Transcript From Cancer Patient to Cancer Survivor: Lost in Transition

Survivorship care and research
Craig Earle, MD MSc FRCPC
Director, Health Services Research Program
for Cancer Care Ontario & the Ontario
Institute for Cancer Research
Objectives
(key messages)
1. Communicating with patients about the plan
for follow up can go a long way towards
decreasing anxiety
2. Be judicious about the intensity of follow-up
•
www.nccn.org
3. Be open to non-oncologist based models of
survivor care
3
Incidence + survival = demand
4
J. Natl. Cancer Inst. 2008 100:236; doi:10.1093/jnci/djn018
• Next 10 years Ontario to see 40% increase in people living with cancer
• By 2017, the estimated number near half a million (406,000)
Survivor Definitions
Medical Model: disease-free 5 yrs after
completion of therapy
Advocate: a person with cancer is a survivor from
the time of diagnosis through the remainder of
life
• National Coalition for Cancer Survivorship. Charter. Silver
Spring, MD: National Coalition for Cancer Survivorship, 1986.
• Include family members and caregivers as well?
Cancer Care Trajectory
Current survivorship care models in Canada
Follow-up
care varies
markedly,
especially
Ontario
Follow-up care in cancer centre
Transfer of care to FP
Variable practices
Problems with the status quo
1. Dissatisfaction
2. Variable quality of care
3. Workforce issues
1. Dissatisfaction
Ontario Cancer Plan: explicit goal to
improve the patient experience along
every step of the cancer journey
A particular
area of
patient
dissatisfaction
on survey
Communication and information needs
12
Many survivors have little or no
long-term problems, and some
have positive effects
“It’s not over when it’s over”
• Patti Ganz
– Journal of Oncology Practice 2006;2(2):79
Myths about Ending Treatment
•
•
•
•
I should be celebrating
I should feel well now
I should be back to my pre-cancer self
I shouldn’t need support anymore
Stanton, Ganz,, Rowland, et al Cancer. 2005.
The truth about ending treatment
• Counter to the expectation that treatment
completion and full recovery of health and
well being occur simultaneously, the
literature suggests that treatment
completion can be disruptive
psychologically.
Promoting adjustment after treatment for cancer Annette L. Stanton, Patricia A. Ganz, Julia H. Rowland,
Beth E. Meyerowitz, Janice L. Krupnick, Sharon R. Published Online: 24 Oct 2005
“No one warned me that once treatment
was over everything would change. I was
like a rock star while I was having
treatment--then poof, I’ve been dropped
off of the map and no one seems to care
much anymore. “
prostate survivor, reflecting on the first few months off treatment
“When I was in treatment, I had all the
steps laid out in front of me. I knew what I
had to do to fight this disease. Now, I find
myself wanting to go to clinic, to be getting
chemo, to DO SOMETHING. I am just
sitting here, alone now, waiting for it to
come back.”
Breast ca survivor, 4 weeks out
From Cancer Patient to Cancer
Survivor: Lost in Transition
- Institute of Medicine,
November 2005
(www.iom.edu)
IOM Recommendation #1
• Recognize cancer survivorship as a
distinct phase of cancer care
Survivorship is a distinct clinical entity
with its own cross-cutting issues
• Surveillance
– Recurrence
• Local
• Distant
– New cancers
• Genetic/environmental predisposition
• Late & persistent effects of treatment
– Organ dysfunction, mobility, fatigue, lymphedema,
hormonal/sexuality/fertility, second cancers
• Non-cancer care
– Screening/prevention
– Other medical conditions
– Lifestyle/behavioral interventions
• Employment/insurance (health, life, disability)
• Psychosocial
– Fear, relationships, cosmesis, cognitive
IOM Recommendation #2
• Patients completing primary treatment
should be provided with a comprehensive
care summary and follow-up plan
… (the) ‘survivorship care plan’
Provider-provider communication
Why are there MD communication
problems in cancer in particular?
• Multidisciplinary care
– An average of > 3 cancer doctors /patient
• Complex
– Treatment takes place in a variety of settings
(inpatient, outpatient, specialized facilities)
across time and space
– Multiple medical records
• Often takes place in isolation from PCPs
2. Variable quality of care
Follow up practices for breast cancer,
Hodgkin’s disease, colorectal cancer,
and endometrial cancer in Ontario
1. Large variation in practice
2. Both over-use and under-use of visits
and tests compared to published
guidelines
- Grunfeld et al J Oncol Pract. 2010 Jul;6(4):174-81.
