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Survivorship care and research

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).

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Survivorship care and research

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  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 • www.nccn.org • 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)

  5. 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?

  6. Cancer Care Trajectory

  7. 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

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

  9. 1. Dissatisfaction

  10. 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. Communication and information needs

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

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

  14. 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.

  15. 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

  16. “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

  17. “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

  18. From Cancer Patient to Cancer Survivor: Lost in Transition - Institute of Medicine, November 2005 (www.iom.edu)

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

  20. 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

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

  22. Provider-provider communication

  23. 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

  24. 2. Variable quality of care

  25. 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. 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

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

  27. 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 • 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?

  28. 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

  29. 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

  30. Risks of overly-aggressive surveillance • False positives • Mental anguish • Harm from invasive testing • Cost • False negatives

  31. 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)

  32. 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

  33. 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

  34. Long-term and late effects

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

  36. Common long-term and late effects The Children’s Oncology Group http://www.survivorshipguidelines.org

  37. Psychological Well Being Control Anxiety Depression Enjoyment/Leisure Fear of Recurrence Cognition/Attention Distress of diagnosis & Treatment Social Well Being Spiritual Well Being Family Distress Meaning of Illness Roles & Relationships Religiosity Affection/Social Function Transcendence Hope Appearance Uncertainty Enjoyment Isolation Finances Work Dimensions of quality of life affected by cancer Physical wellbeing & Symptoms Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Cancer Survivorship

  38. Non-cancer care

  39. Most patients diagnosed with cancer today will not die from it *SEER data on breast cancer survivors

  40. 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

  41. Oncologist’s responsibility to screen for other cancers? (Cheung et al J Clin Oncol 2009) Survivors (n=448) Oncologists

  42. Effect of provider type(Colon cancer survivors)

  43. Getting cancer may be a “teachable moment”

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