Respondents also emphasized the value of certain characteristics of the medical practice itself. Many of these characteristics align with NCQA standards for PCMH-recognition. Descriptions of valued practice characteristics generally related to one of six categories: (1) continuity of care; (2) care teams; (3) care coordination and management; (4) dedicated care coordination staff; (5) access and communication; and (6) community supports.
Parents described and attached importance to having continuity in the care they received at PCMHs.
Almost all parents discussed continuity as an aspect of care that was important to them. Although some felt it was important to see the same primary care provider each time, others discussed continuity on the care team level. Several parents felt they received higher quality care when they were able to see the same physicians or care team members each time and build relationships with them. One noted, "I really appreciate it when primary care providers for my kids, as much as possible, have the same assistants or CNAs every time. They get to know my kids too, and they get to know me, and I think it just provides overall better care." Another parent felt that seeing the same care team allowed her providers to get to know her son's baseline and thus be able to understand when he could be treated in the primary care office and when he needed to be transferred to a higher level of care. She noted that, "A month ago we had to transport him from the doctor's office to the hospital in an ambulance, and the reason they did that was because [the physician] looked at him and said he was really sick, and this does not look like normal [for him]. And so, for me, it's not someone different always seeing him. The people who see him really know who he is. And so when they look at him and say he's very lethargic, because he has a lot of energy normally, they know that about him. And that to me is very important." Another respondent discussed the stress she experienced when her daughter aged out of pediatric care and had to be referred to another provider, as this meant she had to build a relationship with a new physician.
Two parents discussed their willingness to sacrifice convenience or immediate access for continuity. One respondent whose physician saw patients only one day each week preferred to rearrange her own schedule to have her child see him rather than bring the child in to an unfamiliar physician in the practice at a more convenient time. Another said that although her provider's office could usually get her an appointment soon after she called, "Most of the time, I usually try and wait until his [primary care provider] is available."
Two respondents brought up the challenges they faced when circumstances forced them to sacrifice continuity of care for immediate access. One, whose son often had to be rushed to the hospital, said that "because of his history, as soon as he sees that blood pressure cuff coming or a needle, he has reactions that are pretty rough. And so if you get somebody who's experienced with him, you know, someone who's seen him for three or four visits in a row, that's ok. But that's not always possible; . That's a big challenge."
Parents valued receiving care from welcoming and well-informed teams of providers and staff at PCMHs.
"You walk in and they know exactly who you are. They always acknowledge [my child and ask him how he's doing] and it's the secretaries, it's the nurses, everyone is like that with him."
Although many parents liked feeling known and cared for by their providers, almost all parents appreciated being made to feel this way by the entire office staff, including front desk staff and nurses. These parents appreciated it when staff were warm, friendly, and took the time to build relationships with parents and their children. One parent noted, "[The office] is friendly My kids feel welcome there. [The staff] are very warm. They smile; they use my child's first name and they look at my child instead of just at me when they're [doing] the initial check-in, you know, stand here to get weighed, let me measure you and see your blood pressure. I feel like they're engaged with my child and not just with me." Others noted that they appreciated it when everyone in the office knew them and welcomed them during visits: "You walk in and they know exactly who you are. They always acknowledge [my child and ask him how he's doing] and it's the secretaries, it's the nurses, everyone is like that with him." One parent appreciated it when the office staff recognized her when she called, saying that it made her feel that the office cared about her and her child: "When I call, [the RNs] know who I am by name . That is very helpful, because my child is not just a number to them. They know and care about her."
"When I call, [the RNs] know who I am by name . That is very helpful, because my child is not just a number to them. They know and care about her."
Several parents discussed the importance of communication within a provider's office as a factor in high-quality care as it ensured that all staff who care for their child would be well-informed about the child's situation. Two parents felt that their care team had excellent internal communication, and regarded this as a crucial element of their care. One parent who saw both a physician assistant and a physician in the same office liked that her care team "had good communication [and] good teamwork." Another noted that "If I call one nurse and leave a message or speak with them and get a response [later] from another nurse, there's never been a time that I can remember [when the second nurse] didn't have the full story . That is an invaluable tool to us -- the dissemination of information."
