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Cancer Survivorship Care:
Global Perspectives and Opportunities for
Nurse-Led Care
Carrie Tompkins Stricker, PhD, CRNP, AOCN®
Oncology Nurse Practitioner
Abramson Cancer Center, University of Pennsylvania
Chief Clinical Officer,
On Q Health, Inc.
Objectives
• To define cancer survivorship & describe
survivorship care as a distinct phase of
the cancer care trajectory
• To provide an overview of cancer
survivorship care plans
– Goals, challenges, models, & care plans
• To identify and expand vision for nursing
roles in cancer survivorship care
Data source: Ries LAG, Melbert D, Krapcho M, Stinchcomb DG, Howlader N, Horner MJ, Mariotto A, Miller BA, Feuer EJ, Altekruse SF, Lewis DR,
Clegg L, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2005, National Cancer Institute. Bethesda, MD,
http://seer.cancer.gov/csr/1975_2005/, based on November 2007 SEER data submission, posted to the SEER web site, 2008.
-Also:-Also: http://seer.cancer.gov/csr/1975_2008/,http://seer.cancer.gov/csr/1975_2008/,
Estimated Number of Cancer Survivors in the
United States From 1971 to present
*14.5 million**14.5 million*
as of 1/1/15as of 1/1/15
True in Australia as well
• 1 in 2 men will be
diagnosed with cancer
before their 85th
birthday; 1 in 3 women
• Cancer diagnoses
expected to rise to
150,000 (from
~120,000) by 2020
• Survivorship
– 2/3 of people diagnosed
with cancer are likely
to survive 5 years or
Cancer survivorship worldwide
• Nearly 28.7 million
cancer survivors
globally
• in 184 countries
• within five years of
diagnosis (2008)
• Most prevalent
cancer
– Breast cancer (> 5
million)
• Most prevalent among
women in 145 countries
–
http://www.iarc.fr/en/media-centre/iarcnews/2011/globocan2008-prev.php
Cancer survivor, vs. cancer
survivorship care
• Cancer survivor (NCCS definition)
– Anyone diagnosed with cancer, from the time
of diagnosis and for the balance of life
Cancer Survivorship Care
Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.
Why the unique emphasis on
cancer survivorship care?
Well, finally! I thought this thing would
never end!!!
Cancer Survivorship Care: Global Perspectives and Opportunities for Nurse-Led Care
Background
• Cancer survivors have unique needs
– Less contact with oncology team during the
survivorship period
– Complex medical and non-medical issues
• Symptoms, psychosocial issues, function, recovery,
long term and late effects
– Many needs remain unmet in current health
care system
– Coordination of care for cancer survivors
remains problematic
- Ganz PA, Casillas J, & Hahn EE (2008). Ensuring Quality Care for Cancer Survivors: Implementing the
Survivorship Care Plan. Seminars in Oncology Nursing 24(3): 208-217
- Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.; - Grunfeld & Earle, 2010.
Symptom Burden and
QOL in Survivors
• ~1/3 of survivors
experience symptoms
after treatment
equivalent to during
treatment
• Most common:
– Fatigue
– Depression or mood
disturbance
– Sleep disruption
– Pain
– Cognitive limitations
Supportive Care Needs of Survivors
Inadequately Addressed
•n = 3,129 diverse cancer survivors
Cancer survivorship:
What are other issues?
• Care for cancer
survivors
– is often not
standardized or
systematized
– is not personalized
– is poorly coordinated
• Both under- and over-
utilization of services
is common
– is highly variable in
- Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.;
- Grunfeld & Earle, 2010.
Underuse of necessary cancer-related
care
• Cancer surveillance
– 38% of older breast cancer survivors do not
receive annual mammography
• Late effects surveillance
• Only 14% to 26% of prostate cancer survivors
at risk for osteoporosis are screened/treated
• 80% of Hodgkin’s Disease survivors s/p
mantle radiotherapy don’t undergo
recommended echocardiograms
1. Salloum et al., 2012; 2. Schapira et al., 2000; 3.Tanvetyanon T. Cancer. 2005;103:237-241.
4. Yee EF, et al. J Gen Intern Med. 2007;22:1305-1310. Oeffinger, K.C., et al., Pediatric Blood &
• Cancer, 2010. 56(5): p. 818-824.
Under Use of Necessary Chronic Care
in Cancer Survivors
N=14,884 colorectal cancer survivors vs. matched
controls
•Cancer survivors more likely to not receive
recommended chronic care (OR 1.19, 95% CI,
1.12-1.27).
– E.g., follow-up care for CHF, diabetes, &
recommended preventive services.
•Elderly, poor, & minorities esp. at risk
Earle & Neville, 2004
Over-use of unnecessary care
Implications of Variations in &
Poor Coordination of Care
• Unnecessary costs
• Reduced opportunity
for new patient
visits
• Dissatisfied
referring providers
• Underutilization of
appropriate and
necessary care
– Potential for delayed
diagnosis and
Cancer survivorship:
Why the gaps in care?
