Study Issues

Guest Expert August 2011: Karen Anderson—How Do You Keep Participants on Long Term Follow-Up?

Last Updated: Aug 30, 2012

Originally posted by: Linda Parreco, AccrualNet Co-Moderator, on the former AccrualNet site on Aug 31, 2011.

 

Please welcome our guest expert for August, Karen Anderson of Cancer Research And Biostatistics. Karen worked as a Retention Manager on the Carotene and Retinol (vitamin A) Efficacy Trial (CARET) at the Coordinating Center for 12 years. CARET, a lung cancer prevention trial, had six study sites that recruited over 18,000 male and female adult participants who were either heavy smokers or had asbestos exposure. Karen currently works on the SWOG study, Selenium and Vitamin E prostate cancer prevention trial, SELECT, as a Retention Manager at the Coordinating Center. SELECT began in 2001 with over 400 sites which recruited over 35,000 men with 18% African American. Prevention trials are often long term studies with very large participant populations being studied over 7 or more years. The retention challenges are daunting and we appreciate Karen’s willingness to share her wealth of experience on this important topic. Welcome Karen!

 

Karen Anderson's Post:

 

How do you keep participants on long term follow-up? Can you imagine signing a consent that says you agree to take two supplements every day for 7 – 12 years? Why would you want to do this if getting paid to do it is not an option? Finding money and staff time to support retention is even more of a challenge. Large institutions have infrastructures but the layers of approval can be overwhelming. Small sites have little to no infrastructure so how can one person do it all? You must plan for retention from the first day of recruitment which means if you are writing a grant, consider budget needs and staff time. I’ll gladly share 22 years of experience with many successful and not-so-successful strategies gained from just 2 long term prevention trials which totally accrued over 53,000 participants in over 400 sites. Some retention strategies included a variety of retention items:

 

  • Utilizing a national committee of researchers and CRAs
  • Creating videos
  • Putting on social events
  • Providing newsletters
  • Maintaining a participant advisory board

 

Want more details? Respond to this post and share what works and what doesn’t work for you?
Karen Anderson

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Originally posted by: Anonymous on the former AccrualNet site on Sep 01, 2011.

I\\\'d like to share some of my experience of working on both the CARET and SELECT trials. One thing worth noting about these two trials is that they recruited healthy subjects, making them a different population from subjects enrolled in treatment trials who are likely highly motivated by their disease to remain adherent to trial protocols. Nevertheless, we know from survey data that the CARET and SELECT participants were highly altruistic. Helping future generations and giving back to the community were frequently cited reasons for participating in the research. Appeals to altruism can help promote retention.

At my SELECT Study Center, perhaps the most important thing we did to promote retention was to take a customer service approach towards the participants. We reminded ourselves that by participating, the participants were doing us a favor, which, of course, we were grateful for. As an example, we made sure that the study center was a pleasant place for participants to visit. My office where I conducted SELECT visits had a 12th floor view of downtown Seattle (the VP for Medical Affairs at my institution told me that my office was nicer than hers). Whenever a participant admired the view, which was frequently, I told him that we wanted to have a nice place for him to visit, and, most importantly, I thanked the participant for making it possible for me to have an office with a view. Otherwise, I would tell them half-jokingly, I would probably be in a cubicle in a basement somewhere.

We decorated our offices with items of personal interest in order to make them more friendly and individual, and foster a connection to the research coordinator. One was a collector of baseball cards and had some of his collection on display. Another was a \\\"foodie\\\" and kept interesting recipes available. I hung opera posters in my office, which led one participant to label it the \\\"Wagner room\\\" (in reference to the 19th century German composer Richard Wagner).

In both the CARET and SELECT trials we tried to keep participants seeing the same research coordinator for each contact, to build rapport and professional familiarity between participant and coordinator. The tricky thing here is that for purposes of retention, we really want to bond the participant to the study first, and secondly to the individual coordinator.

Another tool for keeping participants going is to offer retention items, the ever popular pocket calendar being an example.

One thing that didn\\\'t work very well for us was holding public meetings for participants. We surveyed participants to find the most popular day of the week and time, produced and mailed a flyer for the event, lined up speakers, reserved a meeting space, canvassed local businesses to donate snacks and beverages--in other words, alot of work. To our disappointment, the turnout was poor, less than fifty of our over eight hundred participants. If you want to try holding a public meeting, I would recommend that you keep it simple. The most popular part of the program was giving the attendees the opportunity to ask the PI any and all questions.

Retention is, of course, is an on-going process and there are alot more great ideas on how to foster participants\\\' committment to the study.

I\\\'ll close by again stressing the customer service philosophy. Remember, the participants are doing the study a favor, not the other way round,

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Originally posted by: Anonymous on the former AccrualNet site on Sep 29, 2011.

Take me out to the Ball Game! We had a similar experience with educational events at our site; very few participants elected to attend. When we saw the success that the study of tamoxifen and raloxifene for preventing breast cancer(STAR) had with their luncheon at the Junior League, we decided to do something similar for the SELECT male participants. We did not think they would go for finger sandwiches and tea, so we opted for an annual baseball game retention event with hot dogs and popcorn. We included a pre-game program with questions for invited physicians; we rotated internists (for heart, diabetes, endocrine issues), dermatologists, urologists and study leaders (for SELECT specific questions). The program was a big hit, the questions persisted into the start of the game on more than one occasion. One really funny occurrence happened when we were not on top of things and delayed cutting the cake and we found out how resourceful our participants were when they cut it themselves and got the job done. When the gas prices went up we made a big deal out of it! We had a Blues Brothers type of skit where our clinical research associate with a briefcase handcuffed (fake ones of course) to her wrist walked down the center aisle to the podium accompanied by our two largest participants in dark glasses. She slowly opened the envelope in the case to present the winner of the GRAND PRIZE with a voucher for one gallon of gas! The room exploded, it was great! Funding for these ballgames was interesting and definitely a challenge. We are at a large academic center and received donations from our department chair, division head and local businesses donated door prizes. One year an outside donor supported one of our games; there was money left over to support the next annual game. Another year there was no money and no game; the participants understood. Fortunately, we were able to say goodbye to our participants as they went off to centralized follow-up with a very emotional final game and program. Those retention events took a lot of staff time and money; but I must say that it was a true labor of love!

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Originally posted by: linda on the former AccrualNet site on Sep 29, 2011.

Thanks so much for sharing this great story! Not only did it engage the study participants but also the study staff. Has anyone else used a similar approach in retaining participants on a prevention study? (Also, apologies for our temoporary technical issues that prevent us from formating these posts in a more reader-friendly fashion!) Linda Parreco, AccrualNet Co-Moderator

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