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Survivorship care and research
Craig Earle, MD MSc FRCPC
Director, Health Services Research Program for Cancer Care Ontario & the Ontario
Institute for Cancer Research
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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
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3
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Incidence + survival = demand
4
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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)
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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?
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Cancer Care Trajectory
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Current survivorship care models in Canada
Follow-up care in cancer centre
Transfer of care to FP
Variable practices
Follow-up care varies markedly, especially Ontario
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Problems with the status quo
1. Dissatisfaction
2. Variable quality of care
3. Workforce issues
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1. Dissatisfaction
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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
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12
Communication and information needs
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Many survivors have little or no long-term problems, and some
have positive effects
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“It’s not over when it’s over”
• Patti Ganz– Journal of Oncology Practice 2006;2(2):79
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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.
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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
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“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
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“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
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From Cancer Patient to Cancer Survivor: Lost in Transition
- Institute of Medicine,
November 2005
(www.iom.edu)
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IOM Recommendation #1
• Recognize cancer survivorship as a distinct phase of cancer care
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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
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IOM Recommendation #2
• Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan
… (the) ‘survivorship care plan’
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Provider-provider communication
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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
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2. Variable quality of care
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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
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Surveillance components
• History and Physical
• Blood work, including tumor markers
• Imaging
• Examination of the primary site (e.g., endoscopy, mammography)
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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 rationale1. 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?
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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
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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
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Risks of overly-aggressive surveillance
• False positives– Mental anguish– Harm from invasive testing– Cost
• False negatives
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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 cureHx, Px, markers and imaging every 1-2 months
is as effective as upfront treatment with chemotherapy (NSGCT) or radiation (GCT)
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Intensive surveillance not beneficial:
Breast Cancer• Local recurrence and second primaries
can be curedMammography
• 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
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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 benefitASCO surveillance recommendations
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Long-term and late effects
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Late medical effects:depend on the type of therapy . . .
RadiationTherapy
Surgery
Chemotherapyand the specifictoxicities/organinteractions of each therapy
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Common long-term and late effects
Surgery Radiation Chemotherapy•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
•MDS, AML•‘Chemo brain’•Cardiomyopathy•Renal toxicity•Menopause•Infertility•Osteoporosis•Neuropathy
The Children’s Oncology Group http://www.survivorshipguidelines.org
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CancerSurvivorship
Physical wellbeing & SymptomsFunctional AbilityStrength/Fatigue
Sleep & RestNauseaAppetite
Constipation
Psychological Well BeingControlAnxiety
DepressionEnjoyment/LeisureFear of RecurrenceCognition/Attention
Distress of diagnosis & Treatment
Spiritual Well BeingMeaning of Illness
ReligiosityTranscendence
HopeUncertainty
Social Well BeingFamily Distress
Roles & RelationshipsAffection/Social Function
AppearanceEnjoymentIsolationFinances
Work
Dimensions of quality of life affected by cancer
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Non-cancer care
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Most patients diagnosed with cancer today will not die from it
Cause of death* %
Heart disease 35.5
Stroke 9.9
Lung cancer 4.3
Pneumonia 3.6
Chronic lung disease 3.0
Diabetes 2.5
Heart failure 2.4
Colon cancer 2.2
Ovarian cancer 1.5
*SEER data on breast cancer survivors
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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
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Oncologist’s responsibility to screen for other cancers?
(Cheung et al J Clin Oncol 2009)
None A little Some A lot Full
None 7 4 13 30 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
Onc
olog
ists
Survivors (n=448)
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Effect of provider type(Colon cancer survivors)
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Getting cancer may be a “teachable moment”
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3. Workforce issues
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Oncologist Supply Demand
Source: J Clin Practice 2007
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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
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Shared Care as a Solution
Distribution of Office Visits
18%
69%
13%
SharedNot SharedUnknown
Common examples of shared care
• Coronary artery disease• Diabetes• HIV infection• Chronic renal insufficiency• Bipolar disorder• Parkinson’s disease• Inflammatory bowel
disease• Seizure disorders
NAMCS, 2002NAMCS, 2002
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Randomized Trial(18 months follow-up)
Trial GroupDifference(95%CI)
PCPn = 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
Results – English RCT
*p<0.001 Grunfeld et al BMJ 1996
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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)
Spinal Cord compression
Pathological fracture
Uncontrolled local recurrence
KPS ≤ 70
Brachial plexopathy
Hypercalcemia
0
3
2
14
0
2
1
8
0
18
0
2
Grunfeld et al. JCO 2006
Canadian RCT Results
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Specialist
PCP
Specialist
PCP
Mental QoL
Physical QoL
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Specialist
PCP
PCP
Specialist
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Patient Satisfaction Questionnaire mean scores from baseline to 3 years
0
20
40
60
80
100
Baseline 6 Months 12 Months 18 Months 24 Months 36 Months
PCP
Specialist
Number of Responses
Specialist 475 439 423 400 389 296
PCP 469 433 411 386 371 277
p <0.0001
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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.
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Nurse-led models
Similar results:• No difference in
outcomes• Satisfaction measures
tend to favor nurse-led follow up • Brown et al, 2002
• Moore et al, 2002
• Koinberg et al, 2004
Systematic reviews• Cox, 2003
• Sheppard, 2004
• Lewis, 2009
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PCPs are willing to take this on
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Barriers to changing the model of survivorship care
Doctors adopt a new practice if it is:
• Obviously better for patients
• Easier (for them)
• Remunerated
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Summary1. 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• Communication is key to making this work• Local care organizations must determine what will work best for them
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