• Health care
providers of
survivors
– Are often
focused on other
issues
– Cannot keep up
with demand
– Often lack
knowledge about
survivorship
–
- Ganz PA, Casillas J, & Hahn EE (2008). Ensuring Quality Care for Cancer Survivors: Implementing the
Survivorship Care Plan. Seminars in Oncology Nursing 24(3): 208-217
- Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in
Transition. The National Academies Press: Washington, D.C.
Oncologist Workforce Shortage Looming
Erikson et al., ASCO Workforce Report, JOP, 2007
14 % increase14 % increase
48 % increase48 % increase
Gap of 9.4-15.0 million visitsGap of 9.4-15.0 million visits
68% of oncologist’s visits are for care of patients68% of oncologist’s visits are for care of patients
> 1 year from diagnosis> 1 year from diagnosis
Consequences
• Much cancer survivorship care must be
shifted to the community & primary care
– Oncologists must see new patients
• Cancer survivors will increasingly
shoulder burden of navigating ongoing
care
– self-management strategies will assume
increasing importance
Institute of Medicine & National Research Council, 2006;
Opportunity!
• Nurses strengths/skill sets are perfectly
positioned for survivorship care
– Prevention & education
– Early detection
– Intervention
– Coordination
– Promoting self-management
Survivorship care:
What are its components?
• Prevention
• Surveillance
• Intervention
• Coordination
Institute of Medicine & National Research Council, 2006
Survivorship care:
What are its components?
• Prevention of new & recurrent cancers, and of
other late effects
• Surveillance for cancer recurrence, or second
cancers; assessment for medical and
psychosocial late effects
• Intervention for consequences of cancer & its
treatment, including symptoms and medical &
psychosocial problems
• Coordination between specialty & primary care
Institute of Medicine & National Research Council, 2006
Nurse-led survivorship care
• Definition
– Delivery of evidence-based, patient-centered care
focused on outcomes, delivered by APNs
• Barriers
– Patient perceptions
– Physician (consultant) perceptions
– Competing responsibilities
• Solutions
– Partner & establish credibility first
– Set expectations from start of treatment
– Share data!
Gates and Krishnasamy (2009). CancerForum 33
Evolving data on outcomes of
nurse-led survivorship care
• Pilot studies of U.S., Australia “end of
treatment/transition visits” show:
– high patient satisfaction1,3,4
– reduced patient concerns/unmet needs2,4
– improved preparedness to manage healthcare3
1.Crowley et al 2010; 2.Jagielski et al 2010; 3.Salner et al 2012; 4.Jefford et al. 2011;1.Crowley et al 2010; 2.Jagielski et al 2010; 3.Salner et al 2012; 4.Jefford et al. 2011;
Randomized trials of nurse-led care
• RCT’s of specialty nurse-led models of
follow-up care (U.K., Sweden) show:
– No difference in time to detecting recurrence or in
overall survival5, 8
– Equivalent or superior patient satisfaction5,6,8
&QOL7,8
– Improved symptom control8
– No increase in anxiety5,7,8
– Greater referrals and liaison w/support services9
5. Beaver et al., ’09 6. M Kimman et al., 2010; 7. Kimman et al., 2011. 8. Koinberg et
al.2004, 9. Faithfull et al Br J Cancer. 2001;85:1853-64.
Global care models involving
nursing
• U.K.
• Australia
• Canada
• U.S.A.
Cancer Survivorship Care: Models
• What is a “model” of survivorship care?
– No broad consensus
– “Involves a broad an holistic approach to follow-up
care for cancer survivors, addressing multiple needs”
– Models highly variable across settings
– Common goal
• Improving quality of care through comprehensive,
coordinated, tailored follow up care
M.T. Halpern et al (2015). Models of Survivorship Care.M.T. Halpern et al (2015). Models of Survivorship Care. J Oncol Pract 11J Oncol Pract 11(1).(1).
What is the evidence for various
models?
• Bottom line
– Extremely limited, research needed!
• Technical brief prepared for AHRQ*
– Only 9 studies meeting criteria
• Include > 2 survivorship care components
– Identified nurse-led, physician-led,
survivorship care plan centered, & individual
vs. group models
*AHRQ = Agency for Healthcare Research and Quality
M.T. Halpern et al (2015). Models of Survivorship Care. J Oncol Pract 11(1).
U.K. – National Cancer Survivorship
Initiative
• Partnership between National Health
Service (NHS), MacMillan Cancer Support,
Department of Health
– …. And many others
• Focus
– Risk-stratified pathways for breast, prostate,
and colorectal cancer
• Nurse role critical to implementation!
– Special thanks to Surpal Grewal, CNS for sharing her role!
http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdf
U.K. – National Cancer Survivorship
Initiative
http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC1448http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC1448
1howtoguide.pdf1howtoguide.pdf
Preliminary data on pathways from
NHS improvement sites
http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdf
Critical elements for self-managed pathway
•Remote surveillance, IT support
•Guaranteed reaccess
•Patient needs
Nurse specialist central to self-management
pathway
U.K.: Moving survivorship earlier in the
continuum
http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC1
4481howtoguide.pdf
Australia
• Thanks to Michael Jefford and Nicole Kinnane
for sharing!
