1. The ABCs of Achieving High Quality Survivorship Care
Melissa M. Hudson, MD
Cancer Survivorship Division

2. Overview Epidemiology of survivorship
Health risks affecting survivorship
Risk-based survivor care
Strategies and tools to achieve quality survivorship care
Clinical practice guidelines
Survivorship care plans
Models of survivorship care

4. Epidemiology of Cancer Survivorship
68% with 5-year survival in U.S.
83% in childhood cancers (0-14 years)
13 million survivors
18 million by 2022!
Lifetime probability of cancer in U.S.
Men: One in 2
Women: One in 3
Majority diagnosed > 60 years of age
Surveillance Epidemiology, and End Results,

5. Fertility & Reproduction Recurrent primary cancer
Health
Concerns
Growth & Development
Organ Function
Psycho-
social
Fertility & Reproduction
Subsequent
Cancers
Linear growth
Skeletal maturation
Intellectual function
Emotional/social maturation
Sexual development
Sexual functioning
Fertility
Health of offspring
Cardiac
Pulmonary
Endocrine
GI/Hepatic
Genitourinary
Musculoskeletal
Neurologic
Recurrent primary cancer
New primary
neoplasms
Mental health
Education
Social interactions
Physical & body image
Chronic symptoms
Employment
Insurance
Cancer
After
Cancer

6. Cumulative Prevalence
Prevalence of health conditions in childhood cancer survivors in St. Jude Lifetime Cohort
0.0
0.2
0.4
0.6
0.8
1.0
Cumulative Prevalence 10 20 30 40 50 60
Age in Years
Any chronic condition
Serious/life-threatening chronic condition
Clinical ascertainment of late effects in 1713 adult survivors
Median age at Dx: 6 yrs
(range, 0-24)
Median age at study: 32 yrs
(range 18-60)
Median time from Dx: 25 yrs
(range 10-47)
By age 45 years it is estimated that……
95.5% will have > 1 chronic health condition
80.5% will have a serious/disabling or life-threatening chronic health condition
Hudson et al, JAMA, 2013

7. Survival function estimate
Late Mortality in 5+ Year Survivors
All Cause Mortality in the CCSS Cohort
1.00
US Female
US Male
0.95
Population Controls
0.90
Survival function estimate
Cancer Survivors
0.85
Second cancer – Cardiac – 8.2
Pulmonary – 11.2
SMR % CI
0.80
CCSS
Female
0.75
CCSS
Male
0.70 5 10 15 20 25 30 35
Years since diagnosis
Mertens, et al, JNCI 2008

8. Improving Survivorship Outcomes
Health-related and QOL Outcomes
CANCER SURVIVORS
High-risk Groups
Development of Intervention Strategies
Evidence-based Clinical Care Guidelines
Clinical Trials of Efficacy
Implementation .
“Secondary “ Prevention
“Primary” Prevention
Cancer Diagnosis and Treatment

9. Issues Impacting Cancer Treatment Associated Morbidity
Provider
Patient
Cancer
Health Care
System
Cancer
Treatment
Morbidity

10. Issues Impacting Cancer Treatment Associated Morbidity
Provider
Patient
Cancer
Health Care
System
Histology/involved sites
Biology/response
Treatment
Surgery
Chemotherapy
Radiation
Transplant
Transfusion
Treatment events
Cancer
Treatment
Morbidity

11. Issues Impacting Cancer Treatment Associated Morbidity
Provider
Patient
Cancer
Health Care
System
Age at treatment & attained age
Sex, race & ethnicity
Familial & genetic factors
Pre & co-morbid conditions
Health behaviors
Cognitive & developmental status
Health knowledge
Health risk perceptions
Self efficacy
Insurance & healthcare access
Cancer
Treatment
Morbidity

12. Issues Impacting Cancer Treatment Associated Morbidity
Provider
Patient
Cancer
Health Care
System
Survivorship education & training
Survivorship experience
Practice style
Perceptions regarding preventive care
Access to survivorship resources
Knowledge & access to individual survivor health history
Cancer
Treatment
Morbidity

13. Issues Impacting Cancer Treatment Associated Morbidity
Financing & payment policies
Organization & affiliation of providers
Data systems & information sharing
Models of survivorship care
Insurance coverage and benefits supporting survivorship care (especially preventive, psychosocial services)
Community resources
Survivorship advocacy activity
Provider
Patient
Cancer
Health Care
System
Cancer
Treatment
Morbidity

14. Achieving High Quality Survivorship Care
Provider
Patient
Cancer
Health Care
System
Cancer
Treatment
Morbidity

15. Risk-Based Survivor Care
Surveillance for primary/subsequent cancers
Screening and management of late effects
Assessment and support of psychosocial functioning
Education about cancer-related health risks and behaviors/conditions modifying risk
Assistance with identifying and meeting medical and psychosocial challenges

16. Institute of Medicine, 2005
“Health care providers should use systematically developed evidence-based clinical practice guidelines, assessment tools, and screening instruments to identify and manage late effects of cancer and its treatment.”

