Prostate Cancer Navigation

Prostate Cancer Nurse Navigator:Prostate Cancer Nurse Navigator:Tools for Your Practice & Program Tools for Your Practice & Program

Frank delaRama, RN, MSN, AOCNSPalo Alto Medical Foundation

Palo Alto Medical Foundation Palo Alto Medical Foundation (PAMF) Prostate Cancer Care(PAMF) Prostate Cancer Care

Today’s TopicsToday’s Topics

• Program Development and Maintenance• Prostate Cancer Navigation– Shared Decision Making

• What issues/questions do you want to tackle today?

Program Development and Program Development and MaintenanceMaintenance

• Learning from the PAMF Experience…

Program Development Program Development and the Navigator Roleand the Navigator Role

• 1990s: Urology-Oncology Rounds– Mainly physician representation– Urology, radiation oncology, pathology– Retrospective cases

• Early 2000s: Developing a Navigator– RN Radiation Oncology• Coordinating rounds• Arranging consults and tests

Program Development Program Development and the Navigator Role (cont.)and the Navigator Role (cont.)

• 2004: Prostate Cancer Nurse Navigator (PCNN)– Hired additional radiation oncology RNs, so PCNN

could dedicate majority of time to prostate cancer patients

– Involvement in clinic-wide quality improvement (QI) committees: Patient-Focused Cancer Care Committee• Site visits• Focus groups• Staff education– Prostate Cancer Survivor Panels– Similar Community Education event

Program Development Program Development and the Navigator Role (cont.)and the Navigator Role (cont.)

• 2004: Shared Decision Making in Prostate Cancer– Multi-site study– Prostate Cancer Resource Notebook– Grant writing– Study aim to explore the value of the PCNN/SDM

Intervention and patient satisfaction with treatment decision vs usual care

Program Development Program Development and the Navigator Role (cont.)and the Navigator Role (cont.)

• 2006: Cancer Care Clinic– Physical space at PAMF– Plan to host multispecialty clinics– Navigator offices there (breast and prostate)

Program Development Program Development and the Navigator Role (cont.)and the Navigator Role (cont.)

• 2006 to present: Prostate Cancer Care Program blossoms…– Prostate Cancer Survivor video– PCNN study funded– PAMF Outcomes Measures Project

• Electronic medical record/information technology

• Quality-of-life (QOL) surveys• Retrospective data collection

– Buddy Program– ACCC article– Hosting multispecialty clinics for non-PAMF

patients– Cancer Patient Advisory Council

Fundamental Themes for PCNN Fundamental Themes for PCNN Development and MaintenanceDevelopment and Maintenance

• Helping physicians/healthcare professionals• Helping patients in treatment decisions• Helping population: prostate cancer• Outcome measurement• Patients giving back…

Shared Decision-Making Case Shared Decision-Making Case StudiesStudies

Active Participation of the Prostate Cancer Nurse Navigator…

Step by Step

Shared Decision-MakingShared Decision-MakingNurse Navigator Intervention StudyNurse Navigator Intervention Study

• Prostate Cancer Resource Binder• Shared Decision-Making Worksheet– Both available online at:

www.pamf.org/prostate/

TOCTOC

SDM Worksheet: Prioritizing Goals for SDM Worksheet: Prioritizing Goals for Treatment and OutcomesTreatment and Outcomes

Worksheet #1: Priorities

Step 1: Where do I start? A. My risk group is:

Low - PSA < 10, Gleason score is < 6, stage is T1 or T2a. Intermediate - PSA 10 - 20, Gleason score = 7, stage T2b or >50 percent of their

biopsies showing disease. High - PSA > 20, Gleason score is 8 - 10, or stage T3 or T4.

B. My doctor-recommended treatment options are: Low Risk of Recurrence

Watchful waiting Surgery Radiation

External beam Brachytherapy

Intermediate Risk of Recurrence

Watchful waiting Radiation

External beam Brachytherapy

Surgery High Risk of Recurrence

Hormonal therapy plus radiation Surgery and radiation

C. Other treatment options I want to explore are:

Step 2: Identifying my goals (Rank your goals, “1” being the most important) C. My Prostate Cancer Goals Are: Avoiding Side Effects

Vignette 1: Age 73 (Low Risk; T2a, Gleason = 6) "The thought of being incontinent or needing a diaper depressed me … the options were surgery or radiation, and I thought proton therapy might reduce the possible side effects … and I have been extremely satisfied.”