Cancer Survivorship Care: Global Perspectives and Opportunities for Nurse-Led Care
Cancer Survivorship Care: Global Perspectives and Opportunities for Nurse-Led Care
Cancer Survivorship Care: Global Perspectives and Opportunities for Nurse-Led Care
Canada
• Example from Ontario
• Thanks to Jennifer Jones, PhD
Survivorship Care: Ontario
Wellness Beyond Cancer Program
• Group sessions for patients and families post-
treatment to promote self care and empowerment
• A consultation service for family physicians/nurse
practitioners including a rapid re-entry process
• A health professional educational strategy
• An evaluation framework & plan for a research
agenda.
Content of SCP
1) Disease information
2) Treatment information
3) Surveillance Plan
4) Persistent and late effects and their
management
5) Symptoms to report
6) General health and wellness information
Electronic solution:
Medical information drawn from existing UHN databasesMedical information drawn from existing UHN databases
Lives in EPR as a link to external platformLives in EPR as a link to external platform
Survivorship Care Program Development
Electronic SCP
Nursing Training
Model of Delivery
On-line Education
Models of Care – U.S.
Clinical Models
• Multidisciplinary
• Disease specific
• Consultative service
• Integrated Care
Model
• Others
– “Shared Care” model
an umbrella for
several
Providers
• MD
• Oncologist
• Primary care
• Nurse Practitioners
• Oncology
• Primary care
• Combined MD/NP
• Nurse navigators
Multidisciplinary
Advantages
• Easy for patients
• Comprehensive
• Good model for complex
patient (brain tumors)
• Common pediatric model
Challenges
• Resource intense
• Difficult to coordinate
• Possible multiple co-pays
• Not everyone needs all
services
•Patients seen/evaluated by different providers in the
context of a single clinic visit
•Oncology, endocrinology, neuropsychology, neurology,
social work, etc.
Consultative Service
Advantages
• Serves unrestricted survivor
population, outside referrals
• Provides core service, tx
summary/care plan
• Reinforces need for primary
care f/u and transition out of
cancer clinic setting
Challenges
• Difficult to be “expert” in long
term f/u issues for all diseases
• Difficult to have consensus
guidelines for f/u for all
• Buy in from patients & multiple
providers for patient referrals
difficult (patient choices for
PCP)
One time or annual consult visit
general survivorship issues
provide treatment summary/care plan
Referral to subspecialist, PT, nutrition, psych, etc.
Establish primary care home for survivor
Group Survivorship Care
Group survivor visits
(Duke)
– 6 survivors per group
session
– Individualized TS
prepared pre-visit by
NP
– Survivor engaged in
preparing SCP
– 45 minute group
session followed by
<20 minute post-session
visit with NP
– Multi-disciplinaryTrotter K. et al., 2009.Trotter K. et al., 2009.
Disease/Treatment Specific
Advantages
• Focused scope of practice
• Easier to make consensus
guidelines for f/u
• Good model for complex
patients (brain tumors, HCT)
• Good way to start out
Challenges
• Inequality
• May not address survivors with
greatest needs
• Survivorship clinic for specific cancer type
• e.g., breast, testicular, GYN, GI, Young Adults
• Can be developed for psychosocial services only
Integrated Care Model
Advantages
• Easy transition for patients
• Access to treatment history
• Works well for surveillance of
recurrent/new cancer as well
as for late effects
Challenges
• May restrict to certain diseases
• Patients may be reluctant for
transition to primary care
• May be difficult in a busy
clinical practice
Survivorship visit with treating oncology team
Survivorship NP or nurse navigator
Yearly or more frequent visits
Multidisciplinary supportive care referrals
(PT/OT, Psych/SW, Nutrition, Exercise, Pain Mx, CAM)
Multidisciplinary supportive care referrals
(PT/OT, Psych/SW, Nutrition, Exercise, Pain Mx, CAM)
DIAGNOSIS TREATMENT
Transition
visit
-TS/SCP
- 4 goals
Primary oncology team (MD +/- NP
& nurse)
EARLY
FOLLOW
UP
SURVIVORSHIP
POST-TX
FOLLOW UP
LONG TERM POST-TX
FOLLOW UP
UPENN INTEGRATED CARE MODEL
Pre-visit
assessment
Nurse Practitioner
Pre-visit
assessment
Ongoing
care visits
-4 goals of surv
Care
-Risk-stratified
transition to PCP
Survivorship Starting at Diagnosis
Minnesota Oncology
– CNS/nurse navigator
model
– Visits at baseline,
mid-cycle, EOT*
– FACT-G screen each
visit; drives
personalized care
– FACT-G plus SCP at
EOT
Outcomes
– High satisfaction (92%
*EOT = End of treatment
O’Brien and Stricker (2014).
Survivorship Models
• Common themes
– No one size fits all!
– Comprehensive needs assessment key
– Existing programs must support identified
needs
– Survivorship care plan is only a tool
– Care must be tailored to the individual
Survivorship Care Plans in Context
• “It’s not about the paper, It’s about the process”
(Melissa Hudson)
• …. a survivor care plan is only as good as the services
that it documents.
