Download The Patient Perspective on Value In Cancer Care

The Patient Perspective on
Value In Cancer Care
Diane Blum, LMSW, FASCO
January 22, 2016
Disclosure
• I have the following disclosure to report:
– Genentech: consulting
Question
• There is a clear definition of value in cancer
treatment.
–
–
–
–
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A. Strongly Disagree
B. Disagree
C. Neutral
D. Agree
E. Strongly Agree
Question
• Value is a concept that should be discussed with
a patient in decision making.
–
–
–
–
–
A. Strongly Disagree
B. Disagree
C. Neutral
D. Agree
E. Strongly Agree
Question
• Value tools and decision aids improve decision
making and care plans.
–
–
–
–
–
A. Strongly Disagree
B. Disagree
C. Neutral
D. Agree
E. Strongly Agree
Question
• Value and cost are linked.
–
–
–
–
–
A. Strongly Disagree
B. Disagree
C. Neutral
D. Agree
E. Strongly Agree
Why We Are Here
• Training Physicians to Provide High-Value Cost
Conscious Care: JAMA
• The Value of Considering Cost and the Cost of Not
Considering Value: JCO
• Value-Based Cancer Care: NEJM
• When Determining Value in Cancer Care, Don’t Forget
the Patient: NCCN
• Is This Cancer Treatment Worth it? Bloomberg News
• Even Insured Face Crushing Medical Debt: NYT
• New tools for value: ESMO, ASCO, NCCN, Drug Abacus
New Environment
•
•
•
•
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Personalized medicine
Big data
New reimbursement models
Patient centered care/measurement
Drug approvals
Outline
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•
•
•
•
Define value
Describe why cancer is different
Discuss how patients perceive value
Integrate cost into value
Highlight clinical techniques and use of
decision aids to help patients assess value
Definitions
• Warren Buffet: Price is what you pay, value is
what you get.
• Michael Porter, Elizabeth Teisberg: outcomes
relative to cost; also say creation of value for
patient determines the rewards for all others.
• ACA uses the term value 200 times but doesn’t
define
• NICE: Value is based on scientific value
judgments, including clinical and economic
evaluation and social value judgment, including
efficiency and effectiveness.
• Patient advocacy definition
Definition of Value
An intervention in cancer care can be
described as having value if patients, their
families, physicians, and health insurers all
agree that the benefits afforded by the
intervention are sufficient to support the
total sum of resources expended for its
use.
Scott Ramsey, The Oncologist 2010
Why is Cancer Different?
•
•
•
•
Life threatening
Sense of urgency
Imperative to use new drugs, more drugs
Side effects that are ongoing and
upsetting
• Reluctance to stop active treatment
Value is a Dynamic Process
• Hopes and expectations change through
the continuum of the illness and must be
assessed regularly.
• Perception of value changes from cure to
palliation.
• Value rests not only in clinical response
but sometimes in trying.
What Determines Value
for the Patient?
•
•
•
•
Clinical benefit, influenced by stage
Side effects (QOL)
Cost
Individual preference
– logistics
– character style
– culture
Determining Value by Cost
• Concept of financial toxicity
• Distress of financial burden leading to nonadherence and compromise on other necessities
• The benefit of discussions about cost even with
limited information
– Choose lower cost where there are alternatives
– Some will choose less to get financial relief
– Seek financial assistance, learn about resources
Influences on Decision Making
• Helping patients understand cost is part of
shared decision making but emotions and
intuition will play a large role.
• Overwhelmed, uneven playing field, then
introduce cost.
• “How much would you spend for a 5% increase
in your chance of surviving for 5 years?”
• “The triple whammy:” bad news, talking to doctor
about money, making choices of money vs.
survival.
How to Help the Patient Assess
Value: Choosing Wisely Campaign
• Effort of the ABIM: 2012 and 2013
• To encourage conversations between
physicians and patients aimed at curbing the
use of certain tests and procedures that are not
supported by clinical research.
• Avoid unnecessary anticancer therapy, including
chemotherapy, in patients with advanced solid
tumor cancers who are unlikely to benefit, and
instead focus on symptom relief and palliative
care.
How to Help the Patient Assess
Value: Shared Decision Making
• Direct discussion of patient’s diagnosis, prognosis,
treatment options, end of life care
• Acknowledging patient preference for how information is
provided
• “Please tell me your story and what you think of all that
has happened that brings us to this point”
• “I have ideas I want to discuss with you about treatment
choices, but first, I want to hear what your primary
concern is today”
• “I will listen to my patient, her values, and preferencesproceed with what we are both comfortable with”
• Plan of care rests on personalized discussion with a
well-informed patient
Decision Aids that Help
• Shared decision-making process often
incorporates decision aids
• Aids increase patients’ knowledge, improve
treatment expectations, increase participation in
decision making
• Provide a structure for discussion
• Variety of media and hundreds of them
– Stage IV NSCLC decision aid
– IOM Delivering High Quality Cancer Care: questions
for patients
– JAMA High-Value Care
Case Presentation: SM
• 56 year old woman with refractory metastatic
colon cancer, referred to new physician
• She describes herself as willing to try anything
• Physician suggests an oral multi-kinase inhibitor
that has been shown to prolong median survival
by 6 weeks
• Side effects of treatment: hand foot syndrome,
hypertension, fatigue, diarrhea
Veena Shankaran, MD, U of Washington School of Medicine
Case Presentation: SM
• At the pharmacy, SM discovers that she
must pay $1,870 out of pocket as co-pay
• SM charges this on 3 credit cards,
including her 24 year old son’s card
• After 3 months and $5,610, SM develops
significant side effects and progressive
disease and enrolls in hospice
Insuring Value for SM
• Assess SM’s and her family’s
understanding of her current medical
situation.
