December 2019
We’ve completed this study and are excited to share that results have been published in the Journal of the American Medical Association – Surgery edition. To request a copy of the results paper, please contact Margaret Schwarze, MD, MPP (schwarze@surgery.wisc.edu). If you are one of the 446 patients, 263 family members, 43 surgeons, or 34 stakeholders who participated in this study, thank you so much for your time and thoughts. Please let us know if you have any feedback or questions!
We began this study back in 2014 by working with a group of stakeholders who had experience with high risk surgery, either as a patient or family member of a patient. The group wanted to help patients and their loved ones feel more prepared to make a decision about whether to have surgery and, if they chose to have surgery, feel more prepared for the recovery. The group created a brochure that featured 11 questions for patients to ask their surgeon. We called this brochure a “question prompt list” or “QPL” and wondered what mailing it to patients before they met with a surgeon would do. Would it inspire patients and family members to ask more questions? Would it change the way surgeons spoke with patients? Would it reduce regrets patients might have as they look back on their treatment choices?
Ultimately, we found that the QPL did not have this effect in this study. Although disappointing, it’s important to note that a lot of positive things have come out of this study:
- Surgeons supported use of the QPL and many want to go on using it in their clinics. Some surgeons described the positive impact the QPL had on their patients. One surgeon commented that patients “…may not be aware that they have the right to ask those questions… and so I think this gives them the license to do that.” Another surgeon recalled a patient who viewed the QPL as “…an invitation for her to ask the questions. So that was really positive, and she felt empowered.” We were cheered to hear that surgeons had seen positive QPL effects like this. It also bears mentioning that it is a low-cost and low-risk pamphlet to distribute to patients
- The QPL was mentioned in a recent New York Times article: “Frail Older Patients Struggle After Even Minor Operations.” Dr. Schwarze, the lead researcher from the University of Wisconsin-Madison site is quoted in the article. Please check it out!
- We have a lot more data to analyze from the study and are working on several papers right now to help improve communication between surgeons, patients and family members. We will post these here once they are available
Both the English and Spanish versions of the question prompt list used in this study are available on our lab website. We have also published a paper on how the QPL was created.
Thank you again to all those who participated in this study.
October 2018
We are excited to announce that we have finished enrolling for the study! A total of 444 patients, 263 family members and 40 have enrolled! If you participated, we thank you for your time and trust. Analysis is underway and we look forward to sharing study findings on this website in 2019. Please stay tuned and let us know if you have any questions.
June 2018
We have enrolled over 400 patients, putting us over 86% patient enrollment! As of June 6th, we have 415 patients and 251 family members. We have also officially started analysis of the recorded conversations between surgeons and patients. Over 40% of recordings have been analyzed. We are so grateful to our participants for allowing us to record!
September 2017
As of September 13th, 2017, we have enrolled 269 patients and 165 family members, putting us over 50% patient enrollment! Of those 269 patients, 209 have completed their participation in the study.
Our Patient and Family Advisory Councils (PFAC), which are made up of patients and family members of patients, sent representatives to meet in Chicago to discuss the study’s progress at the American College of Surgeons in August 2017. We had 10 PFAC members from across the country attend the meeting!
June 2017
We have been recruiting patients and family members for one year now! As of June 30th, 2017, we have enrolled 227 patients and 142 family members. Of those 227 patients, 160 have completed their participation in the study.
December 2016
Once again, we’ve nearly doubled our enrollment since our last update! As of December 1, 2016, we have 87 patients and 53 family members — nearly 20% of the total patients we’ll enroll, getting closer to that 25% enrollment goal for January 2017. In addition, 45 patients have completed their participation in the study.
Our Patient and Family Advisory Councils (PFAC), which are made up of patients and family members of patients, have each met three times since the start of the study. In October, representatives from each PFAC met in Washington D.C. to discuss the study’s progress.
August 2016
We’ve more than doubled our enrollment since our last update! As of August 23, 2016, we have 45 patients and 38 family members — nearly 10% of the total patients we’ll enroll. We hope to have 25% of all our patients enrolled by January 2017. Our patients are eager to be a part of this study!
July 2016
Surgeon recruitment began this spring and all 40 surgeons have enrolled. Patient and family member recruitment began June 1, 2016, and as of July 1, 2016, there are 19 patients and 18 family members enrolled in the study.
December 2015
We have received notice that the Patient-Centered Outcomes Research Institute (PCORI) will fund this project. We hope to begin enrolling participants from all five cities in mid-2016.