• … it is the services that a plan documents that are
so incredibly valuable to cancer survivors.
Silver, J. Physical Medicine and Rehabilitation 3, 503-506
Potential nursing roles in any cancer
care setting
• Recognize that cancer survivorship begins at the time of
diagnosis
– Address potential long-term effects at time of diagnosis
• Recognize that end of treatment is a difficult transition
period for survivors
• Assess patients for survivorship-related concerns
– Screening for psychological distress, impact on family and
relationships, practical concerns
– Assess for potential late effects, persistent symptoms
• Refer to appropriate supportive services
– Community resources
– Support groups, psychosocial support, family risk evaluation
– Specialized clinics & services
• Lymphedema, pain, physical therapy and rehabilitation
Potential nursing roles in any cancer
care setting
• Organize, coordinate, & communicate plan of
follow-up care
– Is there an approach to cancer survivorship care at
your institution?
– Be part of the team
• Develop educational & supportive programs
– Individualized education
– Group classes
– Newsletters/publications
– Patient conferences with a focus on cancer
survivorship
Conclusions
• Cancer survivorship begins at the time of
diagnosis, but is a distinct phase of the cancer
care trajectory
• Cancer survivors experience myriad unique
needs that often remain unmet
• Processes, models, programs, & tools for
improving cancer care are evolving
• Nurses are well prepared to play a critical role
in improving cancer survivorship care &
outcomes for growing #s of survivors

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Cancer Survivorship Care: Global Perspectives and Opportunities for Nurse-Led Care

  • 1. Cancer Survivorship Care: Global Perspectives and Opportunities for Nurse-Led Care Carrie Tompkins Stricker, PhD, CRNP, AOCN® Oncology Nurse Practitioner Abramson Cancer Center, University of Pennsylvania Chief Clinical Officer, On Q Health, Inc.
  • 2. Objectives • To define cancer survivorship & describe survivorship care as a distinct phase of the cancer care trajectory • To provide an overview of cancer survivorship care plans – Goals, challenges, models, & care plans • To identify and expand vision for nursing roles in cancer survivorship care
  • 3. Data source: Ries LAG, Melbert D, Krapcho M, Stinchcomb DG, Howlader N, Horner MJ, Mariotto A, Miller BA, Feuer EJ, Altekruse SF, Lewis DR, Clegg L, Eisner MP, Reichman M, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2005, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2005/, based on November 2007 SEER data submission, posted to the SEER web site, 2008. -Also:-Also: http://seer.cancer.gov/csr/1975_2008/,http://seer.cancer.gov/csr/1975_2008/, Estimated Number of Cancer Survivors in the United States From 1971 to present *14.5 million**14.5 million* as of 1/1/15as of 1/1/15
  • 4. True in Australia as well • 1 in 2 men will be diagnosed with cancer before their 85th birthday; 1 in 3 women • Cancer diagnoses expected to rise to 150,000 (from ~120,000) by 2020 • Survivorship – 2/3 of people diagnosed with cancer are likely to survive 5 years or
  • 5. Cancer survivorship worldwide • Nearly 28.7 million cancer survivors globally • in 184 countries • within five years of diagnosis (2008) • Most prevalent cancer – Breast cancer (> 5 million) • Most prevalent among women in 145 countries – http://www.iarc.fr/en/media-centre/iarcnews/2011/globocan2008-prev.php
  • 6. Cancer survivor, vs. cancer survivorship care • Cancer survivor (NCCS definition) – Anyone diagnosed with cancer, from the time of diagnosis and for the balance of life
  • 7. Cancer Survivorship Care Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C.
  • 8. Why the unique emphasis on cancer survivorship care?
  • 9. Well, finally! I thought this thing would never end!!!
  • 11. Background • Cancer survivors have unique needs – Less contact with oncology team during the survivorship period – Complex medical and non-medical issues • Symptoms, psychosocial issues, function, recovery, long term and late effects – Many needs remain unmet in current health care system – Coordination of care for cancer survivors remains problematic - Ganz PA, Casillas J, & Hahn EE (2008). Ensuring Quality Care for Cancer Survivors: Implementing the Survivorship Care Plan. Seminars in Oncology Nursing 24(3): 208-217 - Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C.; - Grunfeld & Earle, 2010.
  • 12. Symptom Burden and QOL in Survivors • ~1/3 of survivors experience symptoms after treatment equivalent to during treatment • Most common: – Fatigue – Depression or mood disturbance – Sleep disruption – Pain – Cognitive limitations
  • 13. Supportive Care Needs of Survivors Inadequately Addressed •n = 3,129 diverse cancer survivors
  • 14. Cancer survivorship: What are other issues? • Care for cancer survivors – is often not standardized or systematized – is not personalized – is poorly coordinated • Both under- and over- utilization of services is common – is highly variable in - Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C.; - Grunfeld & Earle, 2010.