17. Pediatric Guideline Design
Evidence linking late effects with therapeutic exposures
Screening recommendations based on
expert clinical experience
Allows identification of high-risk categories
Matches magnitude of risk with intensity of screening
Evidence-Based Guidelines for Childhood Cancer Survivors: A Hybrid Model

19. Clinical Practice Guidelines
Exposure-based
Includes screening and counseling based on specific chemotherapy, radiation doses/volumes and surgery
Disease-based
Focuses on modalities and health concerns related to a specific malignancy (e.g., NCCN breast, prostate)
Organ-system based
Considers specific organ systems affected by cancer or cancer therapy
Symptom-based
Targets symptoms common to many cancer diagnoses and treatment (e.g., fatigue, sleep, cognition)

20. Guidance for Long-Term/Late Effects
Depression & anxiety
Fatigue
Neuropathy
Weight change
Sexual dysfunction
Cardiac dysfunction
Chronic pain
Lymphedema
Osteoporosis
Cognitive dysfunction
Impaired fertility
Second cancers
Menopausal symptoms

21. Institute of Medicine, 2005
“Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained.”

22. Care Across Survivorship Spectrum
Primary Interventions
Risk-adapted therapy considering
cancer- and host-related factors
Cancer
Diagnosis
Secondary Interventions
Health education
Health screening/surveillance
Risk-reducing interventions
Long-Term
Survival
Oncology
Care
Survivor
Health &
QoL
Thus we arrive at a model using primary prevention measures starting from cancer diagnosis in a pediatric healthcare setting that shifts to secondary prevention measures when long-term survival is achieved that requires transition from a pediatric to adult health care setting.
Primary
Care
Hudson M, Cancer 2005

23. Challenges with Care Transitions
Survivors/Families
Are uninformed about details of cancer history
Have strong bond with treating clinicians
Fear transition
Oncology providers
Want to see long-term survivors
May not prepare survivor/GP for care transition
May not be informed about survivorship issues
May not consistent address preventive care

24. Challenges with Care Transitions
Primary care providers
Unfamiliar with survivor health issues
Subtypes are numerous/diverse
Treatments are diverse/constantly evolving
Have limited incentive to develop expertise
Many subtypes are rare
May be uncomfortable with caring for survivors, especially those who are medically complex

25. Oncology & Primary Care Providers Awareness of Late Effects
Survey of PCPs (n = 981) and Oncologists (n = 1,125) from AMA Masterfile
Absolute response: 57.6% (PCPs, 57.9%; oncologists, 58.3%)
Late Effect
(Therapy)
Oncologist
Aware
PCP Aware
Cardiac dysfunction
(doxorubicin)
95%
55%
Neuropathy
(oxaliplatin)
97%
22%
Premature menopause
(cyclophosphamide)
71%
15%
Nekhlyudov, JOP, 2013

26. Survivorship Care Plan
Personalized document from oncology clinician:
Summary of cancer history/treatment
Primary cancer surveillance plan
Cancer/cancer treatment health risks
Subsequent cancer/late effects screening
Lifestyle impact on cancer-related risks
Screening for/management of comorbid conditions
Definition of roles of involved providers
Resources to address medical/psychosocial needs

27. Survivorship Care Plans (SCPs) in Research and Practice
Do SCPs address known deficiencies in care?
Do they promote comprehensive care?
Can they be developed in busy clinics?
Are they being used once provided?
When is the optimal time to provide them?
Have SCPs been implemented widely?
Do SCPs include info recommended by the IOM?
The Institute of Medicine (IOM) recommends the use of survivorship care plans (SCPs) for all cancer survivors. Developing useful SCPs requires understanding what survivors and their providers need and how SCPs can be implemented in practice. Published studies investigating the perspectives of stakeholders (survivors, primary care providers, and oncology providers) were reviewed regarding the content and use of SCPs. All National Cancer Institute (NCI)-designated cancer centers were surveyed concerning the extent to which SCPs for survivors of breast and colorectal cancers are in use, their concordance with the IOM’s recommendation, and details about SCP delivery. Survivors and primary care providers typically lack the information the IOM suggested should be included in SCPs. Oncology providers view SCPs favorably but express concerns about the feasibility of their implementation. Fewer than one-half (43%) of NCI-designated cancer centers deliver SCPs to their breast or colorectal cancer survivors. Of those that do, none deliver SCPs that include all components recommended by the IOM. Survivors’ and providers’ opinions about the use of SCPs are favorable, but there are barriers to implementation. SCPs are not widely used in NCI-designated cancer centers. Variation in practice is substantial, and many components recommended by the IOM framework are rarely included. CA Cancer J Clin 2012;62: VC 2012 American Cancer Society.
Salz, CA Cancer J Clin, 2012

