advancing patient-centered workshop
TRANSCRIPT
March 15, 2021Mandi Pratt-Chapman, PhD
Advancing Patient-Centered Cancer Survivorship Care Workshop
Michigan Inter-Tribal Council Session I
Pre-Workshop Survey
https://is.gd/SurvivorshipWorkshop
Please complete the pre-workshop survey as we wait for everyone to join. You can access the survey at:
Photo credit: Green Chameleon, Unsplash.com
Agenda & Housekeeping Agenda11:00 a.m. Pretest & Forumbee sign up
11:10 a.m. Opening prayer and blessing
11:15 a.m. Welcome, Agenda, Icebreaker
11:30 a.m. Progress and Opportunities in Cancer Survivorship
12:00 p.m. Break
12:05 p.m. Small Group Activity: Assessment
12:30 p.m. Group Report Out
12:55 p.m. Large Group Activity: Prioritization and Discussion
1:20 p.m. Wrap-up and Evaluation
Ice Breaker
If you could pick up a new skill in an instant, what would it be?
Acknowledgments & Disclosures
The development of this slide deck was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EA #12744).
Learning Outcomes
• Review progress in cancer survivorship and available resources
• Discuss how COVID-19 affected cancer survivors and care providers
• Consider health disparities in cancer survivorship relevant to ITCM
• Select metrics for patient-centered care
Ground Rules for Discussions• Be present, keep video on• Mute your line unless speaking• Put away cell phones or other distractions • Only one person talk at a time• Be open, honest and respectful • We want to hear from everyone: If we do not
hear from you, we may call on you to ask for your thoughts
• Permission requested: I may need to interrupt at times to keep moving forward
Presentation
Overview of Cancer Survivorship
What is Cancer Survivorship?
Physical, psychosocial and economic issues
Late effects, second cancers and quality of life
Focus on an individual
diagnosed and living with and beyond cancer
Who are Cancer Survivors?
An individual is considered a cancer survivor from the time of diagnosis through the balance of his or her life
There are many types of survivors, including those living with cancer and those free of cancer
Quality of Life
Psychological Well-BeingPhysical Well-Being
Social Well-Being Spiritual Well-Being
• Functional status• Fatigue and sleep• Overall physical health• Fertility• Pain
• Control• Anxiety• Depression• Fear of recurrence• Cognition/attention
• Family distress• Roles and relationships• Affection/sexual function• Appearance• Isolation• Finances/employment
• Meaning of illness• Religiosity• Transcendence• Hope• Uncertainty• Inner strength
Cancer Survivor Needs
Ferrell & Hassey Dow, 1997
• Barriers to follow-up care and surveillance
• Higher risk of developing second primary cancer and chronic medical conditions
• Lack of access to insurance
• Poorer physical and mental health
Disparities in Survivorship
AIAN Disparities from ITCM CCC Plan
• AIAN binge drinking (22.8% v. 17.5%) and heavy drinking (8.6% v. 4.9%) higher than general population
• Current smokers (34% to 72%) higher than general population (23%)
• Higher cancer incidence rate for AIAN
• Younger mean age at diagnosis for all cancers: 56 (AIAN) v. 62.23 yrs (all races)
ITCM, 2018
Considerations for QOL for Survivors
• Physical, emotional, spiritual and practical support assets: family members, friends, other cancer patients, traditional healers, tribal community health programs and services, health care providers
• Native cancer survivors often get lost in the fragmented system have difficulty navigating through the health care system
• Cancer treatment facilities are often far away and there is little money available for food, gas and lodging expenses
• Cancer treatment is expensive and contract health care services may be limited or a patient is ineligible
• Cancer survivors and their caregivers are in need of more social, mental, spiritual support