One parent discussed the problems she experienced when providers in her office failed to communicate effectively about her child's needs. This resulted in the provision of suboptimal care by team members who were not well-informed of the details of her child's special health care need. She said, "When we go in for visits and well checks, my one biggest complaint is just that the nurses would ask questions that were very not pertinent to [my child] at all . At one year [my child] was [developmentally] a four-month old baby. They were asking me questions that run along the lines of a typical one-year-old: is she doing this, is she doing that? No, no, she's not. And I could see how that would bother some parents who have a harder time accepting who their child is and then having those questions of all those things your kid is not doing. Your kid is not doing this, you know, all those typical milestones. I think it would be appropriate to evaluate that before you go in, see what questions really need to be asked, and go from there . [We need a] nurse who just knows where [my child] is or just [has] a reference to look at [to see] this is what she was doing last time, ok, is she doing the appropriate milestone beyond that, not just the appropriate one for her age."
Parents regarded the care coordination support provided at PCMHs very highly, especially coordination with specialists.
All nine parents valued their provider's willingness to help to coordinate and manage their child's care. Some parents liked that their primary care provider took a broad view of their child's entire plan of care and helped them to manage all aspects of their child's health. This was particularly critical for parents whose children had extremely complex health care needs and needed help coordinating specialist care, nursing care, feeding and medical supplies, and at-home care. One parent described his child's primary care provider as "the quarterback" on her care team, saying that the physician "is looking out for things not only in the specific sense, [like] the routine 'do you have your shots and records done, how's her feeding going,' those kinds of things. He also steps back a distance from the plan of care to look at all of the disciplines, and weighs this decision from this doctor and this decision from that doctor against the whole picture of her care he very much helps to coordinate."
"[They] are extremely proactive on our behalf in contacting other physicians that we're in contact with [and] getting information from [specialists] . We have much less enigmatic information and a lot more clarity because of the proactive nature of [our physician] and his office."
Several parents greatly appreciated their physician's efforts help them navigate through an often complex set of health care services from multiple providers, and emphasized the value of physicians' efforts to communicate with specialists, acquire information from them, and thus better coordinate their child's care. Parents noted that they sometimes struggled to navigate complicated health care systems, particularly when multiple hospital departments and specialists were involved in their child's care. For some parents, being responsible for transferring information related to their child's care among multiple providers could be overwhelming. One parent noted, "I really like how [my child] has three different doctors that he sees and all of them communicate. [The primary care provider] is always adamant about [that. She'll say], 'Please have the [specialist] email his notes.' It's just helpful for her because she constantly knows the history about him, [and] she always follows up to make sure that all of his notes are in there. And if I drop the ball, she will have me sign a [release, so she can get the notes]. She says, 'We need this, so that we know how to better treat him in the long run. So that, I really enjoy.'" Another said, "What we have found with is that they are extremely proactive on our behalf in contacting other physicians that we're in contact with [and] getting information from [specialists] . We have much less enigmatic information and a lot more clarity because of the proactive nature of [our physician] and his office, their willingness to make those calls, to review those chart notes, to go get those lab results, and incorporate it into the plan of care."
Three parents also liked that their primary care provider helped them to manage their child's medications and prescriptions, sometimes by coordinating with specialists or with medical supply companies. When one child's gastrointestinal (GI) specialist died suddenly, leaving the family to wonder how they would navigate Medicaid's complicated rules for prescribing GI medications, the primary care provider "stepped up to the plate, got the records, reviewed them, and helped us get her prescriptions renewed, [and] helped us get plugged in to another GI doctor." A parent of a child who often needed blood work was grateful that her physician coordinated lab work with her specialist, "so that it's all done on one lab, one poke . Lab work is very hard for my daughter."
