Challenges of Recruiting for End-of-Life Decision Research

Staff experts help Duke School of Nursing research team fine-tune recruitment materials

March 6, 2017

Sophia Smith, PhD, MSW, (pictured far right, above) doesn’t flinch from the fact that it can be hard to recruit patients with metastatic breast cancer for a study that teaches how to talk about treatment decisions and advance care planning.

“Conversations around end-of-life issues are often hard to start,” says Smith, an associate professor of Nursing at Duke. “No one wants to expose the elephant in the room.”

An added challenge, she says, is that the design of her study calls for recruiting not only patients, but also caregivers and healthcare professionals who are often participants in these conversations. 

To help her research team meet these challenges, Smith reached out to the Duke Office of Clinical Research (DOCR) and the Duke Clinical & Translational Research Institute Recruitment Innovations Center (RIC) to tap their expertise. “I’ve worked with DOCR before,” she says. “I know how good they are.”

Over the course of several meetings, these staff members assisted in the redesign of a recruitment brochure to make it more eye-catching, solved a data collection challenge of how to link data from patients and caregivers without compromising anonymity, and fleshed out a recruitment plan to help raise awareness of the study not only at Duke, but nationally.

 

Tackling the Elephant

The Four Conversations Trial, as it is called, is examining the efficacy of an online intervention that provides structured guidance for four types of end-of-life conversations that a patient might have:

  1. An informative conversation with healthcare professionals
  2. A supportive conversation with family and friends
  3. An inspirational conversation with or about Spirit, and
  4. An honest conversation with yourself.

Patients with metastatic breast cancer who agree to participate complete online REDCap surveys about their preparedness for and attitudes around end-of-life decision-making. These surveys track their attitudes before and after participating in the study. Participants are also encouraged to invite those with whom they might be having conversations to enroll in the study. All of the material is available online so that participants can proceed at their own pace. Given the seriousness of metastatic breast cancer, the expectation is that each participant can complete the study in a brief four to eight weeks. The study is supported by the Pfizer Independent Grants for Learning and Change (IGLC) and the National Comprehensive Cancer Network (NCCN).  

As the time to begin recruitment approached, Smith and her team met twice with staff from DOCR and the RIC to develop a solid recruitment plan.

Four Conversations Information Card

At the first meeting, Smith brought in the study team’s mock-up of a recruitment brochure. Reflecting the many times the team had used the “elephant in the room” figure of speech in discussing the study, they had included the silhouette of an elephant on the brochure.

“Nobody got it,” says Cristy Van Sant, the clinical research coordinator who works with Smith. “We didn’t refer to the elephant in the brochure, so the image didn’t make sense if you weren’t already familiar with the program.”

A redo of the brochure made it more people-centered. Out went the elephant. In came photos of a breast cancer patient with her family. Out went a dry description of the people Duke researchers were looking for to enroll in the study. In came the more inviting “Patients, caregivers, and healthcare providers are eligible.”

“It was fantastic to have fresh input, and a huge improvement,” says Van Sant.

Next came a broadening of the recruitment plan. Based on advice from the Recruitment Innovations Center, the team made plans to purchase a Facebook ad and to partner with breast cancer patient advocacy groups such as Susan Love’s Army of Women Research Foundation to spread the word.

“The entire intervention is done online, so it makes sense to use social media to reach possible participants,” says Van Sant.

To streamline the collection of data, Smith’s team worked with staff at DOCR to create a REDCap database. This secure, web-based data collection tool is one of many tools developed by and supported by institutions like Duke that have a Clinical and Translational Science Award from the National Center for Advancing Translational Science, part of the National Institutes of Health.

Smith had used REDCap databases before, but the Four Conversations study design had a complicated twist: data collected from patients with cancer had to be linked with data collected from their caregivers, all without compromising anonymity.  It was a complicated problem, but Smith says the REDCap team quickly solved it. They were also able to use a new update to REDCap to ensure that all of the data was collected in one database.

“It was a wonderful feat to have all of our enrollment and patient-reported outcome data in one place instead of in separate databases,” says Smith. “It will make analysis much easier.”

For information about the Four Conversations Study,
visit http://dukecancerinstitute.org/fourconversations.

For information about DOCR services,
visit their website at www.docr.som.duke.edu.

For information about the Duke Recruitment Innovations Center services, contact
Sabrena.mervin-blake@duke.edu

 

According to Van Sant, who started as a clinical research coordinator at Duke just shy of two years ago, working with the RIC and DOCR staff on the Four Conversations Study has been an incredible boost to productivity.

“They even walked me through how to register the study in ClinicalTrials.gov by myself – something I had never done before,” she says.

Smith was so impressed with the service of the DOCR team that she wrote several emails complimenting the team’s work.

“They have such an incredible breadth of resources and expertise,” she marvels. “I’ve worked with them before, and I’ll do it again. They offer incredible value for the money spent.”