1
Family Perspectives on High-Quality Pediatric Subspecialty Referrals:
Kristin Ray, MD, MS, LauraEllen Ashcraft, MSW, Jeremy Kahn, MD, MS,
AteevMehrotra, MD, MPH, Elizabeth Miller, MD, PhD
Supplemental Materials
Table of Contents
Appendix 1: Parent/Caregiver Interview Guide / Page 2Appendix 2: Representative Quotes for Family-Centered Structures, Processes, and Outcomes / Page 4
Appendix 1: Parent/Caregiver Interview Guide
Introduction
We’re interested in understanding how the health care system is working for children and their families We want to hear about your experiences—and especially when things have worked well for you and when they have not worked well for you.
I’ll be asking about your experiences with different providers in the health care system, and I will be asking about your experiences with specialty doctors and primary care providers.
Specialty doctors are doctors who take care of one part of your child’s care, such as cardiologists, dermatologists, eye doctors, ear nose throat surgeons, and allergists.
A primary care provider is the doctor, nurse practitioner, physician assistant, or practice that your child sees for his or her check-ups.
We’re also interested in your thoughts on what needs to be made better – please feel free to think big and tell us how the system can work better for patients and their families.
I will begin recording now.
To start, I am interested in learning about your experience using specialty care.
Please tell me about the specialty doctors that have been important to your child’s care over the last 2-3 years.
Tell me what has worked well in your experiences with [this/these specialty doctor(s)].
What has been frustrating, disappointing, or inconvenient about your experience with [this/these specialty doctor(s)]?
The next few questions will ask you to think about specific parts of the process of seeing a specialist.
How did you decide to first involve this specialist in your child’s care?
What were your expectations or hopes in involving this specialist in your child’s care?
How has your experience with this specialist compared to your hopes and expectations?
Tell me about your actual visits with this specialist – what has been good or bad?
What is it like when you need to communicate with this specialist before or after your visits?
What do you think about how your primary care provider and this specialist communicate with each other?
What would exceptional specialty care look like?
To learn more about how to help patients receive the care they need, we want to hear more about times where you had difficulty obtaining the care that your child needed.
Tell me about a frustrating, disappointing, or confusing experience with specialty care.
Have there been times were you were told to see a specialist for your child but ended up not seeing that specialist? Tell me about that.
Have you and your primary care provider ever had different opinions on whether your child should see a specialty doctor? Tell me about that.
What factors are important to you when you are deciding whether your child should go to another appointment?
Do you have any additional comments on any of the topics we have discussed?
Thank you so much for your time and sharing your experiences.
1
Appendix 2: Representative Quotes for Family-Centered Structures, Processes, and Outcomes
Domain/Step / Subdomain / QuoteStructures
Physical Infrastructure / Parking structures / Even the parking there was sometimes an issue. Here, especially if we schedule late afternoon appointments, parking’s not an issue. When we scheduled appointments earlier in the day, sometimes parking is an issue.
Signage/instructions / There’s no direction as to where to go, what to do. I mean, there’s an admin desk but there’s no signage saying, “If you’re here for a test, please sign in. If you’re here for a doctor, just go up to your”—it’s a very confusing place.
Just making kind of like sure the signage is clear that, you know, you can get from let’s say your car, or wherever you’re going, to that office.
Human Resources / PCP capacity and expertise / So we first scheduled with the pediatrician, and had her take a look, and she determined that it was probably something that made sense to have a specialist, you know, evaluate.
Yeah, they told me there was no one in Pennsylvania that had it, so they gave me papers for me to do basically my own research online and they gave me a number to call someone in the United Kingdom… it’s like they had me just running around like I’m crazy.
Subspecialist capacity, training, and expertise / But I think I’m choosing specialists that have an abundancy to them, versus your specialists where you’re much more limited. My children have ear issues, asthma issues, and orthopedic issues... So, because you have an overabundance of those type of doctors, I personally have never experienced any ridiculous wait to see a specialist. I think it’s when you get to your more limited specialist that it’s where the problems are. In my opinion. I mean, not that I’ve experienced it, but I have a lot of friends that have experienced it.
He had a lot of expertise, and he was actually—like he had X-rays to back him up, but he had experience with reconstructing knees and whatnot... he was actually able to look at my knee and like feel my joint and just tell where the surgery needed to take place, and I—that was pretty impressive.
