Patient Navigation for Cervical Cancer in Kentucky

1. Patient Navigation for Cervical Cancer in Kentucky ACCN Research Roundtable October 8, 2008 Carol R White, MPH Mark Dignan, PhD, MPH Nancy Schoenberg, PhD This project is supported by the National Cancer Institute, CA120606

2. Presentation Objectives • Provide an overview of a new patient navigation program in Appalachia Kentucky • Provide preliminary study findings

3. Introduction • The Patient Navigation Program (PNP) is a five-year, NCI-funded study • The primary goal of the PN is to reduce the disproportionate burden of cervical cancer experienced by rural Appalachian women by increasing adherence to recommended follow-up treatment after abnormal Pap test results • A secondary goal is to explore the utility of using PNs in public health departments to reduce the number of women who are lost to follow-up

4. The project is being implemented in two Area Development Districts, Kentucky River and Lake Cumberland

6. Specific Aims • Improve our understanding of the barriers to follow-up • Recruit, train, and utilize lay health workers works as patient navigators (PNs) in local health departments’ cervical cancer screening and follow-up treatment programs, in collaboration with Nurse Case Managers • Increase the proportion of women who adhere to recommended follow-up, by developing a PNP and using input form women who do not follow-up after abnormal results • Evaluate the efficacy of the PN intervention

7. Phases of the PNP • Phase I • Identify barriers/assets that affect women’s receipt of diagnostic and treatment services for cervical cancer • Phase II • Develop and implement the PNP program (intervention) • Phase III • Conduct program evaluation

8. PNP Activities Local Health Department • Notifying A patient with an abnormal Pap test is notified and asked to come to the health department to learn more about her results • Counseling The Nurse Case Manger counsels the patient and then refers her directly to the PN for study enrollment and follow-up

9. Patient Navigator • Describes the research program; if a patient is interested, the PN enrolls her using an informed consent process • Interviews the patient, administering a baseline interview

10. Develops a specific plan to assist the women in obtaining recommended follow-up including: • Scheduling appointments • Making phone calls or sending reminder letters to the patient about her follow-up appointments • Providing other types of assistance as need to ensure care is obtained

11. Conducts follow-up interviews at 6 and 12 months, assessing the effectiveness of the intervention

12. Key Accomplishments (Jan 2008 to Present) • IRB Approval • UK received IRB approval from Kentucky Cabinet for Health and Family Services and UK • Key Informant Interviews • Completed interviews with key informants to understand barriers/assets to recommended follow-up

13. Patient Navigators Hired • 2 in Kentucky River District Health Department • 2 in Lake Cumberland District Health Department

14. PN Training • Local Health Department Training – to learn standard follow-up procedures for women with abnormal Pap tests and learning patient tracking system • Patient Navigation Training – to learn about other patient navigation programs; training provided Fran Feltner, Director, Kentucky Homeplace

15. Human Subjects Training – to meet UK and state requirements • Resource • UK Training Manual – documents all aspects of the project and includes all study materials

16. Project Implementation • PNs are assigned to one county to recruit/enroll 50 patients; once 50 are enrolled, the PN will move to another county • PNs and UK staff meet weekly to review project activities

17. Preliminary Study Findings Key Informant Interviews • Lead Investigator – Nancy Schoenberg, PhD • Co-Investigator – Shelli Deskins, PhD • Research Assistant – Maria Gomez, MPH

18. Research Design Research Approach • Key informant interviews Sample (N=23) • 7 health department staff and 16 patients from 2 rural counties in Appalachian Kentucky

19. Interviewers • Health psychologist and anthropologist Major Questions Asked • Why don’t women receive follow-up care upon detection of a Pap test abnormality? • What were patients personal experiences with the follow-up process? • What are the roles and characteristics desirable in a Patient Navigator Program?

20. Why Women Don’t Get Follow-Up to Abnormal Pap Tests

21. Why Women Don’t Get Follow-Up to Abnormal Pap Tests

22. Patients’ Personal Experiences with Abnormal Pap Result & Follow-Up Care • History: many abnormalities, procedures • Notification: received calls and letters • Reaction to notification: • Fear • Dr. and family eased fear • Family either encouraged follow-up or discouraged follow-up

23. Treatment experiences: • A lot of back and forth between specialists • Care complicated by pregnancy • Lack of resources challenges care, both personal (lack of health insurance) and community resources (long wait times before you get into Dr’s offices)

24. What Should the Patient Navigation Program Look Like?Characteristics of Navigators

25. What Should the Patient Navigation Program Look Like? Role of Navigators

26. Acknowledgements • PI – Mark Dignan • Co-Investigators • Shelli Deskins • Fran Feltner • Nancy Schoenberg • Brent Shelton • Carol White • Research Assistant • Maria Gomez • Physician Consultants • Chris Desimone • Gilbert Friedell • Kentucky River and Lake Cumberland District Health Department Staff • Lee County Health Department Staff • Perry County Health Department Staff