Case Study 1Case Study 1

(A.N.)

Case Study 1Case Study 1

• 77-year-old retired teacher and coach• “Extremely healthy, active”• 2005 biopsy = benign; 2006 biopsy = PIN; 2010

biopsy = Gleason 3+4 (2/10 cores)• Prostate-specific antigen (PSA) 9.48• 81 cc prostate; on Proscar already to reduce

volume

Case Study 1Case Study 1

• Consults: Uro, RadOnc, Brachy• Interested in brachy, but…– Prostate size– Potency his main priority– Extensive travel schedule

SDM 1SDM 1

• Priorities– Avoiding erectile dysfunction (ED)– Maintaining QOL

• Decision

Case Study 2Case Study 2

(R.D.)

Case Study 2Case Study 2

• 57-year-old male• PSA 5.4, T1cNxM0• Gleason 3+3, 2% submitted tissue, aggregate

linear dimension 0.6• Minimal urinary and ED symptoms• Computer engineer

SDM 2• Two scenarios

1) Priorities for a man selecting active surveillance • Maintaining QOL• Avoiding long-term side effects

2) Priorities for a man selecting radiation or surgery vs active surveillance • Getting the cancer out/gone• Avoiding long-term side effects

• Decision -

Case Study 3Case Study 3

Case Study 3Case Study 3

• 57-year-old male• T1c, Gleason 3+4 (5/12 cores)• PSA 1.1, 1.4, 3.0 (over about 2 years)• Occupation: sales/requires >50% travel

SDM 3

• Debating b/w surgery and radiation• Priorities:– Getting the cancer out/gone– Avoiding urinary side effects– Convenience of treatment (how fits into life)

• Decision -

Case Study 4Case Study 4

(R.D.)

Case Study 4Case Study 4

• 52-year-old computer engineer• Very active, golfs with wife (favorite activity)• PSA 4.5• T1c, Gleason 3+4 in 15% tissue• 34 cc prostate

SDM 4

• Debating b/w surgery and radiation• Priorities:– Getting the cancer out/gone– Avoiding urinary side effects– Convenience of treatment (how fits into life)

• Decision -

Case Study 5Case Study 5

Case Study 5Case Study 5

• 60-year-old male• Midlevel manager – biotech• T1c, Gleason 3+3, 6/12 cores• Good surgical candidate• Brother also had prostate cancer

SDM 5SDM 5

• Strongly leaning toward radiation• Priorities:– Getting the cancer out/gone– Avoiding ED

• Decision -

Prostate Cancer NavigatorProstate Cancer Navigator

• Mission The mission of AONN is to advance the role of patient navigation in cancer care and survivorship planning by providing a network for collaboration and development of best practices for the improvement of patient access to care and quality of life.

Vision The vision of AONN is to increase the role of and access to oncology nurse and patient navigators, so that all cancer patients may benefit from their guidance, insight, and personal advocacy.

Prostate Cancer NavigatorProstate Cancer Navigator

• In prostate cancer, the nurse navigator plays an important role throughout the cancer care continuum, from screening/diagnosis, through treatment, and into survivorship

• Serves as a valuable resource to patients, providers, and prostate cancer population in general

Prostate Cancer NavigatorProstate Cancer Navigator

• Advocate• Teacher• Counselor• Nurse

Thank You!Thank You!

• Questions?• Comments?

Selected ResourcesSelected Resources

www.nccn.org www.mskcc.org www.pcf.org www.cancer.net

delaramaf@pamf.org www.pamf.org/prostate Twitter: fdelaramaBlog for Sutter Health My Life Stages: http://bit.ly/pkPFDXFacebook: Frank delaRama

Selected ResourcesSelected Resources

• PAMF Prostate Cancer Resource Notebook /SDM Worksheethttp://www.pamf.org/prostate/resources/binder.html

• ACCC Oncology Issues, Sept/Oct 2009Developing a Multispecialty Prostate Cancer Clinic

• ACCC Guide to Best Practices in a Comprehensive Prostate Cancer Programhttp://www.accc-cancer.org/publications/

SUPPLEMENTAL SLIDESSUPPLEMENTAL SLIDES

Useful notes/resources for the Prostate Cancer Nurse Navigator

SDM Study GoalsSDM Study Goals

• Reducing decisional conflict • Decreasing the time between diagnosis and a

treatment decision • Improving adjustment to treatment outcomes • Increasing satisfaction with overall care and

with the treatment decision process• Reducing healthcare resource utilization

during the decision period• Improving QOL

PCNN SDM Study: PearlsPCNN SDM Study: Pearls

• Qualitative differences, men vs women, in how they handle a new cancer diagnosis– Men: internalize, research, analyze– Women: externalize, search support, psychosocial

