TABLE 2

Reasons for Excess Hospitalizations in Pediatric CCI: Illustrative Stakeholder Quotations

DomainsStakeholder Quotation
Child factorsIllness complexity and severity
 Our patients who are chronically and critically ill, when they come in it’s typically not just 1 body system that’s affecting the child. They may come in for a respiratory illness but it’s not just affecting pulmonary issues. It’s also affecting their feeding and ability to tolerate feeds, which also tends to stem into other issues as well. State 3, nurse, NP
Technology needs
 The kids who get stuck in the hospital often are sort of intermediary. They have respiratory support levels that just cannot be met elsewhere in the hospital or even at home. That’s the group that’s really growing very quickly, the kids who need noninvasive ventilation 24 hours a day or something close to that. State 3, physician
Iatrogenic illness
 I’m also a firm believer, and I’ll stand by it, is that bad things happen in hospitals. Once a complicated kid gets admitted to a hospital, they generally end up staying at that hospital for a long period of time. Not always because of the reason they got admitted for, but because other things fall apart while they’re there or they get sick from something they’ve been exposed to or a procedure is done on them to help the first problem and causes 3 more. State 1, physician
Family factorsHome care demands
 I do as much as I can at home. I’m only 1 person and obviously I can’t stick a tube down in my daughter’s trachea to suction out the junk that she’s coughing up. There are certain limitations as far as what we can do, but also being that I’m just 1 person, I get tired. I can’t stay up for 6 days straight making sure that every hour on the hour, she’s being suctioned, alternating hours with nebulizer treatments and different medications. I can only do so much. So it’s almost a relief when my kids are admitted because it means I get a break. So while I do as much as a I can, I don’t necessarily fight having to take my kids. State, 1 parent
 There’s a difference for families who have a child with an acute illness. When somebody is facing an acute illness, everybody runs and they bring dinner and they carpool your other kids and it’s a crisis; everybody pulls together. When you’re dealing with a chronic illness or chronic disability, it’s just day-in day-out; the casseroles aren’t coming to your house. Nobody’s carpooling your kid. It’s just this level of stress that’s always up here. State 1, other professional
Social context
 Our challenges in our hospital, talking about critically ill children, would be that small population of children with various needs that the parents cannot do at home or don’t have the home environment that is safe or the financial means or job that they can afford a better, safer place to bring that child home. Therefore, they stay in this hospital for years. State 2, social worker
Family training
 When we were spending a lot of time in the hospital, a lot of it was because we weren’t trained, we weren’t educated, and we didn’t have the support that we needed at home. When we were first sent home from the hospital, we weren’t sent home with nursing or with anything other than just a suction machine, a feeding pump, and “Hey, good luck!.” We didn’t have a clue what we were doing. It was, I guess, unpreventable that she was going to get sick. State 4, parent
Clinician factorsLimited CCI care education and guidelines
 I think that our residents do 4 months of ER training, but they don’t have any required rotations in complex care. Thankfully they’re starting to realize that that’s a deficiency and I think more and more of them are starting to do electives. But it’s not a required rotation. State 4, physician
 For a NICU graduate with a tracheostomy who had increased secretions, we don’t have a standardized way to evaluate and treat…Some providers may keep those kids in the hospital for 10 days. Some people may keep them in the hospital until they’re back to their baseline oxygen and ventilator settings. Some people may not admit them at all. There’s this variable pattern, because there’s a lack of evidence to guide us in what to do. State 4, physician
Unfamiliar with CCI child’s baseline
 And parents tell us all the time…“Oh, we walk into the ER and everybody’s eyes get big and they start going, ‘Scramble the jets. Take that patient out of that ambulance, because this one’s going in the quickest route we can get them to somebody who knows about this kid.’” State 2, physician
Overwhelming complexity
 Often they were the sickest looking kid in the ER and it took too long to sort things out, so you’d just automatically admit them. Which led to unnecessary hospitalizations, and they always had prolonged stays. State 4, physician
 We have a great relationship with her primary care physician. He’s not always comfortable. He said recently, “She scares the heck out of me.” But he’s trying to help us out. He’s doing things by phone, “Yes, I’ll call this in rather than make you come in.” He’s very quick to send us to specialists, and I don’t blame him for that. I do believe that primary care physicians, so much is put on them. They don’t have the expertise either, but at the same time, somebody has to help us. State 1, parent
Health system factorsHome nursing and medical equipment availability
 In our state they pay pediatric home nurses on a lower scale than they pay adult home nurses. And so that is part of what has led to this dramatic shortage of pediatric home nurses. State 5, physician
 In this region, we don’t have optimal, responsive, high-quality durable medical equipment support. There’s only a few companies that provide everything from home infusion services to wheelchairs to vents to equipment changes, like trach collars and things...We have endless complaints from our families that their child needs their trach changed twice a week, and they’re given 2 to last 90 days and told to rinse them out, for example. State 5, physician
Qualifying diagnoses
 There’s a very skewed definition of rare and expensive disease. For instance, there are no cardiac diseases on that list. It’s a very specific list that allows you to receive a lot more resources, but it’s very skewed and, I think, just based on advocacy. Whoever advocated for those illnesses. I have a patient at 3 years of age with diabetes, a stroke, and atrial standstill, who isn’t considered rare and unusual disease. He gets no resources. He’s got a single mom, who is taking care of coumadin, insulin, you know, poststroke, with no resources. So, the way our society defines who needs help, and who needs the extra resources is arbitrary, really. State 1, physician
Reimbursement structures
 If I take on a complicated patient, I am penalized rather than being compensated or encouraged. I’m never going to get paid if I decide to take 2 hours off and go visit a complicated kid in their home. If they’re on expensive medications, I’m going to receive a sheet from the insurance company that says this patient is being treated with all these very expensive medications and thus you are going to be penalized for having that patient on your panel. There’s probably an awful lot of care providers out there who are well trained and more than willing to take on kids like this and keep them in their homes and in their communities. But the barrier that’s out there is that it’s not up to the physician. State 1, physician
 I think that the medical system could chose to focus more on helping to keep kids at home by putting other systems in place, but at the moment reimbursement structures don’t…the home care…things may shift as medical reimbursement shifts, but helping them stay at home as much as possible isn’t always the first priority. State 3, physician
  • ER, emergency room.