  • 15. Underuse of necessary cancer-related care • Cancer surveillance – 38% of older breast cancer survivors do not receive annual mammography • Late effects surveillance • Only 14% to 26% of prostate cancer survivors at risk for osteoporosis are screened/treated • 80% of Hodgkin’s Disease survivors s/p mantle radiotherapy don’t undergo recommended echocardiograms 1. Salloum et al., 2012; 2. Schapira et al., 2000; 3.Tanvetyanon T. Cancer. 2005;103:237-241. 4. Yee EF, et al. J Gen Intern Med. 2007;22:1305-1310. Oeffinger, K.C., et al., Pediatric Blood & • Cancer, 2010. 56(5): p. 818-824.
  • 16. Under Use of Necessary Chronic Care in Cancer Survivors N=14,884 colorectal cancer survivors vs. matched controls •Cancer survivors more likely to not receive recommended chronic care (OR 1.19, 95% CI, 1.12-1.27). – E.g., follow-up care for CHF, diabetes, & recommended preventive services. •Elderly, poor, & minorities esp. at risk Earle & Neville, 2004
  • 18. Implications of Variations in & Poor Coordination of Care • Unnecessary costs • Reduced opportunity for new patient visits • Dissatisfied referring providers • Underutilization of appropriate and necessary care – Potential for delayed diagnosis and
  • 19. Cancer survivorship: Why the gaps in care? • Health care providers of survivors – Are often focused on other issues – Cannot keep up with demand – Often lack knowledge about survivorship – - Ganz PA, Casillas J, & Hahn EE (2008). Ensuring Quality Care for Cancer Survivors: Implementing the Survivorship Care Plan. Seminars in Oncology Nursing 24(3): 208-217 - Hewitt, Greenfield, & Stovall (2005). From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C.
  • 20. Oncologist Workforce Shortage Looming Erikson et al., ASCO Workforce Report, JOP, 2007 14 % increase14 % increase 48 % increase48 % increase Gap of 9.4-15.0 million visitsGap of 9.4-15.0 million visits 68% of oncologist’s visits are for care of patients68% of oncologist’s visits are for care of patients > 1 year from diagnosis> 1 year from diagnosis
  • 21. Consequences • Much cancer survivorship care must be shifted to the community & primary care – Oncologists must see new patients • Cancer survivors will increasingly shoulder burden of navigating ongoing care – self-management strategies will assume increasing importance Institute of Medicine & National Research Council, 2006;
  • 22. Opportunity! • Nurses strengths/skill sets are perfectly positioned for survivorship care – Prevention & education – Early detection – Intervention – Coordination – Promoting self-management
  • 23. Survivorship care: What are its components? • Prevention • Surveillance • Intervention • Coordination Institute of Medicine & National Research Council, 2006
  • 24. Survivorship care: What are its components? • Prevention of new & recurrent cancers, and of other late effects • Surveillance for cancer recurrence, or second cancers; assessment for medical and psychosocial late effects • Intervention for consequences of cancer & its treatment, including symptoms and medical & psychosocial problems • Coordination between specialty & primary care Institute of Medicine & National Research Council, 2006
  • 25. Nurse-led survivorship care • Definition – Delivery of evidence-based, patient-centered care focused on outcomes, delivered by APNs • Barriers – Patient perceptions – Physician (consultant) perceptions – Competing responsibilities • Solutions – Partner & establish credibility first – Set expectations from start of treatment – Share data! Gates and Krishnasamy (2009). CancerForum 33
  • 26. Evolving data on outcomes of nurse-led survivorship care • Pilot studies of U.S., Australia “end of treatment/transition visits” show: – high patient satisfaction1,3,4 – reduced patient concerns/unmet needs2,4 – improved preparedness to manage healthcare3 1.Crowley et al 2010; 2.Jagielski et al 2010; 3.Salner et al 2012; 4.Jefford et al. 2011;1.Crowley et al 2010; 2.Jagielski et al 2010; 3.Salner et al 2012; 4.Jefford et al. 2011;
  • 27. Randomized trials of nurse-led care • RCT’s of specialty nurse-led models of follow-up care (U.K., Sweden) show: – No difference in time to detecting recurrence or in overall survival5, 8 – Equivalent or superior patient satisfaction5,6,8 &QOL7,8 – Improved symptom control8 – No increase in anxiety5,7,8 – Greater referrals and liaison w/support services9 5. Beaver et al., ’09 6. M Kimman et al., 2010; 7. Kimman et al., 2011. 8. Koinberg et al.2004, 9. Faithfull et al Br J Cancer. 2001;85:1853-64.
  • 28. Global care models involving nursing • U.K. • Australia • Canada • U.S.A.
  • 29. Cancer Survivorship Care: Models • What is a “model” of survivorship care? – No broad consensus – “Involves a broad an holistic approach to follow-up care for cancer survivors, addressing multiple needs” – Models highly variable across settings – Common goal • Improving quality of care through comprehensive, coordinated, tailored follow up care M.T. Halpern et al (2015). Models of Survivorship Care.M.T. Halpern et al (2015). Models of Survivorship Care. J Oncol Pract 11J Oncol Pract 11(1).(1).
