1. Cancer Survivorship in Primary Care
Arlene O’Rourke N.P.

2. 67% of patients treated now will be alive in 5 years
million
million
million
Approximately 15% of the 13.7 million estimated cancer survivors were diagnosed 20 or more years ago
67% of patients treated now will be alive in 5 years
75% of childhood cancer survivors will be alive in 10 years
Most common cancer sites-female breast-22%, prostate-20%, colorectal-9%, gynecologic-8%

3. History of the Development of Cancer Survivorship
1985 Fitzhugh Mullen first describes Cancer survivorship
1986-NCCS
1996-NCI establishes the office of Cancer Survivorship
2004-President’s Cancer Panel
2005-IOM-
2006-From Cancer patient to cancer survivor:Lost in Transition

4. Definitions
“An individual is considered to be a cancer survivor from the time of diagnosis through the balance of his or her life. Family members, friends and caregivers are also affected by the survivorship experience and therefore are included in this definition.
NCCS,IOM
2005

5. Definitions 5 years after diagnosis without recurrence
Living with, through and beyond a diagnosis of cancer
Death by other morbidity other then cancer
Rejection of the term survivor

6. Definition IOM Recommendation
Recognize cancer survivorship as a distinct phase of care
Patients completing primary treatment should be provided with a comprehensive care summary and follow up plan
Begins at the end of primary treatment with intention to cure and lasting until a recurrence, a secondary cancer or death. It may include ongoing treatment.

7. “Seasons of Survival” Acute survival Extended survival
Permanent Survival

8. Acute Survival Time of diagnosis Diagnostics, therapeutics,
Fear/anxiety
Disruption of family and social roles
Financial issues
Fear of death

9. Extended Survival: Transitional Fallow up
Treatment completion- uncertainty of treatment outcome
Watchful waiting
Periodic examinations
Consolidation/intermittent therapies/hormonal therapies
Fear of recurrence/death
Fatigue/physical limitations/lingering side effects

10. Permanent Survival: Extended follow up
“Cure”
Late effects of treatment may impact QOL, family, workplace and financial areas
Ability to return to ‘normal’
Lasting impact of cancer
Development of self confidence and self trust

11. Goals of Survivorship care
Preventing recurrence and secondary cancers
Promoting appropriate disease management following diagnosis and treatment to ensure the maximum number of years of a healthy life
Minimizing preventable pain, disability, and psychosocial distress
Assisting cancer survivors to access family, peer, community, and other resources they need to cope with their disease.

12. Goals of Survivorship Care
Empower survivors and families
Provide enhanced and better coordination of communication around survivorship care
Improve quality of life

13. Focus of Survivorship Care
Surveillance
Prevention
Intervention
Coordination

14. Surveillance Recurrent cancer and late effects Guidelines
Based on type of cancer, stage at diagnosis, tumor characteristics,related risk of recurrence

15. Prevention
New cancers
Recurrent cancer
Late effects
Guidelines

16. Interventions
Managing long term and late effects of treatment-organ dysfunction, mobility, fatigue, lymphedema, hormone/sexuality/fertility, secondary cancers
Improve medical and psychosocial outcomes.

17. Coordination
Improve communication between providers to promote best practice
Subspecialty referrals
Psychosocial referrals
Resources to support patient and family

18. Quality of life: Physical well being
Functional activities
Strength/fatigue
Sleep and Rest
overal physical health
Fertility
Pain

19. Quality of Life: Psychosocial
Control
Anxiety
Depression
Enjoyment/Leisure
Cognition/attention
Distress of diagnosis
Fear of recurrence
Control of treatment

20. Quality of Life: Social well being
Family distress
Roles and relationships
Affection/sexual function
Appearance
Enjoyment
Isolation
Finances
Work

21. Quality of Life: Spiritual well being
Meaning of illness
Religiosity
Transcendence
Hope
Uncertainty
Inner strength

22. Treatment related Toxicities: Long term and Late effects
Long term-effects that persist after completion of treatment
Late-occur after treatment has completed
Long and late effects can be tumor, treatment or host related.

23. Late effects Occur months to years following treatment
Related to organ injury that occurred from treatment
Failure of repair mechanisms over time and organ age
More prevalent as treatments have become more complex.

24. Tumor Related Factors Direct tissue effects
Tumor related organ dysfunction
Mechanical effects

25. Treatment Related Factors
Chemotherapy-agent, dose schedule and intensity
Radiation Therapy-Total dose and fraction size, radiated field
surgery-site and technique

26. Host Related Factors Genetic predisposition
Inherent tissue sensitivities and capacity for normal tissue repair
Function of organs not effected by treatment
Co-morbid conditions
Pre treatment psychosocial status

27. Surgery
organ impairment
Secondary side effects
loss of function

28. Chemotherapy Effects all organs- systemic therapy
Most side effects can resolve within 3-6 months of completing therapy
Cardiotoxicity
Neuropathy
Fatigue
Pain
Sexual dysfunction
Fertility
Blood dyscrasia
Pulmonary Toxicity
Bone Loss
Cognitive dysfunction
Liver dysfunction
Secondary Malignancy