- Hodgson et al Cancer. 2010 Jul 15;116(14):3417-25)
- Kwon et al. Obs Gyn 2009;113(4): 790-795
Surveillance components
•
•
•
•
History and Physical
Blood work, including tumor markers
Imaging
Examination of the primary site
(e.g., endoscopy, mammography)
Surveillance for recurrence
•
Problem: Lack of evidence
–
–
–
–
•
ASCO – Strict evidence-based: only breast and colorectal
guidelines (incl. tumor markers)
NCCN – evidence-based consensus (www.nccn.org)
ESMO – evidence-based consensus (Ann Oncol. 2005;16
Suppl 2)
‘Cancer Patient Follow Up’ (Johnson & Virgo) – Expert opinion
In some cases, lack of rationale
1. Does surveillance detect recurrence earlier than it would
otherwise become apparent?
2. If so, does early intervention improve the outcome of recurrent
disease?
3. If so, does it do so in a cost-effective manner?
Challenges to surveillance
research
• RCTs generally required
– Lead time & length time biases
• Large sample size
• Complex strategy
• Long duration
– Improving non-curative treatments
• Economic evaluation
– Discounting
Rationale for detecting
recurrence early
• Improve survival
• Improve QoL
– Psychological reassurance
– Detect catastrophic complications
• Enroll in clinical trials
• Allow patients to plan/put affairs in order
Risks of overlyaggressive surveillance
• False positives
– Mental anguish
– Harm from invasive testing
– Cost
• False negatives
Intensive surveillance beneficial:
Testicular Cancer
• Recurrences are usually within the first 2 yrs
• Successful salvage exists
• Therefore, can treat less aggressively;
decrease long-term and late effects without
compromising cure
Hx, Px, markers and imaging every 1-2 months
is as effective as upfront treatment with
chemotherapy (NSGCT) or radiation (GCT)
Intensive surveillance not beneficial:
Breast Cancer
• Local recurrence and second primaries
can be cured
Mammography
• Metastatic disease cannot be cured
• Two large RCTs of surveillance
(& a meta-analysis of them)
– B/W, chest & abdominal imaging, bone scans
– No difference in survival or QoL
Intensive surveillance controversial:
Colon Cancer
• Local recurrence uncommon; premalignant
polyps common => colonoscopy
• < 10% relapse with oligometastatic disease
~ 1/3 of those can be cured
• 6 RCTs unable to demonstrate survival benefit
– The curable relapses are indolent and would be
found anyway?
• Only urgency for metastases => metastases
– Meta-analyses suggest CEA and imaging may
slightly improve survival
• If anything, it’s the low-risk patients that benefit
ASCO surveillance recommendations
Long-term and late effects
Late medical effects:
depend on the
type of therapy . . .
Surgery
Radiation
Therapy
and the specific
toxicities/organ
interactions of each
therapy
Chemotherapy
Common long-term and late effects
Surgery
Radiation
•Cosmesis
•Functional disability
•Pain
•Organ damage
•Scarring/adhesions
•Hernia
•Lymphedema
•Systemic
–endocrine, spleen
•Second malignancies
•Neurocognitive
•Dry eyes, cataracts
•Xerostomia, caries
•Hypothyroidism
•CVD, myopathy
•Pneumonitis/fibrosis
•Strictures, proctitis
•Infertility, impotence
•Lymphedema
•Bone fractures
Chemotherapy
•MDS, AML
•‘Chemo brain’
•Cardiomyopathy
•Renal toxicity
•Menopause
•Infertility
•Osteoporosis
•Neuropathy
The Children’s Oncology Group http://www.survivorshipguidelines.org
Dimensions of quality of life affected by cancer
Physical wellbeing & Symptoms
Functional Ability
Strength/Fatigue
Sleep & Rest
Nausea
Appetite
Constipation
Psychological Well Being
Control
Anxiety
Depression
Enjoyment/Leisure
Fear of Recurrence
Cognition/Attention
Distress of diagnosis & Treatment
Cancer
Survivorship
Social Well Being
Family Distress
Roles & Relationships
Affection/Social Function
Appearance
Enjoyment
Isolation
Finances
Work
Spiritual Well Being
Meaning of Illness
Religiosity
Transcendence
Hope
Uncertainty
Non-cancer care
Most patients diagnosed with cancer
today will not die from it
Cause of death*
Heart disease
Stroke
Lung cancer
Pneumonia
Chronic lung disease
Diabetes
Heart failure
Colon cancer
Ovarian cancer
%
35.5
9.9
4.3
3.6
3.0
2.5
2.4
2.2
1.5
*SEER
data on
breast
cancer
survivors
Under use of necessary care
among cancer survivors
(Earle & Neville. Cancer 2004;101(8):1712-9)
• 14,884 5-year colorectal survivors, matched
to controls
• 44 quality of care indicators, divided into
acute and chronic care
• Survivors less likely to receive
recommended care for chronic conditions
and prevention
– Despite having more physician visits
Oncologist’s responsibility to
screen for other cancers?
