Results Summary

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

People who have irregular heartbeats often must decide whether to have surgery to put a device called an implantable cardioverter defibrillator (ICD) in their chest or stomach area. If their heartbeat becomes dangerously irregular, an ICD would give the heart a small shock to make it beat regularly. However, ICDs can have disadvantages. An ICD might not always work when it is supposed to, or it might shock the heart at the wrong time. When an ICD delivers a shock, some patients feel frightened, anxious, or depressed.

Patients who might be helped by an ICD need to talk with their doctors about the pros and cons of having an ICD so they can choose what is best for them. Doctors and patients can use tools called decision aids to help them make decisions together. There are decision aids for many health topics. Decision aids may be printed booklets, videos, or websites. However, little research has looked at what kind of decision aid works best for patients considering an ICD.

Project Purpose

The research team wanted to find out which type of decision aid works best for people making decisions about whether to get an ICD. The team developed four versions of a decision aid: a worksheet, a paper pamphlet, a video, and a website. The researchers wanted to know which versions of the decision aid

  • Were easy to use
  • Were best for helping patients make decisions that were consistent with their values and didn’t cause regret or stress about the decision
  • Were most likely to be used by patients

Methods

To create the four versions of the decision aid, the researchers used information from interviews with 28 patients who had been referred for an ICD or had received one. The patients were from medical clinics at three healthcare systems in the Denver area.

The researchers tested the four versions of the decision aid with 21 patients who were considering getting an ICD. The researchers randomly chose which patients got the decision aids and which did not. The team mailed 15 of the patients all four versions of the decision aid. Six patients didn’t receive a decision aid, so that the researchers could compare patients’ use of the decision aids with the usual way that patients made decisions. The researchers told patients who received decision aids that they could use them at their next doctor visits.

After the patients used the decision aids, the researchers interviewed them in person or on the phone. The patients also filled out surveys.

Findings

The researchers found that six out of nine patients thought the decision aids presented information fairly, without favoring one decision over another; two out of nine thought the decision aids favored getting an ICD; and one thought the decision aids favored not getting an ICD.

Most patients (eight of nine) found using decision aids to be helpful. All of the patients who received decision aids said they would recommend the decision aids to other patients.

The study found that patients who used the decision aids were somewhat more likely to make a decision about getting an ICD that matched their health goals than those who didn’t use a decision aid.

Overall, patients liked getting decision aids in the mail so that they had time to review the information before their next doctor visits. But some patients said they would rather get the decision aids from clinic staff. Patients preferred the pamphlet and video versions of the decision aids to the website and worksheet.

Patients said they used the decision aids in different ways. The aids helped some of them think of questions to ask their doctors. Others said decision aids made them feel better about the choices they made. Some patients used the decision aids to educate their families about ICDs.

Limitations

The study did not include many people. To measure differences in the way patients used the four versions of the decision aid, the researchers would need to include more people. The study took place at clinics in the Denver area only. The results might be different in other places.

Conclusions

Patients found that using decision aids was helpful when deciding whether to get an ICD. Patients said they would recommend decision aids to other patients.

Sharing the Results

The research team presented their findings at a national meeting and is writing articles for publication in journals (see below).

Project Information

Daniel D. Matlock, BS, MD, MPH
University of Colorado School of Medicine
$634,376
Development and Pilot of Three Patient Decision Aids for Implanted Defibrillators

Key Dates

June 2012
June 2015
2012
2015

Study Registration Information

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Last updated: March 4, 2022