• Value of the navigator, as expressed by survivors (more time with PCNN, the better)

PCNN SDM Study: PearlsPCNN SDM Study: Pearls

• Value of the shared experience, once the men opened up (surprised to find out who also had prostate cancer, and how willing to share stories)

• Early feedback – satisfaction with treatment decision + PCNN intervention (vs ‘woulda/coulda/shoulda’!)

• Consider potential downstream financial benefits of PCNN– Minimize outmigration– More encounters in the PAMF system

(primary care, specialty care, lab/imaging)

Multispecialty Clinic: PearlsMultispecialty Clinic: Pearls

• Initial consult time in MSC similar to traditional consults, but less MD visits prior to treatment decision making

• 3 providers MAXIMUM, before information and time overload

• Rapid succession of one-on-one visits vs panel-type visit

• Traditional visits (over several days) work better for some

Fundamental Themes for PCNN Fundamental Themes for PCNN Development and MaintenanceDevelopment and Maintenance

• Helping physicians/healthcare providers• Helping patients in treatment decisions• Helping population: prostate cancer• Outcome measurement• Patients giving back…

Fundamental Themes for PCNN Fundamental Themes for PCNN Development and MaintenanceDevelopment and Maintenance

What’s the problem?

How can the PCNN bring value?

Physicians/Healthcare ProvidersPhysicians/Healthcare Providers

• Problems:– MD tracking of positive biopsies– Arranging appointments, potentially over several

departments or even facilities

Navigator – Solutions/Navigator – Solutions/Value-Added ServicesValue-Added Services

• One point of contact• Arrange appointments (consults/tests)

• Focus during early program development– Opportunities to

demonstrate simple value-added services/gain confidence

Patients and Treatment DecisionsPatients and Treatment Decisions

• Problems:– Multiple “equal treatment options”– The “Male Patient”• Subthemes: engineers, stewers, couple dynamics

Navigator – Solutions/ Navigator – Solutions/ Value-Added ServicesValue-Added Services

• Identifying vetted resources (Internet, paper, nomograms)

• Shared decision-making interventions• “One person to call”• Unbiased third party

Prostate Cancer PopulationProstate Cancer Population

• Problems:– Screening controversies– Many options/treatment technologies– Outcome measures, or lack thereof…

Navigator – Solutions/Navigator – Solutions/ Value-Added Services Value-Added Services

• Outcome measures• Chart reviews/aggregated reports/ outmigration/$$$

reports• Community education events/speaking opportunities• PCNN perspective on technology, plus QOL• Research grants• Philanthropic opportunities

Giving BackGiving Back

• Survivors helping the navigator!– Prostate Cancer Survivor video/panel

presentations– Recruiting buddies/shared experience– Patient Advisory Boards/committee

representation– Philanthropy

Linchpin: Are You Indispensable?Linchpin: Are You Indispensable?

www.sethgodin.com

BONUS MATERIALBONUS MATERIAL

• Oncology Nurse Navigator as a “LINCHPIN”

Becoming a LinchpinBecoming a Linchpin

• “The linchpin is an individual who can walk into chaos and create order, someone who can invent, connect, create, and make things happen. Every worthwhile institution has indispensable people who make differences like these.”

There Is No MapThere Is No Map

• “Indispensible linchpins are not waiting for instructions, but instead, figuring out what to do next. If you have a job where someone tells you what to do next, you’ve just given up the chance to create value.”

The Culture of Connection The Culture of Connection

• “Linchpins don’t work in a vacuum. Your personality and attitude are more important than the actual work product you create, because indispensable work is work that is connected to others.”

The Seven Abilities of the LinchpinThe Seven Abilities of the Linchpin

• What does it take to be this person they can’t live without?

• Providing a unique interface between members of the organization

• Delivering unique creativity • Managing a situation or organization of great complexity • Leading customers • Inspiring staff • Providing deep domain knowledge • Processing a unique talent

A Turning PointA Turning Point

• “Instead of focusing on complying with management as a long-term strategy for getting more stuff and being more secure, we have a chance to describe a powerful vision for our future and to actually make it happen. The new dream isn’t about obedience, it’s about vision and engagement.”