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Let's Discuss - Cancer Caregiving in the Community - R2R November 2016 Cyber Seminar

Content on this page is provided for reference purposes only. It is no longer maintained and may now be outdated.

Since our November cyber seminar focuses on cancer caregiving in the community, we want to go ahead and start the conversation about what's being done in this area currently!


Caregivers have too often been absent from studies and conversations surrounding palliative care and cancer survivorship—a problem that requires the help and support of researchers, clinicians, and practitioners. So how do we make sure that we are paying attention to caregivers, and what does that look like to you? 


Please feel free to share your experiences and the work you do, discuss the state of the field and where you think it’s headed, or post questions for the presenters and other community members. We look forward to reading your responses!



from the R2R team




I am excited to see the growing support for caregivers.  With the anticipated expansion in funding for cancer research, it appears that such attention is timely. I would like to make a couple of points.  We had an NCI grant to develop and test a computer based system to support caregivers of lung cancer patients.  The results were exciting (reduce symptom distress for patients and reduced burden for caregivers as well as an unanticipated 30+% increase in longevity of the patient. Unlike most of our work, it was not aimed at patients but at the caregiver directly.  It had a wide variety of services: e.g. information on caregiving, decision support tools, health status monitoring for patients and caregivers, alerts to the clinical team when the caregiver noticed something that providers wanted to know about (e.g. pain over 7 on a 0-10 scale) and bereavement.


It is this last service that I want to address here.  The fact is that many cancer patients still die. That means the family will be going through great stress for some time after the patient’s death.  I believe we have a moral responsibility to maintain support for a period after the death.  In our lung cancer study we offered a bereavement service that continued until 13 months after the patient death  (to get them past the first anniversary of the death). Prior to death the program (CHESS-Lung Cancer) helped caregivers prepare for death and afterwards provided means to secure peer support and various tools and tips to help them cope with the stress of this period.


But much more needs to be done.  CHESS was only one way to support caregivers.  Others can employ sensors to monitor status (e.g. sleeplessness) or to scraping to find community events that may distract the former caregiver, etc. Moreover, we need to deeply understand (much better than we have) the needs and assets that caregivers have and build systems to meet those needs in part by using the assets they already have.  This understanding is critical to developing systems that really make a difference.


Gustafson, D. H., McTavish, F. M., Chih, M. Y., Atwood, A. K., Johnson, R. A., Boyle, M. G., Levy, M. S., Driscoll, H., Chisholm, S. M., Dillenburg, L., Isham, A., & Shah, D. (2014). A smartphone application to support recovery from alcoholism: A randomized controlled trial. JAMA Psychiatry, 71(5), 566-572. PMCID: PMC4016167



We are delighted that R2R is

We are delighted that R2R is highlighting the important work of coalitions and others in supporting cancer caregivers.  The Research-tested Intervention Programs (RTIPs) database lists a number of evidence-based interventions that can strengthen your efforts and perhaps help you initiate a new program.

FOCUS program:

Family-based Interventions (The FOCUS Program) for Men with Prostate Cancer and their Spouses/Partners. Designed to enhance the quality of life of individuals diagnosed with prostate cancer and their caregivers during all phases of the illness. (2007)

Study on implementation of program:

BRIGHT ideas:

Bright IDEAS: Problem-Solving Skills Training. Designed to help reduce the emotional distress in mothers of children recently diagnosed with cancer. (2005)

FACE-TC program:

Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC). Designed to enhance the quality of life for cancer survivors and their caregivers. (2013)

The Touch, Caring, and Cancer program:

The Touch, Caring and Cancer Program. Designed to enhance the quality of life for cancer survivors and their caregivers. (2013)

Surviving Cancer Competently Intervention Program (SCCIP):

Designed to help individuals and their caregivers enhance their skills for coping with cancer. (2004)

The RTIPs website is a searchable database of evidence-based cancer control programs that provides program planners and public health practitioners easy and immediate access to: 1) programs tested in a research study, 2) publication(s) of the study findings, and 3) program products or materials used with a particular study population in a specific setting. Given that the programs on this site are based on evidence derived research studies, they may be particularly effective in serving the populations and communities in the settings in which they were originally tested.

I am delighted to follow up

I am delighted to follow up on this discussion with some exciting news.

The Cancer Support Community (CSC) last week released a research report that found the scarcity of communication between patients and their care team about cost-of-care resulted in financial toxicity for patients living with cancer. In addition, nearly half (47 percent) of patients are identified as at risk for clinically significant levels of depression.

Key Findings from the report: 

  • 93 percent of patients said quality of life is a very important factor when weighing treatment options
  • 73 percent of patients reported not discussing the cost of care with their care team
  • 43 percent of patients noted lack of transportation as an obstacle stopping them from participating in a clinical trial
  • 30 percent of patients surveyed said they depleted their savings because of treatment costs

Insight into the Patient Experience: Cancer Experience Registry Report 2017 is the second report published by CSC’s Research and Training Institute using its repository of clinical data from the Cancer Experience Registry that includes over 12,000 patients and caregivers of 45 cancer types. 

Traditional big data helps us personalize treatment, but when you do not account for the patient’s attitudes, beliefs, and behaviors it can derail the entire treatment plan leading to poor quality of care and patient outcomes.

This report will help the patient and his or her care team identify areas where they can work together to improve communication. Furthermore, the tremendous growth of the Registry demonstrates that patients and caregivers want to join and share their cancer experience.

Along with the Insight report, CSC is releasing data from 10 Specialty Registries to identify the unique challenges of each cancer diagnosis including patients with breast cancer, chronic lymphocytic leukemia, chronic myeloid leukemia, lung cancer, melanoma, metastatic breast cancer, multiple myeloma, prostate cancer, and stomach (gastric and gastro-esophageal) cancer, as well as caregivers.