to this rural population of AA Seniors The Builders, 1974 Jacob Lawrence