  • 30. What is the evidence for various models? • Bottom line – Extremely limited, research needed! • Technical brief prepared for AHRQ* – Only 9 studies meeting criteria • Include > 2 survivorship care components – Identified nurse-led, physician-led, survivorship care plan centered, & individual vs. group models *AHRQ = Agency for Healthcare Research and Quality M.T. Halpern et al (2015). Models of Survivorship Care. J Oncol Pract 11(1).
  • 31. U.K. – National Cancer Survivorship Initiative • Partnership between National Health Service (NHS), MacMillan Cancer Support, Department of Health – …. And many others • Focus – Risk-stratified pathways for breast, prostate, and colorectal cancer • Nurse role critical to implementation! – Special thanks to Surpal Grewal, CNS for sharing her role! http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdf
  • 32. U.K. – National Cancer Survivorship Initiative http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC1448http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC1448 1howtoguide.pdf1howtoguide.pdf
  • 33. Preliminary data on pathways from NHS improvement sites http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC14481howtoguide.pdf Critical elements for self-managed pathway •Remote surveillance, IT support •Guaranteed reaccess •Patient needs
  • 34. Nurse specialist central to self-management pathway
  • 35. U.K.: Moving survivorship earlier in the continuum http://be.macmillan.org.uk/Downloads/ResourcesForHSCPs/InformationResources/MAC1 4481howtoguide.pdf
  • 36. Australia • Thanks to Michael Jefford and Nicole Kinnane for sharing!
  • 40. Canada • Example from Ontario • Thanks to Jennifer Jones, PhD
  • 42. Wellness Beyond Cancer Program • Group sessions for patients and families post- treatment to promote self care and empowerment • A consultation service for family physicians/nurse practitioners including a rapid re-entry process • A health professional educational strategy • An evaluation framework & plan for a research agenda.
  • 43. Content of SCP 1) Disease information 2) Treatment information 3) Surveillance Plan 4) Persistent and late effects and their management 5) Symptoms to report 6) General health and wellness information Electronic solution: Medical information drawn from existing UHN databasesMedical information drawn from existing UHN databases Lives in EPR as a link to external platformLives in EPR as a link to external platform
  • 49. Models of Care – U.S. Clinical Models • Multidisciplinary • Disease specific • Consultative service • Integrated Care Model • Others – “Shared Care” model an umbrella for several Providers • MD • Oncologist • Primary care • Nurse Practitioners • Oncology • Primary care • Combined MD/NP • Nurse navigators
  • 50. Multidisciplinary Advantages • Easy for patients • Comprehensive • Good model for complex patient (brain tumors) • Common pediatric model Challenges • Resource intense • Difficult to coordinate • Possible multiple co-pays • Not everyone needs all services •Patients seen/evaluated by different providers in the context of a single clinic visit •Oncology, endocrinology, neuropsychology, neurology, social work, etc.
  • 51. Consultative Service Advantages • Serves unrestricted survivor population, outside referrals • Provides core service, tx summary/care plan • Reinforces need for primary care f/u and transition out of cancer clinic setting Challenges • Difficult to be “expert” in long term f/u issues for all diseases • Difficult to have consensus guidelines for f/u for all • Buy in from patients & multiple providers for patient referrals difficult (patient choices for PCP) One time or annual consult visit general survivorship issues provide treatment summary/care plan Referral to subspecialist, PT, nutrition, psych, etc. Establish primary care home for survivor
  • 52. Group Survivorship Care Group survivor visits (Duke) – 6 survivors per group session – Individualized TS prepared pre-visit by NP – Survivor engaged in preparing SCP – 45 minute group session followed by <20 minute post-session visit with NP – Multi-disciplinaryTrotter K. et al., 2009.Trotter K. et al., 2009.
  • 53. Disease/Treatment Specific Advantages • Focused scope of practice • Easier to make consensus guidelines for f/u • Good model for complex patients (brain tumors, HCT) • Good way to start out Challenges • Inequality • May not address survivors with greatest needs • Survivorship clinic for specific cancer type • e.g., breast, testicular, GYN, GI, Young Adults • Can be developed for psychosocial services only
  • 54. Integrated Care Model Advantages • Easy transition for patients • Access to treatment history • Works well for surveillance of recurrent/new cancer as well as for late effects Challenges • May restrict to certain diseases • Patients may be reluctant for transition to primary care • May be difficult in a busy clinical practice Survivorship visit with treating oncology team Survivorship NP or nurse navigator Yearly or more frequent visits
  • 55. Multidisciplinary supportive care referrals (PT/OT, Psych/SW, Nutrition, Exercise, Pain Mx, CAM) Multidisciplinary supportive care referrals (PT/OT, Psych/SW, Nutrition, Exercise, Pain Mx, CAM) DIAGNOSIS TREATMENT Transition visit -TS/SCP - 4 goals Primary oncology team (MD +/- NP & nurse) EARLY FOLLOW UP SURVIVORSHIP POST-TX FOLLOW UP LONG TERM POST-TX FOLLOW UP UPENN INTEGRATED CARE MODEL Pre-visit assessment Nurse Practitioner Pre-visit assessment Ongoing care visits -4 goals of surv Care -Risk-stratified transition to PCP
  • 56. Survivorship Starting at Diagnosis Minnesota Oncology – CNS/nurse navigator model – Visits at baseline, mid-cycle, EOT* – FACT-G screen each visit; drives personalized care – FACT-G plus SCP at EOT Outcomes – High satisfaction (92% *EOT = End of treatment O’Brien and Stricker (2014).
