1. Survivorship care and research
Craig Earle, MD MSc FRCPC
Director, Health Services Research Program for Cancer Care Ontario & the Ontario Institute for Cancer Research

2. Objectives (key messages)
Communicating with patients about the plan for follow up can go a long way towards decreasing anxiety
Be judicious about the intensity of follow-up
Be open to non-oncologist based models of survivor care

4. Incidence + survival = demand

5. Next 10 years Ontario to see 40% increase in people living with cancer
J. Natl. Cancer Inst :236; doi: /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)

6. 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?
Gleevec and CLL pts

7. Cancer Care Trajectory

8. 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

9. Problems with the status quo
Dissatisfaction
Variable quality of care
Workforce issues

10. 1. Dissatisfaction

11. 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 11

12. Communication and information needs

17. Many survivors have little or no long-term problems, and some have positive effects

18. “It’s not over when it’s over”
Patti Ganz
Journal of Oncology Practice 2006;2(2):79

19. 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

20. 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

21. “No one warned me that once treatment was over everything would change
“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

22. “When I was in treatment, I had all the steps laid out in front of me
“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

23. From Cancer Patient to Cancer Survivor: Lost in Transition
- Institute of Medicine,
November 2005 (

24. IOM Recommendation #1
Recognize cancer survivorship as a distinct phase of cancer care

25. 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

26. IOM Recommendation #2
Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan
… (the) ‘survivorship care plan’

27. Provider-provider communication

28. 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

29. 2. Variable quality of care

30. Follow up practices for breast cancer, Hodgkin’s disease, colorectal cancer, and endometrial cancer in Ontario
Large variation in practice
Both over-use and under-use of visits and tests compared to published guidelines
Grunfeld et al J Oncol Pract Jul;6(4):
Hodgson et al Cancer Jul 15;116(14): )
Kwon et al. Obs Gyn 2009;113(4):

31. Surveillance components
History and Physical
Blood work, including tumor markers
Imaging
Examination of the primary site
(e.g., endoscopy, mammography)

32. Surveillance for recurrence
Problem: Lack of evidence
ASCO – Strict evidence-based: only breast and colorectal guidelines (incl. tumor markers)
NCCN – evidence-based consensus (
ESMO – evidence-based consensus (Ann Oncol. 2005;16 Suppl 2)
‘Cancer Patient Follow Up’ (Johnson & Virgo) – Expert opinion
In some cases, lack of rationale
Does surveillance detect recurrence earlier than it would otherwise become apparent?
If so, does early intervention improve the outcome of recurrent disease?
If so, does it do so in a cost-effective manner?
Everyone wants evidence-based recommendations for surveillance, but the problem is a lack of evidence
Consequently, ASCO only has guidelines for breast and colorectal cancer follow up
The National Comprehensive Cancer Network, which takes a less strict evidence-based approach to their consensus guidelines incorporate recommendations for follow up into their algorithms, and the European Society of Medical Oncology published a supplement last year with recommendations for follow up of many different cancers
There’s a whole textbook devoted to this topic by Frank Johnson and Kathy Virgo in which they survey experts from around the world in order to compare their follow up practices
In addition to a lack of evidence, in many cases there’s even a lack of rationale. Aside from a few examples, like oligometastatic recurrence of colorectal cancer, most solid tumors cannot be cured once they metastasize, and in most cases there has not been a clear advantage to early institution of palliative chemotherapy in asymptomatic patients.
[read 3 bullets on slide]
I’ve seen recommendations, for example, to do CT scans on patients every 6 months after resection of pancreaticobiliary tumors, but I find it hard to even come up with a rationale for that.

33. 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
The problem of a lack of evidence-based recommendations is not an easy one to fix
Randomized trials are needed because it’s impossible to control for lead time and length time biases:
Detecting relapse earlier will make patients appear to live longer after relapse even if they die on the same day they otherwise would have, and asymptomatic recurrence picked up by testing will tend to be more indolent than ones that are identified because they caused symptoms
Because the possible survival benefits are small, the sample sizes need to be large. For example, if, optimistically, 10% of colorectal cancer patients relapse with potentially resectable oligometastatic disease and 1/3 of those can be cured, a study would have to be powered to detect a 3% absolute difference in survival
What’s tested in these studies is not as simple as a drug and a placebo, but rather a complex strategy. Consequently, when the studies are negative there’s quibbling about whether the frequency or thresholds of the different components were optimal
These are long studies. With patients now living longer after relapse due to advances in palliative treatments, it takes years to reach the endpoint
Lastly, even if a strategy is found to improve survival, it may not be deemed cost-effective, because surveillance involves upfront costs for uncertain, future benefits, and so the benefits are discounted in analyses

