Listening to Families Helps Sharpen Our Focus on Patients


All research begins with a question.  In medicine, the questions focus on finding better ways to care for patients.

And what better way to begin to answer those questions than to ask the patients and their families themselves. This is the premise for two of the projects currently underway within the Department of Surgery: Listen to our families to improve the patient experience.

Pediatric Surgical Experience Advisory Board

Through a $15,000 award, provided by the prestigious Patient-Centered Outcomes Research Institute’s (PCORI) “Pipeline to Proposal” program, a research team has created a Pediatric Surgical Experience Advisory Board, which brings together patients, parents and clinicians. These varied individuals with different perspectives are working toward one goal – to improve the pediatric patient surgical experience.

 “My child was three months old when she had her first surgery” said mom and Advisory Board member Mary Zygmunt. “I remember there was always a large medical team that came to the room every day -- it was intimidating. Some days were hard for her and when I saw that I immediately just wanted to shut the door and keep them all out. I didn't of course. But it's a reality every parent faces.”

Its psychosocial stressors like these encountered during the surgical experience that the Advisory Board members are capturing.  This identification is important so that ultimately appropriate support can be developed for the patients and their families. 

The PCORI award was given to Katherine Barsness, MD, MS, pediatric surgeon at Ann & Robert H. Lurie Children’s Hospital of Chicago and Associate Professor of Surgery and Medical Education, Northwestern University Feinberg School of Medicine, who is leading this effort.

“Current interventions focus on health-care provider initiated programs and unfortunately most have failed to properly engage the very stakeholders who stand to benefit most from them: pediatric patients and their families,” said Dr. Barsness. “Without patient input we cannot knowingly identify and meet the specific needs of our patients and their families.”

Another perspective that is important as we try to identify ways to improve the patient experience is that of the referring pediatrician. According to Advisory Board member and pediatrician Barry Altshuler, MD, looking at the communication between surgery team members and the primary care offices is critical. “We need to have a uniform message to our patients and their families about how to prepare for surgery and what to expect before, during and after the procedure.”

The Board has pinpointed and ranked the top three key family stressors: anxiety, communication, and managing expectations.

Identifying these stress points is the first step.  In August the Board plans to use this ranked list of stressors to guide the development of intervention options to address them through comparative effectiveness research. This might include using Child Life Specialists to a greater degree or developing better communications vehicles, for instance.

Finally, in 2019 the Board will submit a competitive proposal to PCORI based on the development of a comparative effectiveness research question driven by the entire Board. The proposal will focus on two interventions to address the selected issue such as anxiety or communication to assess which intervention provides better results.

“I am pleased that Lurie Children’s is including parents on the Advisory Board team, as parents are one of the hospitals ‘customers,’” said Heidi Albert, whose son Reid had surgery at Lurie Children’s Hosptial. “We end up being the quarter back of a child's surgery and can provide that additional perspective.”

“It is also important to include actual patients, too, as patients and parents have different experiences,” said twelve-year old Reid who is also on the Board.  “For instance, as a former patient, the hour or two before going to the hospital was nerve-wracking because no one had told me anything – we had not heard from the doctor and the surgery was so close.”

Established by the non-profit PCORI, the “Pipeline to Proposal” program funds two tiers of awards that help individuals or groups build community partnerships, develop research capacity, and hone a comparative effectiveness research question that could become the basis of a research funding proposal to submit to PCORI or other health research funders.

Dr. Barsness’ study was one of only 46 Tier 1 projects funded this fall through the program.  All approved projects, which were recognized with awards of up to $15,000 each, are intended to develop the capacity for patients, caregivers and other stakeholders to participate in patient-centered clinical comparative effectiveness research. In addition to this Tier I award, the team was recently also awarded the PCORI Pipeline to Proposal Tier II $25,000 award to continue to develop this program further.

Animated Research Pre-Consent Video

Medical research helps find cures for disease. It can help evaluate treatments. It provides great benefits to patients and to humanity.  But it can be scary and confusing for parents and children when approached by a researcher or clinician to consider participating in a study.  As an academic medical center, Lurie Children’s Hospital has many opportunities for participation and saw a chance to improve the informed consent process.

In May 2016 a team of researchers from across the hospital came together as a group and collectively determined there was a need for better communication.  They began working with former patients who are members of the Lurie Children’s Kids Advisory Board and teen-aged students at Walter Payton High School in Chicago to help fine-tune the best communication options for a pediatric and adolescent audience. 

“We hypothesize that by ensuring a better understanding of research and why it is conducted before approaching a patient or family for consent, we can better address any patient fears, increase participant retention rate, and demystify research. In short, we are looking to explain complex research and health concepts in engaging ways for children and their families  The goal is to provide an understanding of the process so the families can truly make an ‘informed consent’,” said Ferdynand Hebal, MD, researcher at Lurie Children’s. There are inherent challenges when engaging children in this type of effort which the team had to consider including:

  • Using age and developmentally appropriate information
  • Acknowledging family and child apprehension about participation

After looking at several options, the team landed on the concept of a short animated video.

“Having a specific 2-3 minute animated video that can be shared prior to asking for any consent will help to standardize the consent process,” said Dr. Hebal.   “And both the high school teens and members of the Kids Advisory Group felt strongly that animation was the way to go.”

By working with the youth teams it also became clear that when patients and families are approached about participating in a possible research study, they don’t even know the questions to ask.  As a result, the video provides suggested questions including things like:

  • What will happen in the study?
  • How long will I be in the study?
  • What are you trying to learn from this study?

While questions like these might seem obvious, when first approached about study participation often fear and confusion are the only things that come to mind.  This will provide a firmer foundation and drive better discussion and engagement.

And the teens helped in other ways too.  They have provided very useful input in refining the video storyboards. “For example, we had a researcher pictured in one of the scenes, buried in his books,” said Dr. Hebal.  “However, the feedback from our youth teams was that he should be looking at a computer instead, which certainly made sense. This type of feedback is making the video more real for the intended audiences.” They also pointed out where we could address diversity in a more meaningful way.

 “Videos like this already exist for an adult audience and are widely used in academic institutions across the country, however, resources like these for a pediatric population are few and far between,” said Dr. Hebal.

 “This idea helps brand Lurie Children’s as a leader in the field of pediatric research, which can help position the hospital as a preferred site for investigator initiated and industry sponsored trials and the go-to place in the nation for clinical and translational research,” said Dr. Hebal.

This pre-consent video will begin to be used across the hospital starting this summer.

The hope is that after this video is completed, we will be able to begin to build a family focused educational video series on related topics such as randomization and clinical trials, to help clarify other aspects of research, as well.