• Faith, spirituality and traditional methods are not always understood or accepted by cancer care providers
• Cancer survivors have difficulties with missing work and running out of PTO
ITCM, 2018
Recommendations From Cancer Patient to Cancer Survivor: Lost in Transition
Establish Cancer Survivorship as Distinct Phase
of Care
Provide Survivorship Care Plan
Use Evidence-Based Clinical
Guidelines
Develop Quality Survivorship Care
Measures
Demonstrate and Test Survivorship Care Programs
Include Survivorship in Comprehensive
Cancer Control Plans
Provide Educational Opportunities to
Health Care Providers
Access to Affordable Health Insurance
and Address Employment Issues
Expand Funding for Survivorship
Research
NAM, 2005
Survivorship Care Plan
Treatment Summary
Follow-up Plan
Survivorship Care Plan
• Includes treatment summary and follow-up plan • Serves as a communication tool between providers as
well as between providers and patients• Numerous templates are available
National Academy of Medicine
Recommendation
National Comprehensive Cancer Network (NCCN)
• By Topic:• Anthracycline-induced
cardiac toxicity• Anxiety and depression• Cognitive function• Exercise• Fatigue• Healthy lifestyles• Immunizations and
infections• Menopause-related
symptoms• Pain• Sexual function
(female/male)• Sleep disorders
American Society of Clinical Oncology (ASCO)
• By Topic:• Anxiety and depression• Cardiac dysfunction• Chronic pain• Fatigue• Fertility preservation• Neuropathy• Palliative care
• By Cancer Site:• Breast (ASCO/ACS)
American Cancer Society (ACS) Survivorship Care
Guidelines for Primary Care Providers
• By Topic:• Holistic:
• Care coordination• Health promotion• Long-term and late effects• Nutrition and physical
activity• Screening• Surveillance
• By Cancer Site:• Breast (ACS/ASCO)• Colorectal• Head and neck• Prostate
Cancer Survivorship Clinical Practice Guidelines
National Academy of Medicine
Recommendation
Inclusion of Cancer Survivorship in Cancer Control Plans
National Academy of Medicine
Recommendation
CCC Cancer Survivorship Goals
Most Common Least CommonRaising Awareness Employment-related
concernsSurvivorship Care Plans Developing/ Implementing
Quality MeasuresHealthcare Professional Capacity
Investments in Research
Models of Coordinated Care
Mollica et al. 2020
ITCM Cancer Survivorship Goals
Most Common Least CommonRaising Awareness Employment-related
concernsSurvivorship Care Plans Developing/ Implementing
Quality MeasuresHealthcare Professional Capacity
Investments in Research
Models of Coordinated Care
ITCM, 2018
Improve Cancer Survivors’ Quality of Life
By June 29, 2022, increase % of cancer survivors who self-report favorable health status by 15% among the target population.
1. Provide information to survivors, providers and the public about cancer survivorship and their needs
2. Educate tribal provider’s on survivor’s needs and available resources
ITCM, 2018
Quality Survivorship Care Measures
Quality Care
National Academy of Medicine
Recommendation
Patient-Centered Survivorship Care Framework
Patient-Centered Survivorship Care Framework
Patient-Centered Survivorship CareTalked about getting emotional/social support to manage relationship with partners and family
Discussed late/long-term side effects of cancer and treatment
Clinician and patient set goals to help manage follow-up care and improve health
Shared decision making on transitioning from oncologist to PCP
Clinician explained reason for medical tests related to follow-up care after treatment
Clinician offered to arrange referrals and physicians visits/tests needed
Had regular access to exercise and physical activity services
Patient obtained help understanding insurance coverage options for medical services
Patient can access own medical through EHR to see lab/test results, recommendations for care
Checkpoint•Do these metrics for patient-centered survivorship care resonate with you?
•Is there anything missing?