Because unfortunately I’m just one of those people that children see pediatric doctors. If your child hurts themselves, they see a pediatric orthopedist. If they get an eye injury, they see a pediatric ophthalmologist. So for me, I just put up with it, because I just think that’s, kids see kid doctors. And you just got to suck it up
She did end up seeing a fellow instead of the actual the doctor—the doctor did come in at the end after the diagnosis and see us and just confirm that she agreed with the fellow, but I wasn’t honestly terribly upset by that, because I feel like at the point of being a fellow you’re basically a specialist. You know what I mean? Like that…it’s not like they were some medical students—you know what I mean?—who didn’t know anything. This person actually was very familiar; had been practicing a while, so I was fine with that..
Subspecialist office staff capacity and expertise / I just know as a mom of a kid that has extra special needs and other moms that I’ve gotten to talk to, there’s so much that we have to deal with with that, but dealing with people who answer phones and hate their job and have no idea why you’re calling does not make anything easier, and that’s totally just a…that’s totally just a personality kind of thing, but just the stupid things that could be easy fixes, like having a system of scheduling that works, having departments that talk to each other and knows what’s going on, those little fixes are not little things to us. That is a huge, huge, huge help when we’re already trying to deal with, you know, numerous departments—and even not numerous departments. If you have one department you work with, but your kid has a lot of extra needs, that’s a lot to take on; and when you have to deal with fighting all these extra battles that don’t need to be fought, it makes life so much easier for everybody. I mean, I’ve gotten to really meet a lot of other parents that are in the same situation and some that are in worse cases and some that are in better cases, and nobody likes to spend their time at the hospital, so just those little things can make it easier. It’s not a little thing; that is a huge deal to us.
And then the other thing is registration. The check-in and registration and waiting to see somebody is not always…the people that we talk to are nice and everything, but the process itself can be kind of cumbersome and can sometimes take quite a while to get done.
And I think the other thing I liked in particular is it’s all, for the most part, it’s always like the friendliness of the staff. So it’s kind of like from the moment you get there, you just kind of feel, you know, a sense of ease, kind of like, you know, I know I’m in good hands, and people are here to help me, and there’s nothing to be embarrassed about or anything. So, I think it’s kind of—people’s people skills, in a sense.
It was a lot of phone calls, a lot of phone tags, a lot of not—from the[subspecialist] office, like the personnel, not communicating really well with us.
Information Technology Systems / Shared electronic health records / Well, she—being that she’s at [hospital affiliated with PCP practice], she was able to access all of [name]’s records, so that was helpful.
They are very conscious of going in and looking at any updates on, you know, my chart and seeing, you know, did I see another provider since I last saw with them. And I find one thing that is an indicator of that is they’ll kind of mention, “Oh, I saw you saw person X since we last spoke.”
After visit summaries / At the end there was kind of like a summary, like a take-away point. So it was kind of like, here are the things we talked about, and kind of here are the things in each category you can start kind of implementing… he prints me a reference sheet, ok, I checked off number 2…
Patient Portals / I was able to use the [patient portal] app to pull up the results for her bloodwork, and the PCP was able to just read that from my phone. So in that way the [patient portal] app was very helpful.
Telephone triage systems / If I call the office, I don’t get through. They have a system where, “Press this button to get to the office,” and you press the button and you end up at like an answering machine or the answering service; you don’t end up with the doctor. And you leave a message and you’re hoping that somebody will get back to you. If it’s an emergency, or I have like an urgent question, I have called a couple of times in like a fifteen minute period. We had gone for therapy, and they needed some papers, and it could be faxed right over, but I was unable to get in touch with anybody in the office, and that went on for half an hour. So, you know, they’re not answering the phone if it goes to a call system. I believe it might go to a system where they dispatch—[interruption]—where they might dispatch the call to the office, and then I get a recording. That’s a frustration. I want to be calling the office and talking to somebody right there, then and there.
Sometimes getting information though from his staff over the phone proved to be a little difficult at times. Like if you weren’t given a direct number to his assistant, trying to figure out the best place to go to leave a message to check back up on an MRI, or a question you have, is difficult if you don’t have his assistant’s number. I’ve noticed you really, it just makes it difficult. I don’t know why it’s easier if you’re dealing directly with his assistant, but it is easier. Versus calling for a random reason and getting redirected to a nurse and having to leave a message. And, sometimes you’re waiting over 48 hours for a phone response. I did not find that when I was dealing directly with his assistant, but I did find that when for some reason I couldn’t find their number and I had to call in to the generalized phone number and had to leave a message. It took me a couple tries to get a call back on sometime, and that was very frustrating to me. Because it was just a simple question, and I don’t know why it should take over 48 hours to get a phone call back to somebody.
