Presentation is loading. Please wait.

Presentation is loading. Please wait.

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

Similar presentations

Presentation on theme: "Survivorship care and research Craig Earle, MD MSc FRCPC Director, Health Services Research Program for Cancer Care Ontario & the Ontario Institute for."— Presentation transcript:

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) 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 3.Be open to non-oncologist based models of survivor care

3 3

4 Incidence + survival = demand 4

5 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)

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?

7 Cancer Care Trajectory

8 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

9 Problems with the status quo 1.Dissatisfaction 2.Variable quality of care 3.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

12 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. 2005.

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. 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. 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 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

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 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?

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

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

35 Risks of overly- aggressive surveillance False positives –Mental anguish –Harm from invasive testing –Cost False negatives

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... Radiation Therapy Surgery Chemotherapy and the specific toxicities/organ interactions of each therapy

41 Common long-term and late effects SurgeryRadiationChemotherapy 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

42 Cancer Survivorship 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 Spiritual Well Being Meaning of Illness Religiosity Transcendence Hope Uncertainty Social Well Being Family Distress Roles & Relationships Affection/Social Function Appearance Enjoyment Isolation Finances Work Dimensions of quality of life affected by cancer

43 Non-cancer care

44 Most patients diagnosed with cancer today will not die from it Cause of death*% Heart disease35.5 Stroke9.9 Lung cancer4.3 Pneumonia3.6 Chronic lung disease3.0 Diabetes2.5 Heart failure2.4 Colon cancer2.2 Ovarian cancer1.5 *SEER data on breast cancer survivors

45 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? (Cheung et al J Clin Oncol 2009) NoneA littleSomeA lotFull None74133026 A little26274139 Some108394438 A lot710232839 Full10024 Oncologists Survivors (n=448)

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


55 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

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 Randomized Trial (18 months follow-up) Trial Group Difference (95%CI) PCP n = 148 Specialist n = 141 Time to diagnosis of recurrence (days) 22 days21 days1.5 (-13 to 22) Total time with the patient (min)35.620.714.9* (11.3 to18.4) Cost per patient (£s)65195- 130 * (-149 to -112) Time cost to the patient (min)5382- 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

58 Outcome EventPCP (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

59 Specialist PCP Specialist PCP Mental QoL Physical QoL

60 Specialist PCP Specialist

61 Patient Satisfaction Questionnaire mean scores from baseline to 3 years Number of Responses Specialist475439423400389296 PCP469433411386371277 p <0.0001

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;94:1116-1121.

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 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 Communication is key to making this work Local care organizations must determine what will work best for them


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

Similar presentations

Ads by Google