At least two parents praised their practice's efforts to track and be proactive about various aspects of a child's health. One noted that the physician tracked a child's immunizations and coordinated this aspect of care with the child's cardiac team. Another parent shared her relief that the primary care office called her when her daughter needed to be brought in for a twice-yearly well visit: "The great thing about them is they call me. Because they know that my daughter sees so many specialists and I have to keep up with so many appointments, they won't make me call them."
Similarly, at least two parents appreciated it when their physician followed up with them to help with care transitions after visits to the emergency room (ER) or hospitalizations. One liked that when her child "gets sent to the hospital or to the emergency room, [the primary care office is] good about following up [the] following day and just checking to see if he's ok or if I need to bring him back in." Another noted that when her child was sick for two weeks, she received phone calls from the office three times a week. When the child had to go to the ER on a Friday night, she remembered that the physician "called me the next day to check in on him. For me, that's the kind of service I need, you know? I'm a single mom with a sick child."
Parents liked that some PCMHs had staff specifically dedicated to coordinating their child's care.
"Having coordinators in the office that handle just special needs cases [is so important]. Since that's all they do, they know everything. They can give me a list of a million nursing companies, or product companies, or supplies I think it's so much better than just having doctors that see special needs kids. These people coordinate."
A few children received care in an office with a "special needs clinic," which parents valued highly. This clinic was staffed by two nurses who offered care coordination services, along with specialized expertise on CSHCN. These nurses were able to build ongoing relationships with families and provide important information and resources to parents. One parent observed that, "Having coordinators in the office that handle just special needs cases [is so important]. Since that's all they do, they know everything. They can give me a list of a million nursing companies, or product companies, or supplies . I think it's so much better than just having doctors that see special needs kids. These people coordinate." Another parent discussed the way in which the nurses served as care coordinators who could, for example, take care of sending prescription requests from supply companies to the physician. This parent found the nurses to be an invaluable resource and source of support when dealing with her child's complex health care needs, noting, "In the past, medical supply [companies were] one of my big frustrations . They just didn't seem to get it right . So I could call that special needs clinic, and say, am I expecting too much? What is normal? Are my expectations too high? So she would assure me 'no, you need to be getting the supplies you're supposed to be getting.' So she would just assure me. Because in the beginning, I [didn't] know what normal [was]. So to run that by the special needs nurse was good." Another parent appreciated the care that these nurses gave his child, saying that they "bring to the table great experience, knowledge, compassion. They just have this great compassion and sympathy, and caring for the kids. It's not just another appointment to check off to them."
PCMHs offered superb access to providers and other care team members.
All nine parents felt that their provider was easily accessible and placed a high value on this practice characteristic. Three important aspects of access for parents included: (1) having direct access to advice and support; (2) getting a quick response; and (3) having a way to get medical advice after normal business hours.
Several parents valued having direct access to a medical provider who knew them and could provide medical advice, rather than being forced to go through the front desk or a complex phone system. One parent said, "What I love about it is when I call in, I have the extensions of the special needs coordinators, and so when I call I can go straight to them and I don't have to go through a [main] line." Another parent liked that his primary care office was "very easy to get a hold of; there's always someone on the [other] end of the phone." Parents also valued e-communication as a direct connection to their provider. As one parent described, "with email I know it's going right to her. I don't have to sit on hold or spend a lot of time waiting to figure out which button I should push to talk to who I'm trying to talk to."
"After-hours they have what's called telecare."
Due to the complex, urgent, and frequently changing nature of their child's special health care needs, parents greatly appreciated receiving timely responses. "As a parent of a sick child, if I need [the doctor], I really need [her] right now," said one parent. One parent noted, "When I need someone right now for [my child], if I have a question right now, I can call. [The nurse] is able to email [the physician] right away if I need a quick response. She can even go find him and ask him. So I have a quick way to get what I need if needed . That's very important to me." Another parent liked that her provider was "very accessible. She returns calls very quickly and I don't feel like there's a point that I couldn't get a hold of her if I needed to."
