patient navigation for cervical cancer in kentucky accn research roundtable october 8, 2008 carol r...
TRANSCRIPT
Patient Navigation for Cervical Cancer in Kentucky
ACCN Research Roundtable October 8, 2008
Carol R White, MPHMark Dignan, PhD, MPHNancy Schoenberg, PhD
This project is supported by the National Cancer Institute, CA120606
Presentation Objectives Provide an overview of a new patient
navigation program in Appalachia Kentucky
Provide preliminary study findings
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
The project is being implemented in two Area Development Districts, Kentucky River and Lake Cumberland
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
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
PNP Activities
Local Health Department
Notifying A patient with an abnormal Pap test is notifiedand asked to come to the health department
tolearn more about her results
CounselingThe Nurse Case Manger counsels the patient and then refers her directly to the PN for study enrollment and follow-up
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
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
Conducts follow-up interviews at 6 and 12 months, assessing the effectiveness of the intervention
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
Patient Navigators Hired
2 in Kentucky River District Health Department
2 in Lake Cumberland District Health Department
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
Human Subjects Training – to meet UK and state requirements
Resource UK Training Manual – documents all aspects
of the project and includes all study materials
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
Preliminary Study Findings
Key Informant Interviews Lead Investigator – Nancy Schoenberg, PhD Co-Investigator – Shelli Deskins, PhD Research Assistant – Maria Gomez, MPH
Research Design
Research Approach Key informant interviews
Sample (N=23) 7 health department staff and 16
patients from 2 rural counties in Appalachian Kentucky
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?
Why Women Don’t Get Follow-Up to Abnormal Pap Tests
Health Department Staff Patients
Logistics/Resources
Transportation; finances; lack of availability of physicians; distances/proximity of care; clinic hours and appointment availability; lack of health insurance; childcare availability; economic—SES; and difficulty contacting patients for follow-up
No transportation; lack of availability of healthcare provider; scheduling conflicts with childcare, work, etc.; financial problems; lack of insurance
Patient Factors
Patient demographics (generational issues: socioeconomic status, patient level of education); language/communication issues; psychosocial/emotional issues
Psychological/emotional (fear, denial, shy, guilt); lack of perceived need; lack of social support; stress/too much going on
Why Women Don’t Get Follow-Up to Abnormal Pap Tests
Health Department Staff Patients
Cultural IssuesPrevention and early detection not a priority; increasing migrant and Hispanic population and shortage of interpreters; healthcare providers don’t always understand culture; family culture influences follow-up
Procedure characteristicsHassle, time consuming, uncomfortable, stressful
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
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)
What Should the Patient Navigation Program Look Like?Characteristics of Navigators
Health Department Staff Patients
Psychosocial characteristicsadventurous, tenacious, “people person”
Expertisehas life experience, is educated, knows what to do
Communications skills effective/persuasive communicator, Spanish speaker
Communications skills/personalityfriendly, easy to talk with, nice
Special skills knowledgeable about follow up procedures, computer literate
Special skillsdependable, ensures confidentiality, has experience with abnormals herself
Personal characteristicsfemale, resident of area
Personal characteristics female, resident of area, mom like or younger
What Should the Patient Navigation Program Look Like? Role of Navigators
Health Department Staff Patients Conduct home visits
Provide patient education
Provide emotional support and encouragement
Facilitate logistics of follow up care, including arranging transportation, making physician appointments, finding childcare
Interact effectively with health department workers, nurses, physicians, patients
Help with logistical tasks: assist with forms, paperwork; arrange transportation; help make appointments; provide reminders of appointments
Support and encouragement: goes to homes, appointments if needed; makes phone calls; and sends letters of encouragement
Provide education: importance of follow-up, treatment and testing procedures; inform patients of risks
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