Photo credit: Jaime Handley, Unsplash.com
COVID and Cancer Survivorship 2020
• Survey fielded in November 2020
• Survivors• U.S. (n=550)• Michigan (n=33)• AIAN (n=14)
• Providers: • U.S. (n=607)• Michigan (n= 11)• AIAN (n=10)
Photo credit: Jakayla Toney, Unsplash.com
Changes to cancer care during the pandemic as reported by healthcare providers (%)
40
10
20
80
64 64
55
100
0
20
40
60
80
100
120
Treatment appointmentscanceled or delayed
Survivorship appointmentscanceled or delayed
Changes to treatment plan Changes to visitor policies
Perc
enta
ge
AIAN Michigan
Survivor Behavioral Changes since the pandemic: AIAN and Michigan (%)
0
10
20
30
40
50
60
70
80
90
100
More positive More healthychoices
Worse healthychoices
Drinking alcoholmore
Using moredrugs
Smoking/vapingmore
Domesticviolence
% o
f res
pond
ents
AIAN (N=14) Michigan (N=33)
Survivor-reported health changes since the pandemic started (%)
AIAN/PI (N=14)
Michigan (N=33)
Better No Change
Worse Better No Change
Worse
Physical Health
0 28.6 50.0 18.2 36.4 27.3
Emotional Health
0 35.7 42.9 6.1 33.3 45.5
Spiritual Health
14.3 14.3 35.7 15.2 48.5 18.2
Sexual Health 0 42.9 35.7 3.0 51.5 27.3
Relationship with partner
7.1 50.0 14.3 15.2 45.5 15.2
Relationship with friends/family
21.4 28.6 28.6 15.2 48.5 24.3
Finances 7.1 35.7 35.7 6.1 45.5 30.3
Survivor changes in Employment since the pandemic: AIAN and Michigan (%)
0
5
10
15
20
25
30
35
40
45
50
Cannot work(illness or
caregiving)
Able to workfrom home
Frontline worker Essential worker Furloughed Reduced hours Lost job
% o
f res
pond
ents
AIAN (N=14) Michigan (N=33)
Survivor Experiences during the pandemic (%)
AIAN (N=14) Michigan (N=33)
I feel anxious about getting COVID 35.7 33.3
I have been diagnosed with COVID-19 7.1 3.0
I worry about possibly infecting others 14.3 12.1
I am concerned about a family member or close friend getting or dying from COVID-19
50.0 51.5
A household or family member of mine has died from COVID-19
7.1 6.1
I worry about the possibility of dying from COVID-19 35.7 30.3
I feel I have no control over how COVID-19 will impact my life
28.6 18.2
Survivor mental health experiences during the pandemic (%)
0
5
10
15
20
25
30
35
40
45
50
Sad/Depressed Negative/Anxious Changes in sleep Changes in eating Difficultyconcentrating
Lonely or isolated
% o
f res
pond
ents
AIAN (N=14) Michigan (N=33)
Pre-treatment visits appropriate for telehealth (%)
AIAN Provider
AIAN Survivor
MI Provider MI Survivor
New oncology appointment or consultation
10.0 57.1 45.5 33.3
Discussions about imaging or lab results
50.0 50.0 54.6 63.6
Chemotherapy education 30.0 57.1 63.6 51.5
Genetics counseling 30.0 42.9 81.8 39.4
Plastic surgery education 30.0 21.4 27.3 24.2
Clinical trial recruitment 0.0 28.6 54.6 39.4
Second opinion 20.0 35.7 36.4 33.3
Financial - 50.0 - 51.5
None of the above 0.0 14.3 0.0 3.0
Follow-up visits are appropriate for telehealth (%)
AIAN Provider AIAN Survivor MI Provider MI Survivor
Surgical wound evaluation (with video)
20.0 14.3 0.0 12.1
Assessment of a symptom or medical concern related to cancer and treatment
40.0 50.0 100.0 60.6
Management of symptoms or medical concerns related to cancer and treatment
60.0 71.4 81.8 51.5
Comorbidity management 60.0 42.9 63.6 24.2
Clinical trial visit/management 0 21.4 27.3 15.2
None of the above 10.0 7.1 0.0 15.2
Supportive care visits appropriate for telehealth (%)
AIAN Provider
AIAN Survivor
MI Provider MI Survivor
Nutrition consultation 100.0 64.3 100.0 63.6
Financial consultation 70.0 - 100.0 -
Tobacco/smoking cessation 90.0 57.1 100.0 51.5
Occupational, physical, or speech therapy
20.0 21.4 27.3 18.2
Lymphedema care 0.0 7.1 9.1 9.1
Plastic surgery 0.0 0.0 9.1 6.1
