Executive Summary
Mattel Children’s Hospital at Ronald Reagan UCLA Medical Center in Los Angeles has developed a “patient passport” to improve the timely and appropriate care of medically complex children who present to the ED. The one-page form, which parents can keep in their wallets, highlights any special indications or sensitivities that the child has as well as contact information for the patient’s primary care provider. The form also includes special instructions for the triage nurse.
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Creation of the tool was prompted by the parents who complained that their medically complex children were receiving different care in the ED than on the pediatric floor of the hospital.
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he tool was developed by a group comprised of parents, pediatric providers, and ED representatives.
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Physicians must create and sign the passports, either in the hospital or in their outpatient clinics, although parents may request a passport for their children.
A medically complex child can decompensate quickly — even if he or she appears to be quite healthy. But grasping the urgency of such a patient’s condition can be especially difficult for triage nurses in the ED who may have never laid eyes on the child before, let alone reviewed his or her lengthy medical history. It’s a problem that Mattel Children’s Hospital at Ronald Regan UCLA Medical Center in Los Angeles, CA, is attempting to solve through the development and dissemination of what administrators are calling a patient passport.
Creation of the tool was initially prompted by Mattel Children’s parent advisory council, a panel that is largely comprised of the parents of medically complex children. “About two years ago they raised the issue that in the ED [their children] were receiving different care than they were receiving on the pediatric floor,” explains Gitangli Arora, MD, assistant clinical professor, UCLA Department of Pediatrics, and chair of the patient and family-centered care committee at Mattel Children’s Hospital.
This is not necessarily surprising in a setting where a pediatric hospital is part of a much larger medical center complex, acknowledges Arora. “A tiny portion of the population of patients that present to the ED [is composed of] medically complex pediatric [patients],” she says. However, she notes that parents were reporting delays in appropriate care because emergency clinicians were not picking up on the clinical signs of acute illness in their medically complex children.
Young patients with central lines and fevers might be vulnerable to sepsis, but they didn’t appear to be very ill, notes Arora. “A child would look so much better than what was actually happening internally,” she says. “And treatments would be started in the ED, but then be quickly changed once the pediatrician became involved.”
Get all sides together
To improve the situation, the parents got together with representatives of the ED and pediatric providers to discuss the problem. During this meeting the ED representatives noted that there was already a mechanism in place to speed appropriate care for children with certain metabolic or genetic disorders. Pediatricians in the hospital had created a prescription-like letter to the ED with specific instructions for this subset of patients when they presented to the emergency setting.
“These patients required a special type of IV fluids, and [these fluids] needed to be ordered right away because sometimes not having that knowledge was resulting in a delay of care, during which time the children would become increasingly ill,” explains Arora.
Thinking this type of solution could potentially work on a broader scale, all the stakeholders at the meeting discussed how they might come up with a similar approach for other medically complex children. “The parents, the pediatricians, and the ED [representatives] went back and forth during this meeting and [concluded] that maybe they could call it a pediatric passport,” says Aurora.
At this point, a champion from each of the three groups got together to devise a passport tool, with each champion regularly running the various iterations of the tool by their respective groups to make sure it was user-friendly and that it had all the information required.
Kerry Gold, RN, CCRN, CEN, administrative /pediatric liaison nurse, at Ronald Reagan UCLA Medical Center, served as the ED champion of the patient passport project. “We had an idea initially of making [the tool] look like a passport, being a couple of pages long, and being the same size as a real passport with different information on each page,” she explains. “But then we decided that the triage nurse is not going to have time to read a whole book. We wanted something very brief, succinct and to the point, so that is how we ended up with a one-page document.”
Highlight key information
One of the key pieces of information on the passport is whom to call when the patient presents to the ED. “A lot of our kids have multiple services who take care of them, so a child might have a kidney transplant, but then also have cancer on top that … so they’ve got renal taking care of them but they’ve also got [hematology/oncology] taking care of them, and sometimes that muddies the waters of who is really in charge of this patient,” explains Gold.
There is also a section on the passport that lists any sensitivities that the child has or any special indications. “We have one little girl who comes in, and she often has a urinary tract infection. She has come in in septic shock before, so that is on her passport,” says Gold. “If the triage nurse knows this child has had septic shock before, or she has had two kidney transplants or a liver transplant, her level of concern will be elevated.”
While the approach started with genetic disorders, the hospital has now “rolled it out to the broader population, and a lot of it has really centered on our kids that get septic, especially our transplant and [hematology/oncology] patients,” says Gold. “A lot of them have a central line or a port, and these kids come in and they look pretty good, but they can go into septic shock quickly.”