  • 57. Survivorship Models • Common themes – No one size fits all! – Comprehensive needs assessment key – Existing programs must support identified needs – Survivorship care plan is only a tool – Care must be tailored to the individual
  • 58. Survivorship Care Plans in Context • “It’s not about the paper, It’s about the process” (Melissa Hudson) • …. a survivor care plan is only as good as the services that it documents. • … it is the services that a plan documents that are so incredibly valuable to cancer survivors. Silver, J. Physical Medicine and Rehabilitation 3, 503-506
  • 59. Potential nursing roles in any cancer care setting • Recognize that cancer survivorship begins at the time of diagnosis – Address potential long-term effects at time of diagnosis • Recognize that end of treatment is a difficult transition period for survivors • Assess patients for survivorship-related concerns – Screening for psychological distress, impact on family and relationships, practical concerns – Assess for potential late effects, persistent symptoms • Refer to appropriate supportive services – Community resources – Support groups, psychosocial support, family risk evaluation – Specialized clinics & services • Lymphedema, pain, physical therapy and rehabilitation
  • 60. Potential nursing roles in any cancer care setting • Organize, coordinate, & communicate plan of follow-up care – Is there an approach to cancer survivorship care at your institution? – Be part of the team • Develop educational & supportive programs – Individualized education – Group classes – Newsletters/publications – Patient conferences with a focus on cancer survivorship
  • 61. Conclusions • Cancer survivorship begins at the time of diagnosis, but is a distinct phase of the cancer care trajectory • Cancer survivors experience myriad unique needs that often remain unmet • Processes, models, programs, & tools for improving cancer care are evolving • Nurses are well prepared to play a critical role in improving cancer survivorship care & outcomes for growing #s of survivors

Hinweis der Redaktion

  1. Between 1971 and 2007 the number of adult cancer survivors has increased dramatically…there are currently over 12 million adult cancer survivors in the US. On January 1, 2008, in the United States there were approximately 11,957,599 men and women alive who had a history of cancer of all sites -- 5,505,862 men and 6,451,737 women New citation = Howlader N, Noone AM, Krapcho M, Neyman N, Aminou R, Waldron W, Altekruse SF, Kosary CL, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Chen HS, Feuer EJ, Cronin KA, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted to the SEER web site, 2011.
  2. DATA SOURCES Incidence dataIncidence data derive from population-based cancer registries. These may cover entire national populations but more often cover smaller, subnational areas, and, particularly in developing countries, only major cities. The most important source of information on cancer incidence is the successive volumes of Cancer Incidence in Five Continents CI5 [1,2]. Incidence data are generally associated with some delay as they require time to be compiled and published, but recent information can often be found in routine reports from the registries themselves, commonly available via their websites. While the quality of information from most of the developing countries might not be of sufficient quality, this information is still of unique importance as it often remains the only relatively unbiaised source of information available on the profile of cancer.Population-based cancer registries can also produce survival statistics by following up their vital status of cancer patients. Survival probabilities [3] can be used to estimate mortality from incidence in the absence of mortality data, and to estimate cancer prevalence. Mortality dataMortality statistics are collected and made available by the WHO [4]. Their advantages are national coverage and long-term availability, although not all datasets are of the same quality. For some countries, coverage of the population is incomplete, so that the mortality rates produced are implausibly low, and in others, the quality of cause of death information is poor. While almost all the Europen and American countries have comprehensive death registration systems, most African and Asian countries (including the populous countries of Nigeria, India and Indonesia) do not. For the GLOBOCAN 2008 estimates, we benefitted from the provisional estimates of the age- and sex-specific deaths from cancer (of all types) for 2008 in each country of the world. Prevalence data1-, 3-, and 5-year prevalence is estimated from incidence estimates (for 2008) and observed survival by cancer and age group provided by cancer registries worldwide (see below). Prevalence is presented for the adult population only (ages 15 and over), and is available both as numbers and as proportions per 100,000 persons. Disability-adjusted life years (DALY)A detailed description of the data sources and the methods of estimation used to obtain the parameters required to calculate DALYs have been described elsewhere [6]. In brief, the following country- and cancer-specific sets of estimates were used in the computation of DALYs: (1) population data (source UN, see below), (2) incidence and mortality estimates from GLOBOCAN 2008, (3) estimates of the proportion cured and treated, (4) time intervals of distinct disease phases including