Electronic messaging systems / I actually like it, because I feel like if I’m at work, or he’s at daycare and he’s sick, I can email them and be like “Oh I have a question about my son’s health,” instead – because Google’s not always good to look it up. I’d rather have a doctor explain it to me. If I don’t understand what’s going on I can email the doctor.
I have e-mailed [subspecialist] a couple of times and I did get responses from them, so email is fine. I mean, it’s timely, and it’s fine.
Processes
1. Referral decision / Shared decision making / We’re usually on the same page… I was just like well at this point, we’re thinking he needs to see a pulmonologist, and they were just, they were in agreement.
Clear referral reason / They would be more hands-on in his asthma treatment
Specific subspecialist identified / The pediatrician said she hadn’t done too many referrals to orthopedics so she… didn’t have a specific doctor’s name in mind so I checked further on my own and got the name of Dr. [name]
2. Pre-visit information transfer / PCP records provided to subspecialist / [PCP] was managing [name]’s care to a point, and she’s like, “I think you need to see Dr. [name] and consult with him.” Which, she called him and talked to him, and the two of them worked together.
Subspecialist reviews records prior to visit / Having people read his chart – as simple as that sounds, and just being able to know what is going on with him before we have to repeat everything a million times makes a world of a difference.... it automatically makes me trust them because I don’t feel like I have to have my guard up of thinking, “You don’t know anything about this kid, and how are we going to get anywhere with knowing what he needs if we have to spend all this extra time just getting you on the same page?”
3. Appointment scheduling / Amount of time spent scheduling appointment / Well, in terms of scheduling and other frustrations like that, sometimes it’s very frustrating how long it takes to schedule things and how far away things need to be scheduled.
Reliability of processes for scheduling appointment / Whenever you call to make an appointment if you have to leave a message I find sometimes that’s not returned in a timely manner. Or it just seems like of like you don’t get a call-back. Like you have to go back and kind of take that initiative, you know, to make sure then you schedule that appointment.
Timely appointment scheduled / Or they’re scheduling me, like, a year later when she needs to be seen now.
Calling today and getting an appointment today. Which is not going to happen, and I understand that. But that—you know, I mean, we do get to make our appointments, and you know, they may go like months ahead…
Convenient appointment scheduled / It would be nice that, when you do make an appointment, and if you’re seeing a few other doctors, it would be nice to have them done on one day, if that could be arranged to like work it out that we can schedule all, and within—I mean, even if we stay the whole day it doesn’t, you know, but at least we know we’re getting all three or four doctors taken care of in one visit.
So you having—you know, one of the things that helps us is being able to do I would say slightly later day appointments, like, you know, having appointments between 3:00 and 5:00. Because then typically if, you know, if I’m leaving work, I’m only, you know, leaving a little bit early, and then [name] maybe is only missing a little bit of school.
My husband works really strange shifts and he tries to come down with me, because we have a two-year-old daughter, also. And I can’t really—I want to try to focus all myself on them, you know, whenever we talk to them. So my husband can take care of my daughter.
I’m like, working around, like schedules, because my kids are in school, so usually she’ll try to make them stay within a time limit for me to be able to get her down there, to get home, to get my kids off their buses and things.
And her dad likes to be at appointments, but he owns his own [business], and he only has certain days a week that he’s available, and sometimes those appointments are not available when he’s available.
Avoidance of unexpected appointment cancellations / We’re already on edge thinking we had to make a major decision on are we going to do... surgery, and to have a test canceled with no knowledge of that, for us to come down an hour away. Again, you know, we were there five times a week at that point, so, and just the disconnection of not knowing how things are canceled when, “What happened with that?” And then not having the security of knowing that somebody was on our side to say, “Hey, okay. I’m sorry you’re upset. What happened?”
4. Subspecialist Visit / Diagnosis modified / You know, the sleep apnea was all, like first of all the number one concern. And that was ruled out. But as to the source of what are her other problems, what is going on to cause her this amount of fatigue, and needing as much sleep as she needed, being difficult to arouse, those type of things. We still really don’t know... it still needs attention.