GW Cancer Institute Center for the Advancement of Cancer Survivorship, Navigation and Policy

Patient-Centered Standards for Cancer Diagnosis, Treatment and Survivorship
Anne Willis, MA Cancer Survivor Director, Division of Cancer Survivorship Director, Center for the Advancement of Cancer Survivorship, Navigation and Policy GW Cancer Institute

Objectives
• Define patient-centeredness as a function of quality care • Describe several organizations that set care standards • Discuss patient-centered standards that impact cancer care across the continuum

Quality Care
• • • • • • Safe Effective Patient-Centered Timely Efficient Equitable

Institute of Medicine. Crossing the Quality Chasm. 2001.

Why Patient-Centeredness?
“For diseases that are often chronic and sometimes incurable, with interventions that can have toxic and long-term consequences, it is especially important that decisions influencing patient outcomes reflect the patient’s own perspective. Cancer provides a compelling case in point.”

Lipscomb J, Gotay CC, Snyder C. Patient-reported outcomes in cancer: a review of recent research and policy initiatives. CA, 2007;57: 278-300, p 278.

Patient-Centered Definition: Institute of Medicine
Health care that establishes a partnership among practitioners, patients and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.
Institute of Medicine. Crossing the Quality Chasm. 2001.

Why Patient-Centeredness?
• • • • • Right thing to do Improved care Improved well-being Addresses disparities Better value

Epstein et al. Health Affairs. Why the nation needs a policy push on patient-centered health care. 2010.

Cancer Care Continuum

Prevention

Diagnosis

Treatment

Posttreatment

End of Life

Care Standards
• National Comprehensive Cancer Network (NCCN) • American Society of Clinical Oncology (ASCO) • Association for Community Cancer Centers (ACCC) • Commission on Cancer (CoC)

The Commission on Cancer (CoC)
• American College of Surgeons • Consortium of professional organizations
– Physicians, nurses, administrators, registrars, govt, etc. – Patient advocacy groups

• 1,500 accredited institutions
– Care for 71% of newly diagnosed patients

• Standards across the continuum

CoC: New Patient-Centered Standards
• 2.3: Risk assessment and genetic counseling • 2.4: Palliative care • 3.1: Patient navigation process • 3.2: Psychosocial distress screening • 3.3: Survivorship care plan

GWCI Center for the Advancement of Cancer Survivorship, Navigation & Policy
• National and local training center
– In-person and online trainings for different audiences

• Focus on
– Widespread implementation of patientcentered standards – Advancing the fields of navigation and survivorship through collaboration

Patient Navigation

Definition
Patient Navigation is an intervention that addresses barriers to quality standard care by providing individualized assistance to patients, survivors and families.

Results of Harlem Study
0% 10% 20% 30% 40% 50% 60% 70% 80%

Five Year Survival Rate

39%

Before access to screening & patient navigation (1964-1986)*

70%

After access to sceening & patient navigaton (1995-2000)**

Freeman HP, Wasfie TJ (1989). Cancer of the breast in poor black women. Cancer, 63(12), 2562-2569. Oluwale/Freeman, Journal of American College of Surgeons, 2003.

Evolution of Patient Navigation
• • • • • Expansion across the cancer continuum Replication in various diseases NCI Patient Navigation Research Program Competitive advantage for institutions Ease workforce shortages

What Navigators Do
• • • • • • • • Reduce barriers Educate Build partnerships in the community Coordinate appointments Maintain communication Arrange for/connect with support Teach self-advocacy Provide access to clinical trials

CoC: Patient Navigation Process
• Assess community needs
– Identify disparities, barriers or gaps in care

• Develop and implement a navigation process to address issues
– Work with community-based or national organizations to provide resources

Other Standards
• National Patient Navigation Collaborative • ACCC guidelines • Professional Societies
– Academy of Oncology Nurse Navigators – National Coalition of Oncology Nurse Navigators – Oncology Nursing Society – National Association of Social Workers

Psychosocial Distress

Areas of Need
Cancer Treatment Information Emotions Related to Cancer Managing the Illness

Changing Behaviors

Material and Logistical Resources

Disruptions in Work, School, and Family

Financial Advice and Assistance

Institute of Medicine. Cancer Care for the Whole Patient. 2008.