With vital information provided up front quickly, appropriate care is likely to be accelerated, including an expedited evaluation, placement in a room, and physician exam, says Gold. Further, if antibiotics are warranted, then administration of antibiotics will be expedited as well.
The passport can also be helpful in quickly conveying that a child is immune-compromised, notes Arora. “Prior to having the passport we had one child who was very medically complex, and the parents were concerned that in his health state if he was in the ED, either in the waiting area or in a crowded room, that he would be exposed to other adults or children with infectious diseases,” she explains. “What this family would do is leave one parent in the ED to listen for their name to be called, and then the other parent go wait with their sick child in the car because they thought that was safer than waiting in the ED for a room to open up.”
However, now the passport has a box on it that says this child is immune-compromised,” notes Arora. “The ED [staff] then knows that they have to get the child to an isolation area as quickly as possible.”
Use parents as advocates
Emergency staff helped to design the passport, and there is a section on it that is directed specifically toward the ED triage nurse, notes Arora. “They find it very useful because when the ED is very busy they just need to very quickly know what information about this child is most important and how to triage the child,” she says.
Typically, when a parent arrives with a child in the ED, the parent will present the passport to the triage nurse, explains Gold. “I think it provides an improved level of comfort for the parents and for the ED staff, and sometimes there is super helpful information on the passport that can guide the initial care,” she says.
Theoretically, any child can get a passport, but it is most useful in the medically complex patient population, advises Arora. “The passport outlines what are [their] medical diagnoses and what are their special needs, so if [a patient] is not medically complex, it is less likely that there will be things to fill out on the passport,” she says. “If there are other patients with other needs that should be specified, or if for some reason their care deviates from the norm, then absolutely they would get a passport, but there is just not much to write unless there is a special need.”
Further, unlike some other passport-like tools that have circulated in recent years in the health care setting, the passport used at Mattel Children’s must be created by a physician. “We are writing in it medical recommendations, so we want to be clear that it is signed and written by a physician,” says Arora. “The providers can fill it out when the child is hospitalized or they can fill it out in their outpatient clinics.”
However, Arora notes that parents have encouraged the hospital to use them as advocates for the passport, and this approach has been useful in encouraging larger-scale adoption of the tool because while physicians themselves must generate the passports, parents can provide the impetus for them to do so.
Dissemination of the tool continues to be challenging, but the hospital is coming up with creative solutions. Arora notes that a pediatric resident made a sign that said: “Wait, does your patient have a pediatric passport? This paper could be life-saving.” The resident then posted the sign all over the hospital to get the word out.
Use a collaborative approach
For now, the passport is paper-based, but the hospital is working on integrating the form into its electronic medical record (EMR) as well. “We aren’t there yet because EMRs are challenging to work with,” observes Arora. However, she adds that even after the passport is integrated into the EMR, the paper-based version will remain valuable. “The parents at our hospital and [people] we have encountered at medical conferences from outside hospitals have said that they think the value in it is that it is a single piece of paper that folds up into your wallet, and that you can quickly hand it over to an ED triage nurse,” offers Arora. “They don’t have to pull anything up; they don’t have to look for anything. It looks official, and it transfers from institution to institution in way that medical records can’t, so it is very quick and user-friendly to everybody.”
Both Arora and Gold believe the passport approach could work well with other medically complex patient populations as well, but they emphasize that it is important to include all stakeholders in the development process. “We would not have had a product that was useful unless the parents were involved, telling us what their experience in the ED was like,” observes Arora. “We needed a physician to translate that into what was medically necessary and what would be the immediate needs of [these children], and we needed the ED to tell us that we needed to keep the passport short, concise, and user-friendly.”
In the end, the hospital was able to devise a natural solution to an obvious problem. “We just needed to find a way for pediatric providers, emergency providers, and parents to communicate essential information quickly in way that was understandable to all three of those groups,” says Arora, noting that a collaborative, inclusive approach produced the most effective end result. “Even if an institution is adopting the passport for their own use, I think it is important to involve those three stakeholders, or possibly more if there are more people involved in using the passport.”
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Gitangli Arora, MD, DTMH, FAAP, Assistant Clinical Professor, UCLA Department of Pediatrics, and Chair, Patient and Family Centered Care Committee, Mattel Children’s Hospital, Ronald Reagan UCLA Medical Center, Los Angeles, CA. E-mail: [email protected].
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Kerry Gold, RN, CCRN, CEN, Administrative /Pediatric Liaison Nurse, Ronald Reagan UCLA Medical Center, Los Angeles, CA. E-mail: [email protected].