29. Chemotherapy: Cardiac Toxicity
Anthracyclines-adriamycin-diastolic dysfunction
Platinums-cisplatin-artherosclerosis, endothelial damage
Her-2neu agents-Trastuzumab(Herceptin)-cardiac receptors-CHF/Cardiomyopathy
Antiangiogenesis agents-Bevacizumaub(Avastin)- CHF/Acute coronary Syndrome

30. Chemotherapy: Cardiotoxicity
1st manifests as diastolic dysfunction 5 years after treatment completion
CHF/Cardiomyopathy
High risk <18 >65, pre-existing cardiac disease, pregnancy, extreme sports/exercise
Leads to increased morbidity and mortality

31. Chemotherapy: Cardiotoxicity
Early intervention can improve LVEF
If left untreated for more then 6 months subclinical LV dysfunction is irreversible.

32. Pulmonary Toxicity Chemotherapy and xRT toxicity
Lung, BMT, Hodgkin’s lymphoma, testicular
Bleomycin,Gemcitiabine,BCNU, Mtx,
Interstitial pneumonitis,scarring, inflammation
Not reversible

33. Neuropathy Vinca Alkaloids Taxanes-may be reversible
Platinums-tinnitus/hearing loss
numbness/tingling/pain
Foot Drop
Parasthesias
Weakness
Decreased reflexes

34. Neuropathy Baseline exam- previous or current neurological diagnosis
Initiate therapy with Vitamin B therapy and Glutamine
PT/OT/Acupuncture
Neurontin/Cymbalta

35. Bone Loss
Steroids, hormone therapies-aromatase inhibitors; androgen deprivation, Ovarian failure, radiation therapy
Baseline bone density, vit D therapy, weight bearing exercises, biophosphatase therapy

36. Radiation Therapy Field/total dose
Breast, Hodgkin’s, prostate, lung,colorectal, bone mets, BMT
Incidence-10-30% within 5-10yrs post treatment
Latent yrs post treatment
Vascular-Reynauds, artherosclerosis
Skin changes
Heart-valve dysfunction, myocardial/pericardial changes, electrical conduction disruption
Thyroid changes
Dental changes
GI changes

37. Cancer Survivors have a 14% higher risk of secondary malignancies

38. Secondary Malignancies
Prior therapy exposures
Cancer syndromes- genetic
Host environment-lifestyle choices

39. Psychosocial Impact: Risk factors
Pre-treatment risk factors-
pre-existing mental health diagnosis
number of life stress events
Post treatment risk factors-
Decreased physical function
Decreased cognitive function
40% of oncologists and 50% 0f PCP’s feel confident to manage psychosocial distress

40. Interventions to decrease Psychosocial distress
Rehabilitation
Education
Therapy- group or individual
Support groups
Events
Exercise

41. Demands of Cancer Survivorship
Average of 3 specialists per patient
Treatments may be inpatient and outpatient
Time intensive and in specialized treatment facilities
Cancer treatment usually occurs in isolation from primary health care - communication, multiple medical records

42. Oncologists Challenges
total patients increased by 6%
Continuing patients 93% increase
New patients up by 23%- breast cancer patients-continuing - 126%!!
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43. Supply and Demand
Oncologists struggle with competing needs of patients undergoing active treatment and essentially well cancer survivors.
Growing shortage of PCP’s will be faced with an aging population with acute needs who will compete with essentially well appearing cancer survivors

44. Supply and Demand 2010-43 million supply/47 million demand Text

45. Challenges of the Primary Care Provider
Inadequate information about the cancer and treatment
Some cancers are rarely seen in the primary care setting
lack of knowledge and confidence about survivorship care
Patients lack of confidence in the knowledge of the primary care provider
Competing demands of time

46. Co-morbidities/Chronic illness
60% of cancer survivors have at least 1 co-morbid condition vs 45%
without cancer
Worse oncologic outcomes with poorly managed co-morbidities
1PCP per 10,000 decreases mortality rate in a community by 5.3%
85% o f cancer care is provided in community settings
Higher rate of screening and vaccinations in cancer survivors with PCP care
More Primary Care Providers =Better cancer Survivor care

47. Models of Care Shared care Risk based follow up
Disease specific clinics
Institution based programs

48. Shared Care Proven to improve outcomes PCP/Oncologist share care
Rule of thirds
Common with other specialties in mamagement of co-morbidities

49. Primary Care Support Surveillance plan Risk based cancer screening
Prevention
Genetics
Resources
Coordination of care

50. Survivorship Care Plans
Demographics
Treatment Summary
Follow up Care Plan

51. Guidelines NCCN-www.nccn.org ASCO-www.asco.org
Livestrong-
Journey Forward-

52. Barriers to Survivorship care
Finances
Educated and dedicated providers
Lack of acceptance and/or integration with disease based or general oncology programs
Space
Complexity of survivorship care
Lack of clear, evidence based guidelines on proper management
Limited knowledge of evolving management of co-morbidities

53. Next Steps...
Coordination of care
Medical Home
EHR
Education
Research