3. Survivorship
NCI definition:
“In cancer, survivorship focuses on the
health and life of a person with cancer
post-treatment until the end of life.”
Source: National Cancer Institute Dictionary of Cancer Terms. Retrieved
from: http://www.cancer.gov/dictionary?cdrid=445089
5. Breast Cancer Survivor Focus
Group: Washington, DC
• Major barriers: physical issues, practical
life support, psychological and emotional
support, interaction with clinicians
“We need to know
what to expect.”
6. Survivor Barriers
• Ongoing issues with late effects
• General physical issues
Physical issues
• Navigating financial, insurance and
employment issues
Practical life
support
• Increased access to psychosocial
resources
Psychological &
Emotional Support
• Sensitivity from providers
• Quality of communication
Interactions with
Clinicians
7. Effects for Breast Cancer Survivors
• Cardiac issues
• Fatigue
• Lymphedema
• Musculoskeletal
symptoms
• Joint pain
• Chronic pain,
including
neuropathy
• Reproductive and
sexual issues
• Recurrence, new
breast cancers or
other cancers
• Skin changes (due
to radiation)
• Anxiety
• Depression
• Cognitive dysfunction
• Decreased satisfaction with
life
• Fear of recurrence
• Poor body image
• Post-traumatic stress disorder
• Employment and financial
concerns
• Need for post-treatment
education
9. Evaluating Cancer Survivorship
Care Models: Project Overview
• Goal: Compare effectiveness of cancer
survivorship models of care on patient-
centered outcomes
Compare care
models
according to
survivor
needs
Identify
survivor
needs and
gaps
Identify
current
survivorship
practices
10. Completed Project Activities
Secondary data
analysis
Focus groups
with survivors
Environmental
Scan of
Commission on
Cancer-
accredited
programs
National Cancer
Survivor Survey
11. Focus Groups
• Focus groups conducted in California,
Montana, Illinois, South Carolina, New
Jersey and Washington, DC
• Survivors of non-metastatic breast,
colorectal or prostate cancer, 1-5 years
post diagnosis, had completed active
treatment and were diagnosed with
cancer at 18 years or older
12. Identified Needs
• Psychological Support
• Social Support
• Support to empower
Patients
• Information and
Resources
• Productive interaction
with clinicians
• Coordination of and
transitions in care
• Communication with
clinicians
• Provision of full
spectrum of care
• Medical home
• Practical life support
13. CPNN Connection
• Do your patients experience similar
issues?
• What do you do to help them navigate
these barriers?
• How can we disseminate information
from our project to your patients?
Good afternoon everyone. Thank you for attending today’s CPNN meeting. Thank you also to Adrienne, who invited me to talk about survivorship in Washington, DC. I’m the project manager for a study called Evaluating Cancer Survivorship Care Models here at the GW Cancer Institute.
I have two objectives for today’s discussion. First, I’ll define cancer survivorship and the issues faced by many survivors. Second, I’ll describe challenges faced by survivors in DC with a focus on breast cancer survivors. As you all know, patients in our area face a lot of health disparities, and these persist even after treatment has ended. I’ll provide information gathered both from the project I work on as well as other studies and surveys, which will be reported as part of a DC survivorship gap analysis coming out of the GW Cancer Institute.
There are many definitions of cancer survivorship. Some people who have been diagnosed with cancer consider themselves survivors after receiving their diagnosis. Others may not call themselves survivors until five years after treatment has ended. Some people may not call themselves survivors, they may call themselves divas, thrivers or warriors. In the Office of Cancer Survivorship here at the GW Cancer Institute, we use the National Cancer Institute definition, which is:
“In cancer, survivorship focuses on the health and life of a person with cancer post treatment until the end of life. It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.”
PAUSE HERE. WHO HAS WORKED WITH SURVIVORS?
As I mentioned on the previous slide, survivors may experience physical, psychosocial and economic issues even after treatment concludes.
Survivorship needs may fall into one or more of the categories listed here. Can anyone name an example for one of these challenges that they have helped a patient navigate during or after treatment?
Last fall, we held a focus group in the DC area for women who survived breast cancer. The average age of participants was 51 years old. 67% reported they are black or African American and 27% reported they are Hispanic/ Latino.
I put a quote on this slide to highlight something that was said in many of our focus groups. “We need to know what to expect.” Survivors may not feel like they have a clear roadmap to their lives post-treatment.
The breast cancer survivors who attended our focus group reported many barriers and ongoing issues with late effects of treatment, including lymphedema, neuropathy and intimacy problems. General physical issues after treatment were also mentioned, including hot flashes and joint pain.
Participants in our focus group stated wanting more support navigating financial, insurance and employment issues as a result of their treatment. Many described having problems with insurance coverage for treatment options and not being able to return to work secondary to the late/side effects of treatment.
Participants reported wanting increased access to psychosocial resources to deal with issues such as body image, stress and anxiety, self-confidence, mental health, and spiritual support.
Participants prioritized positive interactions with their clinicians, specifically more sensitivity from their health care providers. Additionally, participants often felt clinicians communicated poorly with them, especially once treatment had ended.
This slide draws from a comprehensive review of studies on breast cancer survivors’ health needs. This is a list of common late and long-term physical effects, as well as practical concerns and informational needs for breast cancer survivors.
