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