Barriers to Screening
• • • • • • • • Knowledge Lack of clarity Beliefs Values Assumptions Level of skill Pressure to do more with less System barriers

CoC: Psychosocial Distress Screening
• Process in place to monitor distress
– Time period and method defined by cancer committee – Services are provided on-site or by referral
• May include community or national organizations

Other Standards
• NCCN Guidelines for Management of Psychosocial Distress • ASCO/QOPI measure
– Patient emotional well-being assessed by the second office visit

Survivorship

Who is a Cancer Survivor?
• Several definitions – 5 years after diagnosis – From the moment of diagnosis through the balance of life – Including family and caregivers – After completion of treatment • Survivors don’t always use the word survivor

Why the Increased Focus on Survivorship?
• Rapidly growing population of survivors due to advances in diagnosis and treatment – Nearly 13.7 million cancer survivors in the U.S. – Predictions of 18 million by 2020 – Five-year adult survival is 62% – Ten-year survival for pediatric cancers is 75% • Greater emphasis on patient-centered care • Increasing expectations by survivors for good quality of life

National Reports

Survivorship by Time Since Diagnosis

Source: American Cancer Society, Cancer Treatment & Survivorship Facts & Figures, 2012; Data Modeling Branch, Division of Cancer Control and Population Sciences, NCI 28

Cancer and Comorbidities
Heart Disease, Hypertension, Stroke Psychosocial Stress (anxiety, depression, insomnia, cognitive deficiency)

Cancer
Arthritis Osteoporosis

Emphysema, Asthma, COPD

Diabetes

Overweight / Obesity

Source: Smith, et al. (2008). Cancer, comorbidities, and health-related quality of life of older adults. Health Care Finance.

29

Quality of Life Domains and Impact of Cancer and its Treatment

Source: City of Hope, Beckman Research Institute, 2004, reproduced with permission in the American Cancer Society’s Cancer Treatment & Survivorship Facts & Figures, 2012 30

Survivorship Terms
• Long-term effects
– Side effects or complications of treatment – Begin during treatment and continue beyond treatment

• Late effects
– Unrecognized toxicities that are absent or subclinical at the end of treatment – Occur months and years after treatment

Common Long-Term / Late Effects by Treatment Type
Treatment
Chemotherapy

Long-term side effects
Fatigue Premature menopause Sexual dysfunction Neuropathy “Chemo brain” Kidney failure Fatigue Skin sensitivity Lymphedema

Late side effects
Vision/cataracts Infertility Liver problems Lung disease Osteoporosis Reduced lung capacity Second primary cancers Cataracts Cavities and tooth decay Cardiovascular disease Hypothyroidism Infertility Lung disease Intestinal problems Second primary cancers Body image disturbance Functional disability Infertility

Radiation therapy

Surgery

Sexual dysfunction Incontinence Pain

Source: Mayo.com 32

Top 5 Survivor Concerns
70 60 50 40 30 20 10 0
Fearful Fatigue/Loss Illness Will of Strength Return Concern about Relapsing Fears about the Future Sleep Difficulties

1-YR

3-YRS

6-YRS

11-YRS

Source: American Cancer Society Studies of Cancer Survivors

Survivor Needs LIVESTRONG Survey
Percentage of Respondents Who Received Care for Physical Concerns
60 50 40 30 20 10 9 0 22 13 15 19 44 31 30 25 11

Did NOT receive care Received care

Nu er op at hy

Co nc en tra Se t io xu n al Fu nc t io ni ng

En er gy

Pa in

Survivor Needs LIVESTRONG Survey
Percentage of Respondents Who Received Care for Emotional Concerns
80 70 60 50 40 30 20 10 0

53

39

46 37 31 9

Did NOT receive care Received care

22

25

17

12

Sa dd n

fr ec ur es re s nc an e d de pr es sio G rie n fa nd id Fa en m tit ily y m em Pe be rr rs on isk al ap pe ar an ce