"One thing that I'm really pleased about is whenever [my son] does get sick I can call them and they have [an] available answering service. Even if it's at two or three o'clock in the morning, they're always there for me."
Several parents valued that their provider was available for advice and support outside of normal business hours. These parents liked having access to physicians or nurses through an answering service, or having the ability to call and make a next-day appointment if the child became sick in the middle of the night. One parent noted that, "After-hours they have what's called telecare. With that, you initially contact more of a secretarial [person] and then they'll give the message to a nurse and the nurse will call you back [but] that initial person, though, is able to schedule appointments I can call at four o'clock in the morning and make an appointment for the next morning." Another parent said that, "One thing that I'm really pleased about is whenever [my son] does get sick I can call them and they have [an] available answering service. Even if it's at two or three o'clock in the morning, they're always there for me, and [tell me] about what I need to do to take care of [him]," noted one parent. Another noted that, "They do have a nurse line which I think is really important so that parents can reach a nurse day or night, any day of the week. I've used that several times. I really like having access to a nurse, even if it's just over the phone." Two parents wished that their providers could offer in-person care on an expanded basis. One thought it would be helpful if her child's physician saw patients on the weekends, whereas another wished that the office was open on weekdays outside of normal business hours: "I'd like to see hours a little bit earlier than eight o'clock . Like, even at 7:30. And I'm not saying every day, but a couple times. You know, eight o'clock is a typical time for people to go to work. And as a teacher it would be nice to have one or two days where [the office is] open a little later or open an hour early, just to accommodate those working people."
A few parents observed that being able to easily access advice and support for their child helped them avoid unnecessary office visits and trips to the ER. Being able to talk to their physician when a medical need arose helped parents to think carefully about the best course of action and to determine whether home care was appropriate or whether the child needed immediate medical attention in the primary care office or ER. One parent said, "If I have a concern about [my child's] health, I know I can pick up that phone and I can call them and I can easily leave a message for their assistant, and they'll call me back, and they try to talk about [my] concerns and what I can do to get [my son] to feel better, or they suggest you need to bring him in, or you need to take him to the emergency room." Another parent liked that her entire provider's office is "always willing to have me call, and they'll either say, let's try and treat it this way [at home] or, yeah, he definitely needs to come in." Still another parent valued his provider's willingness to respond to his calls after normal office hours rather than simply sending him to the ER: "[Our physician] doesn't have office hours 24 hours a day; sometimes if we need to contact her, you know, sometimes she's just not there. But, she's been really good about being available even when she was not necessarily on service."
Parents appreciated their PCMH connecting them to community supports and other outside resources.
Several parents discussed ways in which their provider had facilitated a connection to important resources outside the office or sponsored various types of community supports to bring parents of CSHCN together.
One parent remembered that her primary care provider had told her about the Women, Infants, and Children program, which was able to provide the family with the expensive special formula that her child needed. Another mentioned that her provider had referred her son to Child Find: "She was a really big help on that, because they wouldn't call back, I was really struggling, and I felt bad because it wasn't really [the provider's area], and she took it all [over] and she called them and we had an appointment within a week, and I had been dealing with it for over a month at that time. She was very helpful on that."
One provider's office offered a variety of support groups and other events for parents of CSHCN, which the parents valued highly. One talked about an event that had been organized by the office's special needs clinic that she found helpful, particularly for her other children: "Once a year [the special needs nurses] organize a party of sorts where a lot of different businesses that [serve] the special needs community will come and have a booth. But it's a very informal event where the business will have a game for the kids to play . And then you just go through, enjoy all the different stations and games, and there's also a meal that's provided for families. It's supposed to be a lot of fun for the kids it was really neat for my [older] kids to get a positive [experience, like]; you've got a sister with special needs so you get this special thing It's not a bad thing to have a sister with special needs." Others talked about support groups provided for mothers and fathers of special needs children that "help to navigate not just problems of the child but of the family unit."