Patient navigation support 50.0 42.9 100.0 48.5
Social work or mental health 70.0 64.3 100.0 45.5
Support groups 50.0 57.1 90.9 45.5
Supportive care visits are appropriate for telehealth (cont.) (%)
AIAN Provider AIAN Survivor MI Provider MI Survivor
Fertility visit 30.0 7.1 45.5 9.1
Sexual health 40.0 21.4 36.4 12.1
Traditional healer 40.0 28.6 9.1 21.2
Spiritual care 30.0 42.9 72.7 36.4
Palliative care 20.0 14.3 18.2 6.1
End-of life care 0.0 14.3 9.1 6.1
None of the above 0.0 0.0 0.0 3.0
Assessing Your Progress in Cancer Survivorship as a Coalition
Report out
ExcellentAbove
average AverageBelow
averageVerypoor
Not sure
Cancer survivors receive information and resources about expectations post-treatment
There is meaningful communication between clinicians and cancer survivors
Cancer survivors have a medical home
Clinicians support cancer survivor engagement and empowerment
Clinicians are supportive and prepared
There is care coordination and transitions across care providers
Cancer survivors have the full spectrum of care
Cancer survivors have health insurance and practical life support
Cancer survivors receive emotional and social support
Prioritizing Survivorship Goals for Improvement
Low Need/High Feasibility High Need/High Feasibility
Low Need/Low Feasibility High Need/Low Feasibility
Feasibilityhigh
low
Need highlow
Report out
Resources
Resources• ACS CCC Resources
• ACS “Risk Factors in Cancer Survivors Cancer Plan
Tip Sheet”
• GW Cancer Center’s Survivorship Resources List
• Clinical Practice Guidelines Resource List
• Coalition CoC Guide and related Zoom meet up
notes
Resources Page
http://bit.ly/NCSRCToolkitFull gwccacademy.com http://bit.ly/ProviderChecklist2019
http://bit.ly/AdvancingCancerSurvivorshipCareToolkit2019
https://bit.ly/2020CancerSurvivorshipToolkit
http://bit.ly/NCSRCToolkitPatients
CCCNP Survivorship Tip Sheet
https://smhs.gwu.edu/cancercontroltap/resources/cancer-plan-tip-sheets
• HPV Vaccination
• Colorectal Cancer
• Tobacco Control
• Addressing Risk Factors for
Cancer Survivors
http://bit.ly/AdvancingSurvivorshipPlanningGuide2019
http://bit.ly/AdvancingSurvivorshipImplementationTools2019
Using Resources to Advance CCC Goals
Wrap-Up
1. What went well?
2. What could have been done differently?
This Photo by Unknown Author is licensed under CC BY
Next Steps
• March 17, 2021, 11 am – 1:30pm ET
• Session II Activities
– Root cause analysis of barriers
– Planning for Action
• Call to Action
References
American College of Surgeons. (n.d.). Commission on Cancer. Retrieved from https://www.facs.org/quality-programs/cancer/coc
Ferrell, B., Dow, K.H. (1997). Quality of Life among Long-Term Cancer Survivors. Oncology, 11(4), 565-71.
Centers for Disease Control & Prevention. (n.d.). National Comprehensive Cancer Control Program (NCCCP). Retrieved from https://www.cdc.gov/cancer/ncccp/index.htm
Institute of Medicine and National Research Council. (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: The National Academies Press.
Mead K., Raskin S., Arem H., et al. (2019). Evaluating Different Types of Cancer Survivorship Care. Washington, DC: Patient‐Centered Outcomes Research Institute (PCORI). https://doi.org/10.25302/7.2019.IH.12115255.
Mollica, M.A., Falisi, A.L., Geiger, A.M., Jacobsen, P.B., Buchanan Lunsford, N., … Nekhlyudov, L. (in press). Survivorship Objectives in Comprehensive Cancer Control Plans: A Systematic Review. Journal of Cancer Survivorship.
Connect with the GW Cancer Center
Follow us on Twitter: @GWCancerwww.gwcancercenter.com
Sign-up for the GW Cancer Center’s Patient Navigation and Survivorship E-Newsletter: bit.ly/PNSurvEnews
Sign-up for the GW Cancer Center’s Cancer Control Technical Assistance E-Newsletter: bit.ly/TAPenews