– A. Strongly Disagree
– B. Disagree
– C. Neutral
– D. Agree
– E. Strongly Agree
Insuring Value for SM
• Present specific data from clinical trial for
the recommended drug.
– A. Strongly Disagree
– B. Disagree
– C. Neutral
– D. Agree
– E. Strongly Agree
Insuring Value for SM
• Present approximate cost and co-pay for
drug to patient.
– A. Strongly Disagree
– B. Disagree
– C. Neutral
– D. Agree
– E. Strongly Agree
Insuring Value for SM
• Prescribe according to the indication.
– A. Strongly Disagree
– B. Disagree
– C. Neutral
– D. Agree
– E. Strongly Agree
Case Presentation: KG
• 32 year old married man with 2 year old
child
• 2 years post melanoma resection on back
• Recurrence in liver and lung; symptomatic
with cough
• Physician suggests immunotherapy, 2
drug regimen
• Year of drug cost alone is $300,000
What Would You Do to Minimize
Financial Toxicity for KG?
• Understand the family’s work and financial
situation.
–
–
–
–
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A. Strongly Disagree
B. Disagree
C. Neutral
D. Agree
E. Strongly Agree
Minimizing Financial Toxicity
• Learn the approximate cost to the patient
and overall cost and inform the family.
–
–
–
–
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A. Strongly Disagree
B. Disagree
C. Neutral
D. Agree
E. Strongly Agree
Minimizing Financial Toxicity
• Present the alternative of one drug with
data and cost information.
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–
–
–
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A. Strongly Disagree
B. Disagree
C. Neutral
D. Agree
E. Strongly Agree
Minimizing Financial Toxicity
• Refer for outside help to address financial
burden.
–
–
–
–
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A. Strongly Disagree
B. Disagree
C. Neutral
D. Agree
E. Strongly Agree
Moving Forward
• New drugs with good outcomes (value!)
• Access to drugs that work
• Skills and techniques to discuss choices
and help people have more control over
decisions
• New tools to measure value and
communicate about it
References
1. Back A, Arnold R, Baile, W et al: Teaching communication skills to medical oncology fellows. J Clin Oncol 21:
2433-2436, 2003
2. Burwell S: Setting value-based payment goals-HHS efforts to improve U.S. Health Care. N Engl J Med: published
online, January 26, 2015
3. Bullock A, Hofstatter E, Yushak M: Understanding patients’ attitudes toward communication about the cost of
cancer care. J Oncol Prac 8:e50-e58, 2012
4. Hofstatter E: Understanding patient perspectives on communication about the cost of cancer care: a review of
the literature. J Oncol Prac 6(4): 188-192, 2010
5. Hoverman R: From the first visit on: information technology and communication. J Oncol Prac: 9(3) 152-153,
2013
6. Institute of Medicine: A system in crisis: charting a course for high quality cancer care. Natl Academies Press,
2013Hoverman R: From the first visit on: information technology and communication. J Oncol Prac: 9(3) 152153, 2013.
7. Ramsey S, Schickedanz A: How should we define value in cancer care? Oncologist 15:1-4, 2010
8. Saltz L: The value of considering cost and the cost of not considering value. J Clin Onc, published online
December 14, 2015
9. Ubel, P: Beyond costs and benefits: understanding how patients make health care decision. Oncologist 15
supplement: 5-10, 2010.
10. Ubel P, Abernathy A, Zafar S: Full disclosure-out of pocket costs as side effects. N Engl J Med 369(16): 14841486, 2013
11. Young, R. Value-based cancer Care. N Engl J Med 373:2593-95, 2015
12. Zafar SY, Abernathy AP: Financial Toxicity part 1: a new name for a growing problem. Oncology 27:80- 81, 2013
Links
• Decision Aid NSCLC
– http://www.asco.org/sites/www.asco.org/files/nsclc_all_decision_
aids_11.12.09_0.pdf
• IOM- Patient Questions
– http://iom.nationalacademies.org/Reports/2013/Delivering-HighQuality-Cancer-Care-Charting-a-New-Course-for-a-System-inCrisis.aspx?utm_source=feedburner&utm_medium=feed&utm_c
ampaign=Feed%3A+IomTopicHealthServicesCoverageAndAcce
ss+(IOM+Topic%3A+Health+Services+Coverage+and+Access)
• JAMA- Value Questions for Patients
– http://jama.jamanetwork.com/article.aspx?articleid=2474426