Fe ar o

Survivor Needs LIVESTRONG Survey
Percentage of Respondents Who Received Care for Practical Concerns
80 70 60 36 50 40 30 29 20 10 11 0 School issues Employment issues Debt 10 37 23 15 6 Insurance Did NOT receive care Received care

Current Survivorship Care
• Patients find follow-up by oncologists reassuring • Duration of follow-up is variable • Limited follow-up guidelines for adults • Focused on recurrence and surveillance • Limited communication with primary care provider

Goals of Survivorship Care
• Follow-up care
– Surveillance for recurrence – Screening for second cancers – Assessment and treatment of medical and psychosocial issues – Health promotion: smoking cessation, diet and exercise

• Communication and coordination with primary care physician

Survivorship Care Treatment Summary
• • • • Diagnostic tests and results Tumor characteristics Dates of treatment initiation and completion All treatment, including agents used, regimen, total dosage, response, toxicities • Psychosocial and other supportive services provided • Full contact information for treating institutions • Key point of contact for coordinating care
Institute of Medicine Lost in Transition report. Adapted from the President’s Cancer Panel.

Survivorship Care Follow-up Care Plan
• Likely course of recovery/ongoing maintenance needs • Recommended cancer screening and tests, including schedule and who should perform it • Information on
– Long term and late effects and their symptoms – Signs of recurrence and second cancers – Possible effects on relationships, sexual functioning, work, parenting, and future needs for psychosocial support – Potential insurance, employment, and financial consequences and referrals when needed

• Recommendations for healthy behaviors
Institute of Medicine Lost in Transition report. Adapted from the President’s Cancer Panel.

Survivorship Care Follow-up Care Plan
• As appropriate, information on genetic counseling and testing • As appropriate, information on known effective chemoprevention strategies for secondary prevention • Referrals to specific follow-up care providers • Listing of cancer-related resources and information
Institute of Medicine Lost in Transition report. Adapted from the President’s Cancer Panel.

Survivorship Care Plan Template
American Society of Clinical Oncology (www.asco.org) free templates

Survivorship Care Plan Template
American Society of Clinical Oncology (www.asco.org) free templates

Survivorship Care Plan Template
American Society of Clinical Oncology (www.asco.org) free templates

Survivorship Care Plan Template
GWCI (www.gwmc.edu/gwci) free template

Survivorship Care Plan Template
GWCI (www.gwmc.edu/gwci) free template

• Fragmented delivery system

Challenges of Survivorship Care

• Lack of awareness of the late effects of cancer and its treatment

• Poor communication
• Lack of survivorship standards of care • Capacity for delivering care
Institute of Medicine Lost in Transition report.

• Lack of agreement on who should provide care • Diverse survivorship populations • Huge change in the culture of oncology

Challenges of Survivorship Care

• Great need for patient and provider education • Still trying to understand the right economic model

CoC: Survivorship Care Plan
• Provided by principal provider(s) who coordinated treatment with input from other care providers • Given to patient upon completion of treatment • Contains record of care received to include:
– Disease characteristics – Follow-up care plan including recognized evidencebased standards of care – Minimum standards included in IOM fact sheets

Other Standards
• • • • NCCN disease-based guidelines ASCO Survivorship Guidelines ACCC guidelines National Cancer Survivorship Resource Center (The Survivorship Center)

The Survivorship Center
www.cancer.org/survivorshipcenter
• Collaboration with GWCI and American Cancer Society, cooperative agreement with the CDC • Current activities:
– Guidelines for primary care providers – Cancer Survivorship E-Learning Series for Primary Care Providers – Provider and survivor resources

Conclusion
• Widespread recognition of the need for patient-centered care • Cancer standard-setting organizations have the potential to rapidly influence cancer care • Patients will benefit greatly from patientcentered cancer care across the continuum

GW Cancer Institute Center for the Advancement of Cancer Survivorship, Navigation and Policy

Thanks!
Anne Willis, MA annewillis@gwu.edu 202-994-0988