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Written by guest blogger, Lee Jones. Lee is a stage IV survivor and member of our RATS program.

This blog gives an example of the work that research advocates can do to help support cancer patients and survivors. Cancer research is about much more than drug trials, and after oncologists and surgeons have done their best to provide treatments, this kind of research helps survivors to find better ways to adapt to the “new normal.”

The Role of the Research Advocate

Research advocates can play any number of roles to support and enhance cancer research. Fight Colorectal Cancer’s Research Advocate Training and Support (RATS) program is a great way to get started in research advocacy—it’s how I got started.

Over several blogs I’ll talk about some of the ways you might be able to get involved with cancer research advocacy based on the work I’ve been doing in the several years since I joined the RATS program. In this blog I’ll focus on one of those ways: partnering with researchers to help them design and implement non-drug-related research studies that better meet the needs of cancer patients and survivors. In this way, we expect to be able to better enroll participants and have a greater impact on the quality of life of cancer patients and survivors.

Though I’m a stage IV colon cancer survivor (diagnosed in March 2004), the work I do as a research advocate on the Survivorship Committee of the SWOG Cancer Research Network (and other organizations) is intended to improve the quality of life and health of survivors of every cancer type. 

SWOG disease-specific committees, like Lung and GI, focus on treatments for specific cancer types. A number of general committees, such as Survivorship, Palliative Care, and Recruitment and Retention, work together with disease-specific committees when appropriate. 

My Experience Working with Clinical Trial Research

I’ve been involved with two studies for breast cancer survivors and recently became involved in a study to improve the quality of life (QOL) for rectal cancer survivors. At SWOG, every trial and study has a research/patient advocate integrally involved with the study team all the way from the concept, through design and implementation, to completion and reporting of the findings. We are part of the presentation to the SWOG executives who have to approve every study design before it is prepared for submission to the National Cancer Institute (NCI) for funding.

Why Do We Need a Study to Improve QOL for Rectal Cancer Patients and Survivors?

Rectal cancer patients and survivors who undergo rectal surgery, with or without a temporary or permanent ostomy, can experience a number of life-changing symptoms. These symptoms can include frequent and erratic bowel movements, fecal incontinence, soiling, gas, bloating, and alternating diarrhea and constipation. 

These symptoms can lead to reduced social activities, poor social well-being, and overall reduced quality of life (QOL). To deal with these symptoms, patients and survivors often try to make changes to their diets, frequently without success and possibly reducing their nutritional intake, risking their overall health, and failing to meet the nutritional guidelines for cancer survivors.

Diet and Nutrition May Be Key

Preliminary research indicates that diet modification was the most consistently reported self-care strategy used by long-term (>5 years) rectal cancer survivors. The ability to successfully manage bowel symptoms resulted in improved QOL; however, the choice of diet modifications varied tremendously and was often based on a trial-and-error approach without structured coaching grounded in nutritional science. This resulted in inconsistent outcomes, unnecessary delays in symptom improvement, and, for some, avoidance of foods that actually may help prevent cancer recurrence. 

While registered dietitian nutritionists (RDNs) can provide the expertise to help these patients, evidence shows that even in comprehensive cancer centers RDN services are not readily available. Current patient-to-RDN ratios exceed 1000:1. Better approaches are essential if we are to reach the majority of rectal cancer survivors.

How Can a Clinical Trial Help These Survivors?

In one of the SWOG studies I supported as a research advocate, rectal cancer patients and survivors who have confirmed bowel symptoms are randomized into one of two groups: an intervention group and an attention control group. Patients in both groups will receive regular phone calls from a trained health coach, as well as regular text messages or emails reinforcing the calls, over a period of 6 months.

Though the specifics of each interaction will depend on the needs of each individual patient, in general the calls with the intervention group will focus on individuals’ symptoms and specific dietary changes to reduce those symptoms while maintaining a healthy diet. The health coach will offer guidance on selecting and preparing healthy foods that reduce each patient’s symptoms.

The calls with the attention control group will revolve around healthy living topics such as sleep, sun safety, food safety, and skin care. This is equivalent to, and maybe a little more, than the standard of care for rectal cancer patients and survivors.

What Takes Place During This Study?

Interested rectal cancer patients and survivors fill out a five-question survey to indicate any on-going bowel issues that could be improved by the study interventions. Those who qualify are then asked to fill out several additional surveys. People who complete this step will randomly be assigned to one of the study groups. Follow-up surveys will be completed half-way through and at the end of the study. Participants can choose not to continue at any point during the study.

Research Advocacy Can Be Key To Helping Cancer Patients And Survivors

I am so gratified that as a research advocate I’ve been able to help launch and continue to support this study, which is currently open at over 130 hospitals and cancer centers throughout the United States. As a result of my work, and that of many dedicated health care professionals, rectal cancer patients and survivors at these facilities are now able to contact their doctors to see if this study might be able to help improve their quality of life. You can check out studies like this at clinicaltrials.gov.

Learn More About Research Advocacy

Fight Colorectal Cancer’s Research Advocacy Training and Support (RATS) program trains colorectal cancer advocates to become the most educated patient voice at the research table.

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