duration of diagnosis and treatment, time to cure and to death, (5) standard life expectancy tables, and (6) disability weights. DALYs were estimated for each cancer site by sex and country. Population dataNational population estimates for 2008 were extracted from the United Nation (UN) population division, the 2008 revision [5]. The geographical definition of the regions follows the rules as defined by the UN (see the Population dictionary option). These estimates may differ slightly (especially for older age groups) from those prepared by national authorities. ReferencesParkin, D.M., Whelan, S.L., Ferlay, J., and Storm, H. Cancer Incidence in Five Continents, Vol. I to VIII. IARC CancerBase No. 7, Lyon, 2005. Curado. M. P., Edwards, B., Shin. H.R., Storm. H., Ferlay. J., Heanue. M. and Boyle. P., eds (2007) Cancer Incidence in Five Continents, Vol. IX. IARC Scientific Publications No. 160, Lyon, IARC. Sankaranarayanan R. Swaminathan R, Brenner H, Chen K, Chia KS, Chen JG, Law SC, Ahn YO, Xiang YB, Yeole BB, Shin HR, Shanta V, Woo ZH, Martin N, Sumitsawan Y, Sriplung H, Barboza AO, Eser S, Nene BM, Suwanrungruang K, Jayalekshmi P, Dikshit R, Wabinga H, Esteban DB, Laudico A, Bhurgri Y, Bah E, Al-Hamdan N. Cancer survival in Africa, Asia, and Central America: a population-based study. Lancet Oncol. 2010 Feb;11(2):165-73. World Health Organisation (WHO) Databank, Geneva, Switzerland. WHO Statistical Information System http://www.who.int/whosis United Nations, Population division. World Population Prospects, the 2008 revision. (http://www.un.org/, last accessed on 08/11/2009). Isabelle Soerjomataram, Joannie Lortet-Tieulent, Jacques Ferlay, David Forman, Colin Mathers, Donald Maxwell Parkin and Freddie Bray. Estimating and validating disability-adjusted life years at the global level: a framework for cancer. BMC Medical Research Methodology. in press METHODS The methods used to estimate the country specific burden of cancer are similar to those used in the GLOBOCAN 2002 study [1] and have been described in detail elsewhere [2]. In summary, the most recent disease rates available were applied to the corresponding population of the country in 2008. For GLOBOCAN 2008, the degree of delay in the available data was taken into account by computing predictions of the national incidence and mortality rates to the year 2008, wherever possible. Although historical trends will not always hold in the future, predictions based on relatively linear trend patterns have been shown empirically to be reasonably accurate, particularly in the short-term. Where the availability of annual data was minimal - commonly between 5 and 10 years - simple time-linear models were fitted to these data to predict incidence and mortality for 2008 [3]. Where data series spanning at least 15 years were available, predictions based on age-period-cohort modeling were utilised [4].Sex- and cancer-specific predictions of the national incidence and mortality rates were performed when at least 50 cancer cases or cancer deaths (all ages) were recorded per year for short-term predictions, and when at least 100 cancer cases or deaths (all ages) were recorded per 5-year period for NORDPRED [4]. Otherwise, the rates for 2008 were estimated as the annual average for the most recent 5-year period available.
  3. Physical problems (86%): Energy, concentration, sexual dysfunction, neuropathy, pain were most highly endorsed Emotional concerns (93%): Fear of recurrence, depression, grief/identity issues, concerns about family members risk Financial &amp; job related concerns (58%): 70% of those in school reported school-related problems 40% experienced employment issues Debt issues (33%); insurance issues (21%)
  4. Quality is highly variable, few pathways Care is not well coordinated Work force shortages will worsen
  5. Cancer surveillance Only 55.0% of n = 2297 colorectal cancer survivors received recommended colonoscopies (Salloum et al., 2012) 38% of older (&amp;gt; 65) BC survivors did not receive annual mammography after diagnosis (Schapira et al., 2000) Late effect surveillance Tanvetyanon T. Cancer. 2005;103:237-241. 2. Yee EF, et al. J Gen Intern Med. 2007;22:1305-1310. 3. Chen Z, et al. Cancer. 2005;104:1520-1530. Supportive care/rehab/psychosocial care Cancer rehabilitation services 66% of 244 oncology outpatients screened positive for functional problems Only 2 rehabilitation referrals generated 6% of clinician notes referred to functional problems Psychosocial care - Need to look up this literature
  6. Quality is highly variable, few pathways Care is not well coordinated Work force shortages will worsen
  7. CH Jagielski poster at Biennial 2010; Salner et al poster at APOS 2012. All RCTs were UK-based models except Koinberg et al (Sweden) ALL RCTs were in breast cancer except Moore et al (which was combined telephone and phone for LUNG cancer) All RCTS were telephone based except for Moore and Koinberg
  8. There are several models of care that have been piloted across the country and I outlined them here for you….
  9. Community hospital approaches: 1) Lancaster General Hospital (PA) Nurse navigator model Introduce survivorship concept at diagnosis Prospectively prepare treatment summary (TS) Provide TS &amp; SCP at end of treatment visit Social worker telephone follow-up Address addt’l concerns, connect w/resources 2) Minnesota Oncology CNS/nurse navigator model Visits at baseline, mid-cycle, end of treatment (TS/SCP at EOT)