28. Survivorship Care Plans (SCPs) in Research and Practice
Concerns regarding feasibility of implementation
Limited data suggesting suboptimal uptake and adherence to inclusion of IOM components
Limited data addressing impact on health outcomes and access to care
No data evaluating cost to benefit of SCPs
Consensus regarding potential benefits in education and care coordination
A recent trial by Grunfeld et al is the only study to investigate the role of SCPs on health outcomes. 57 In a randomized controlled trial of 408 survivors of early stage breast cancer, all patients had their care transferred to a primary care provider for exclusive follow-up. In addition, patients in the intervention group received a comprehensive SCP
that was reviewed in a 30-minute educational session with an oncology nurse. The SCP was also sent to the patient’s primary care provider. A year after the intervention was delivered, there were no differences detected between groups on self-reported health outcomes, including cancer-specific distress, generalized distress, patient satisfaction, and general health status. Self-reported continuity of care and the identification of the primary care provider as the physician primarily responsible for follow-up also did not vary between groups. These findings suggest that for survivors of early stage breast cancer, an SCP in itself may not improve health outcomes. However, actual care provided by primary care providers was not assessed; the possibility remains that health outcomes may differ if primary care providers who receive SCPs deliver care differently from providers
who do not receive SCPs.
Salz, CA Cancer J Clin, 2013

29. Need for SCP research
Critical components
Optimal format(s)
Timing of delivery
Impact on health outcomes
Cost: benefit

30. Institute of Medicine, 2005
“…qualified organizations should support demonstration programs to test models of coordinated, interdisciplinary survivorship care in diverse communities and across systems of care.”

31. Models of Survivorship Care
Time
Treatment of Cancer
Cancer Center Follow-up
Long-Term Follow-Up
CommunityFollow-up
tertiary care centers with consultative services, free-standing cancer centers that integrate survivorship care within their disease-oriented teams using advanced practice nurses
Shared Care
Specialized
LTFU Clinic
Other Models
Adapted from Singer et al, Pediatr Blood Cancer, 2013

32. Models of Survivorship Care
Specialized LTFU Program
Usually based at cancer center
Cancer-related consultations
General or disease-oriented
Most do not provide primary care
Multidisciplinary care team
Medical
Psychosocial
Core components
Survivorship care plan
Delivery of risk-based care
Venue for research & training health care professionals
tertiary care centers with consultative services, free-standing cancer centers that integrate survivorship care within their disease-oriented teams using advanced practice nurses

33. Models of Survivor Care
Specialized LTFU Program
Community LTFU Care
Backbone of care for pediatric survivors
Limited number see adults
Cancer-related consultations
Based at hospital or cancer center
Multidisciplinary care team
Medical
Psychosocial
Core components
Survivorship care plan
Delivery of risk-based care
Venue for research & training health care professionals
Geographically and financially more accessible
Integrates survivor care and primary care
Focus on primary care health education
Less focus on cancer-related health education
Risk-based survivor-focused care dependent on provider/ survivor knowledge
Supports independence of young adult survivors
Poses challenges to outcomes research

34. Shared Survivorship Care
Follow-up in cancer center with transition to community
Ongoing contact with community providers
Continuous availability of cancer center team
Provides services to larger number of survivors
Potentially more cost-effective than cancer center follow-up
Maintains link to cancer center to monitor late outcomes

35. Gaps in Knowledge Regarding Long-term Outcomes: A Theoretical Model
1.00
Cancer Survivor Population
General Population
Excess Lifetime Morbidity
Associated with Cancer and Therapy ?
.75
.50
Cumulative Incidence
Advanced Onset of Morbidity Associated with Cancer and Therapy ?
.25
Age (Years)
Unknown
Emerging
Known

36. Achieving Quality Survivorship Care
Develop guidance for clinical management of long-term and late effects
Increase collaboration between oncology and primary care providers
Improve health professional education and training
Enhance patient/family education and self-advocacy
Support survivorship research
Promoting policy change to ensure access to health care services

37. Achieving High Quality Survivorship Care
Providing care in diverse health care settings
Cancer-center
Community oncologist
Primary care
Shared care
Serving diverse survivor populations
Race/ethnicity
Cultural
Education
Maintaining flexibility
“One size does not fit all”

38. Research to Address Knowledge Gaps
Characterize outcomes after cancer
Characterize high risk populations
Inform optimal screening methods
Define standards for survivorship care
Evaluate impact of care plans
Determine effective models of care
Identify methods to improve care coordination
Identify methods to motivate participation in health promotion

39. Achieving High Quality Survivorship Care
Advocating for policy change
Health Care Reform & Survivorship Care
Focus on screening, wellness, prevention
Improving reimbursement for care
Coordination of care by health care providers
Interventions to address psychosocial/practical concerns
Increase policy maker awareness of survivorship as a public health issue
Funding for cancer research

40. Thank you for your attention!
Acknowledgements
American Lebanese Syrian Associated Charities (ALSAC)
NCI Cancer Center Support (CORE) grant CA 21765