34. 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
The main rationale for detecting recurrence early is to improve survival, however, in most cases there’s not much evidence that we can actually do that
We talk about the psychological benefits of being able to reassure patients, but the evidence actually is that follow up visits are extremely stressful for patients and so may increase distress
Detecting catastrophic complications of unrecognized recurrence is sometimes cited, things like spinal cord compression or pathological fractures. However, a randomized study done by Eva Grunfeld in Canada showed that patients only followed by their PCP were no more likely to suffer these events than patients followed regularly by oncologists
Finding good PS patients with metastatic disease allows them the opportunity to enroll in clinical trials, but the fact that only a few percent of patients are ever treated on clinical trials weakens that argument somewhat
One could argue that patients can benefit from knowing that their cancer has recurred and they only have a limited lifespan, in order to allow them to take that trip back to the homeland before they get sick, and maybe it’s paternalistic of us to think that they’re better off not knowing about their recurrence until there’s a symptom or sign. This may be the best rationale in some cases

35. Risks of overly- aggressive surveillance
False positives
Mental anguish
Harm from invasive testing
Cost
False negatives
There are also risks to surveillance
Most surveillance tests don’t give a clear yes or no answer
The mildly elevated CEA following a chest cold can cause mental anguish. There can be complications from trying to biopsy a non-specific finding on the resultant scan, and all of this is costly
There are also false negatives. In fact, in a patient who eventually relapses, everything we’ve done up until then is a false negative and so we’ve been giving false reassurance to patients

36. 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)

37. 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

38. 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

39. Long-term and late effects

40. Late medical effects:
depend on the
type of therapy . . .
Surgery
Radiation
Therapy
and the specific
toxicities/organ
interactions of each therapy
Chemotherapy

41. 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
Bone fractures
MDS, AML
‘Chemo brain’
Cardiomyopathy
Renal toxicity
Menopause
Infertility
Osteoporosis
Neuropathy
ASCO guidelines story
The Children’s Oncology Group

42. Dimensions of quality of life affected by cancer
Psychological Well Being
Control
Anxiety
Depression
Enjoyment/Leisure
Fear of Recurrence
Cognition/Attention
Distress of diagnosis & Treatment
Physical wellbeing & Symptoms
Functional Ability
Strength/Fatigue
Sleep & Rest
Nausea
Appetite
Constipation
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

43. Non-cancer care

44. 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
Story
Note that many of these are possibly preventable: Smoking-related medical problems (e.g. lung cancer, COPD), lifestyle-related disorders (obesity & inactivity related to both breast cancer and diabetes), and preventable cancers (colon cancer). This, despite the fact that they all presumably have regular contact with health professionals.
Because a breast cancer dx brings patients into the health care system, MDs have the opportunity to intervene. It’s conceivable that looking out for some of these general medical issues may be more important to survival than follow up after primary treatment of the cancer.

45. Under use of necessary care among cancer survivors (Earle & Neville
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

46. Oncologist’s responsibility to screen for other cancers
Oncologist’s responsibility to screen for other cancers? (Cheung et al J Clin Oncol 2009)
None
A little
Some
A lot
Full 7 4 13 30 26 2 6 27 41 39 10 8 44 38 23 28 1
Survivors (n=448)
Oncologists

47. Effect of provider type (Colon cancer survivors)

48. Getting cancer may be a “teachable moment”

52. 3. Workforce issues

53. Oncologist Supply  Demand
Source: J Clin Practice 2007

54. At Sunnybrook there are 10,000 1 year follow ups booked

55. Survivorship care models
Oncologist follow up
PCP follow up
Dedicated survivorship clinics
Nurse or PA -led }
Shared
Care
Facilitated by treatment summary and care plan

56. Shared Care as a Solution
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, 2002

57. Results – English RCT Randomized Trial Difference Trial Group (95%CI)
(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
All results at 18 months of follow-up
Total of 26 recurrences: 10 in GP group; 16 in hospital group
Study was powered to detect a 3month difference in delay at 90% and alpha=0.05 needed 30 recurrences
Time with patient” 3.39 visits in GP group; 2.8 visits in hospital group
Costs per patient = average cost over 18 months of follow-up per patient (includes costs of visits and costs of tests
Time for the patient per appointment = to and from appointment, waiting to see the doctor, with the doctor, does not include costs for the accompanying person.
NO difference in deterioration in HRQOL
GP patients more satisfied
*p< Grunfeld et al BMJ 1996

58. 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)
Spinal Cord compression
Pathological fracture
Uncontrolled local recurrence
KPS ≤ 70
Brachial plexopathy
Hypercalcemia 3 2 14 1 8 18
Canadian RCT Results
Grunfeld et al. JCO 2006

59. Specialist
PCP
Mental QoL
Physical QoL
Specialist
PCP

60. PCP
Specialist
PCP
Specialist

61. Patient Satisfaction Questionnaire mean scores from baseline to 3 years
With respect to the outcome of patient satisfaction, patients in the FP Group were the same at baseline but then significantly more satisfied at each time point with approximately 5 point higher scores.
p <0.0001
Number of Responses
Specialist
475
439
423
400
389
296
PCP
469
433
411
386
371
277

62. 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:

63. 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

64. PCPs are willing to take this on

65. Barriers to changing the model of survivorship care
Doctors adopt a new practice if it is:
Obviously better for patients
Easier (for them)
Remunerated

66. Summary
We’re not meeting our patients’ or our colleagues’ needs in the survivorship phase
Simple communication can go a long way towards improving care
The quality of care is variable
Both overuse and underuse
Most survivorship practices not based on evidence
Evidence is hard to get
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