Oncologists
(Cheung et al J Clin Oncol 2009)
None
None
7
Survivors (n=448)
A little Some A lot
4
13
30
Full
26
A little
2
6
27
41
39
Some
10
8
39
44
38
A lot
7
10
23
28
39
Full
1
0
0
2
4
Effect of provider type
(Colon cancer survivors)
Getting cancer may be a
“teachable moment”
3. Workforce issues
Oncologist Supply  Demand
Source: J Clin Practice 2007
Survivorship care models
1. Oncologist follow up
2. PCP follow up
3. Dedicated survivorship clinics
– Nurse or PA -led
}
Shared
Care
Facilitated by
treatment
summary and
care plan
Shared Care as a Solution
Distribution of Office Visits
13%
Common examples of
shared care
18%
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Shared
Not Shared
Unknown
69%
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NAMCS, 2002
Coronary artery
disease
Diabetes
HIV infection
Chronic renal
insufficiency
Bipolar disorder
Parkinson’s disease
Inflammatory bowel
disease
Seizure disorders
Results – English RCT
Randomized Trial
(18 months follow-up)
Trial Group
Difference
(95%CI)
PCP
n = 148
Specialist
n = 141
Time to diagnosis of recurrence
(days)
22 days
21 days
1.5 (-13 to 22)
Total time with the patient (min)
35.6
20.7
14.9* (11.3 to18.4)
Cost per patient (£s)
65
195
- 130 * (-149 to -112)
Time cost to the patient (min)
53
82
- 29 * (-37 to -23)
• No difference in health-related quality of life over time
• No difference in anxiety or depression over time
• PCP patients more satisfied
*p<0.001
Grunfeld et al BMJ 1996
Canadian RCT Results
Outcome Event
PCP
(n=483)
Specialist
(n=485)
Risk Difference
(95% CI)
Number of Patients (%)
Recurrence
Distant
Local
Contralateral
54 (11.2%)
36
10
11
64 (13.2%)
38
12
15
2.02%
(-2.13, 6.16)
Death (All Causes)
29 (6.0%)
30 (6.2%)
0.18% (-2.90,
3.26)
Serious Clinical Events
17 (3.5%)
18 (3.7%)
0.19%
(-2.26, 2.65)
0
3
2
14
0
2
1
8
0
18
0
2
Spinal Cord compression
Pathological fracture
Uncontrolled local recurrence
KPS ≤ 70
Brachial plexopathy
Hypercalcemia
Grunfeld et al. JCO 2006
Specialist
PCP
Mental QoL
Physical QoL
Specialist
PCP
PCP
Specialist
PCP
Specialist
Patient Satisfaction Questionnaire
mean scores from baseline to 3 years
100
80
60
40
PCP
20
Specialist
0
Baseline
6 Months
12 Months
18 Months
24 Months
36 Months
p <0.0001
Number of
Responses
Specialist
475
439
423
400
389
296
PCP
469
433
411
386
371
277
Colorectal cancer follow-up:
Surgeon vs PCP
• RCT; 203 patients; median follow-up 24 months
• PCP provided with a guideline
• Outcomes – quality of life; anxiety; satisfaction
- adherence to guideline
• No difference in primary outcomes
• PCPs-more frequent visits
• Surgeon-more frequent imaging and endoscopy
Wattchow et al. BJC 2006;94:1116-1121.
Nurse-led models
Similar results:
• No difference in
outcomes
• Satisfaction measures
tend to favor nurse-led
follow up
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Brown et al, 2002
Moore et al, 2002
Koinberg et al, 2004
Systematic reviews
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Cox, 2003
Sheppard, 2004
Lewis, 2009
PCPs are willing to take this on
Barriers to changing
the model of survivorship care
Doctors adopt a new practice if it is:
• Obviously better for patients
• Easier (for them)
• Remunerated
Summary
1. We’re not meeting our patients’ or our colleagues’ needs in the
survivorship phase
– Simple communication can go a long way towards improving care
2. The quality of care is variable
– Both overuse and underuse
– Most survivorship practices not based on evidence
• Evidence is hard to get
3. There are looming workforce issues
 Studies show that non-specialist providers can deliver this care
 Getting physicians to change their model of care is very difficult
 Some form of shared care is likely the best solution
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Communication is key to making this work
Local care organizations must determine what will work best for them