As you can see, the women in our focus group face many of the issues listed here. These issues are also mentioned in an national survivor survey conducted by LIVESTRONG in 2010; the 37 respondents from the DC area reported at least one major physical concern and one major medical concern. The most common physical concerns expressed among these DC area survivors were poor concentrating, low sexual functioning, lymphedema, and low energy. Worry, grief, and concern over appearance and identity were the most common emotional concerns indicated by survivors. 75% experienced practical concerns, such as debt and health insurance.
Additionally, a 2013 national survey by the GW Cancer Institute explored adult survivors’ needs and preferences for education related to post-treatment concerns. The respondents included 18 breast cancer survivors who received treatment in DC, the majority of whom were diagnosed within the last 3 to 5 years. Sixty-one percent of the DC-area respondents indicated that the medical and physical effects of cancer and nutritional health recommendations for survivors would be helpful topics to hear about after completing treatment.
After treatment has ended, survivors still need access to post-treatment care. In the 2013 Best Practices for Cancer Survivor Education Programming Survey for Adult Survivors survey, nearly all of the DC breast cancer survivor respondents indicated that an oncologist, not a primary care doctor, currently manages their follow-up care. 42% indicated that they did not feel ready to transition back to primary care. With regard to non-clinical resources, over half have engaged in a physical activity program since ending their treatment, and 39% sought the help of a physical therapist.
Survivors experience care delivery very differently, as well. Of the 15 breast cancer survivor focus group participants in Washington, DC, five had not received a follow-up care plan or treatment summary, one received a follow-up care plan but not a treatment summary, four received just a treatment summary but no follow-up care plan, and only three received both a treatment summary and a follow-up care plan.
When asked about desired preferences and improvements, the DC breast cancer survivor focus group participants identified the need for more positive interactions with clinicians as a key component to improved survivorship care delivery.
That’s where the survivorship project I work on comes in. This is our Evaluating Cancer Survivorship Care Models project in a nutshell. We seek to provide information to help clinicians, survivors, payers and others make decisions. One of our priorities is patient-centered outcomes, which are the outcomes that are most important to patients. Just over a year ago, we received funding from the Patient-Centered Outcomes Research Institute for this project. PCORI strongly emphasizes connecting with stakeholders and disseminating information to them.
A key component of how we operate is our 18-member Advisory Board, which is chaired by a local cancer survivor who serves as a senior advisor to the research team. The Advisory Board includes survivors, survivor advocates, clinicians, health care professionals and advisors from stakeholders across myriad facets of cancer care, including our study partners: the Cancer Support Community, LIVESTRONG, the Commission on Cancer, and the American Cancer Society. These organizations are critical to the success of the project.
Here is what we’ve done so far with the Evaluating Cancer Survivorship Care Models project. Our mixed methods approach includes:
a secondary analysis of existing data from 4 national surveys to identify survivor needs and gaps in care (n=9,029)
focus groups with cancer survivors in six sites across the country (N=169)
an environmental scan of existing Commission on Cancer-accredited programs to identify current clinical survivorship care practices (n=606) and
a national survey of cancer survivors (N=1,278) to inform development of Patient-Prioritized Quality of Care Measure, which assess outcomes identified as most important by survivors.
Our research team at the George Washington University spent the past year developing a patient-prioritized index based on results from the first phase to identify services and components of care that patients equate with high quality survivorship care. Right now we’re launching a Comparative Effectiveness Research study with up to 45 Commission on Cancer-accredited survivorship programs , in which we will compare the effectiveness of survivorship strategies or models on patient-centered outcomes identified by survivors during the project activities you see listed here. Down the road, we plan to:
Provide recommendations on survivorship care delivery best practices
Develop tools for improving survivorship programs and care delivery
Broadly disseminate findings to a variety of stakeholders, including clinicians, survivors, policymakers and others
Here’s some more information about the focus groups. We piloted them in Washington, DC and then conducted them across the country in California, Montana, Illinois, South Carolina and New Jersey. Here in DC, we recruited participants through a snowball effect by asking our local network of contacts to share this opportunity. Nationally, we conducted our focus groups through the Cancer Support Community. We met with adult survivors of non-metastatic breast, colorectal or prostate cancer who were 1-5 years post diagnosis and had completed their active treatment. There were 169 focus group participants in total: 66 breast cancer, 58 prostate cancer and 45 colorectal cancer survivors.
As illustrated by the data gathered from survivors in the DC area, survivors want to be able to better manage their care and improve physical, psychological and social outcomes. The women we met with in DC identified similar needs to our national pool of focus group participants. Here is a list of ten topics mentioned by survivors throughout our national focus groups.
It is clear that the health care system is not meeting the needs of survivors, and the problems they encounter interfere with their ability to improve their health. So if we can improve survivorship care so that it meets the needs of patients as explicitly identified by survivors, then they will be better able to improve those outcomes. The Evaluating Cancer Survivorship Care Models study outcomes indicate three major domains of improving survivorship care:
Supportive health and wellness systems
Improved management of physical, psychological and social outcomes
Productive partnerships between empowered patients and their health care providers
Reminder: three major domains of improving survivorship care:
Supportive health and wellness systems
Improved management of physical, psychological and social outcomes
Productive partnerships between empowered patients and their health care providers
