patient-centered standards for cancer diagnosis, treatment and survivorship

GW Cancer InstituteCenter for the Advancement of

Cancer Survivorship, Navigation and Policy

Patient-Centered Standards for Cancer Diagnosis, Treatment and

Survivorship

Anne Willis, MACancer Survivor

Director, Division of Cancer SurvivorshipDirector, Center for the Advancement of Cancer

Survivorship, Navigation and PolicyGW 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.

“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.”

Why Patient-Centeredness?

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)

Institute of Medicine. Crossing the Quality Chasm. 2001.

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.

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

Post-treatment

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 patient-

centered 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

39%

70%

0% 10% 20% 30% 40% 50% 60% 70% 80%

Fiv

e Y

ear

Su

rviv

al R

ate

Before accessto screening &patientnavigation(1964-1986)*

After access tosceening &patientnavigaton(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

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

28

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

Cancer and Comorbidities

29

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

Osteoporosis

Cancer

Psychosocial Stress (anxiety, depression, insomnia, cognitive deficiency)

Diabetes

Heart Disease, Hypertension, Stroke

Arthritis

Emphysema, Asthma, COPD

Overweight / Obesity

30

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

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

32

Common Long-Term / Late Effects by Treatment Type

Treatment Long-term side effects Late side effects

Chemotherapy FatiguePremature menopause

Sexual dysfunction Neuropathy“Chemo brain”Kidney failure

Vision/cataractsInfertilityLiver problemsLung diseaseOsteoporosisReduced lung capacitySecond primary cancers

Radiation therapy FatigueSkin sensitivity

Lymphedema

CataractsCavities and tooth decayCardiovascular diseaseHypothyroidismInfertilityLung diseaseIntestinal problemsSecond primary cancers

Surgery Sexual dysfunction IncontinencePain

Body image disturbance

Functional disability

Infertility

Source: Mayo.com

Top 5 Survivor Concerns

0

10

20

30

40

50

60

70

FearfulIllness Will

Return

Fatigue/Lossof Strength

Concernabout

Relapsing

Fears aboutthe Future

SleepDifficulties

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

9

2213 15 19

44

31

30 2511

0

10

20

30

40

50

60

Energ

y

Concent

ratio

n

Sexual

Functio

ning

Nuerop

athy

Pain

Did NOT receive care

Received care

Survivor Needs LIVESTRONG Survey

Percentage of Respondents Who Received Care for Emotional Concerns

22 25 17 12 9

53 3946

3731

010203040

50607080

Fear o

f rec

urre

nce

Saddn

ess

and

depre

ssion

Grief a

nd id

entity

Family

mem

ber r

isk

Perso

nal a

ppear

ance

Did NOT receive care

Received care

Survivor Needs LIVESTRONG Survey

Percentage of Respondents Who Received Care for Practical Concerns

37

11 10 6

36

2923

15

0

10

20

30

40

50

60

70

80

Schoolissues

Employmentissues

Debt 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 CareTreatment 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 CareFollow-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 behaviorsInstitute of Medicine Lost in Transition report. Adapted from the President’s Cancer Panel.

Survivorship CareFollow-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

Challenges of Survivorship Care

• Fragmented delivery system

• 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.

Challenges of Survivorship Care

• Lack of agreement on who should provide care

• Diverse survivorship populations

• Huge change in the culture of oncology

• 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 evidence-

based 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 Centerwww.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 patient-centered cancer care across the continuum

GW Cancer InstituteCenter for the Advancement of

Cancer Survivorship, Navigation and Policy

Thanks!

Anne Willis, MAannewillis@gwu.edu

202-994-0988