Enhancing compliance among asthmatics
In my opinion, the family is the lost secret of asthma compliance,” declares Donald A. Bukstein, MD, an allergist and pulmonologist at the Dean Clinic in Madison, Wis. As Bukstein points out, over the last 20 years, the health care system has moved in the direction of managed care. “Maybe that is the direction we had to take for reasons of cost. But we have to realize what it has done to the way we interact with patients and families,” Bukstein says.
In the past, a primary care physician–or even an asthma specialist–would take care of an entire family. The family would stay with that practitioner over a long period of time. “But with managed care, individuals move between one plan and another and we just don’t have that kind of longitudinal relationship,” Bukstein says. “Now we have physicians who really don’t know the patients or their families, and I think that has had a very negative impact on compliance.”
It is not uncommon for a patient to change providers every year. According to Bukstein, this is especially true with Medicaid. “Medicaid moves patients between managed care plans frequently. They can move at any time. We may have a patient for a month or two, and the next month they go to another plan,” he says. Medicaid patients as a whole also have more problems with compliance, something that Bukstein believes is frequently due to a lack of family support for the asthma regimen. “The problems we see don’t always come down to bad environmental conditions or access to care. Even when we provide appropriate therapy, patients don’t always have the psychological support they need to take those medications and follow through on treatment,” Bukstein says. What he would like is continuity–a chance to get to know the family and work with them over time.
According to Margaret Reid, RN, asthma education coordinator at the Dimock Community Health Center in Boston, practitioners who are serious about achieving compliance need to be realistic about what they are asking families to do. When it comes to pediatric patients, families have to purchase medicine, help their child follow the medication schedule, and–perhaps most difficult of all–remove allergic triggers from the home. “The new National Heart, Lung, and Blood Institute (NHLBI) guidelines have a much more ‘real world’ focus in this respect,” Reid says.
Her program offers a service in which she goes to the home to identify environmental exposures and help the family make changes. “We offer this as an option, it is not something families have to agree to have,” Reid says. She tries to reassure them that she is not the “housekeeping police.” Rather, the purpose of the home visit is to find ways to make the environment better for the asthmatic members of the family. As Reid explains, health care providers can frequently influence reluctant landlords to fix leaks, spray for cockroaches, or provide heat. “We have many clients in public housing, and there the problem is not so much lack of heat as too much heat, which makes the apartment steamy and damp in the winter,” Reid says. Carpets are a more difficult challenge, as it is almost impossible to get landlords to agree to remove them. However, according to Reid, carpets can be cleaned and covered and there are solutions that can be applied to kill dust mites.
“Sometimes people get overwhelmed with how much they need to do,” Reid says. She encourages them to concentrate on accomplishing just one thing at a time. “Otherwise, they may be so overwhelmed that nothing gets done,” she says. Furthermore, if the parent does make changes and sees that there is improvement in the child’s asthma, that parent is frequently energized to do more. “So I often have them concentrate first on the room where the child sleeps,” Reid says. For example, if there is a pet in the family and the family cannot bear to give that pet away, the next best thing is to make sure the pet does not go into the bedroom. If there is smoking by a parent or other family member, and that person is unable to quit, Reid negotiates smoking boundaries to protect the child.
“A lot of compliance problems don’t have to do with the family, they have to do with us–the providers,” Reid says. “People need to understand why they need to take medication, they need to understand how to take the medication, and they need to understand when to take what.” As Reid points out, the new NHLBI guidelines specify that patients be given a written care plan. Otherwise, even if practitioners explain everything at length, patients are likely to get home only to discover that they are confused about crucial details. “With the new regimens, the care plans are quite complicated. It is very important to write things down for people,” Reid says. She also follows up by phone the next day, in case the family have any questions.
She also tries to determine the feasibility of the care plan in the context of the family’s daily schedule. “You can’t give a medication, tell the parent that the child has to take this four times a day, and not even think to ask where the child is going to be in the middle of the day,” Reid says.
Cost is, of course, another factor. “Even for people who have insurance, if they have co-pays, it adds up fast. If the co-pay is $10 and you have 6 medicines, that’s $60. Even if the co-pay is only $5, 6 medicines are $30,” Reid says. Some of her clients belong to an HMO with excellent coverage for drugs. “Yet we still have to try to find them free medicines–and this is people who have insurance!” Reid says. It might be a sensitive subject, but Reid believes that practitioners should try to address the cost of medications with parents. She recalls a mother who was especially committed to helping her child’s asthma. “She brought the child for every follow-up visit and did everything we asked her to do. But the child kept getting sick. Finally we realized that the mother had so many prescriptions to fill that she could never afford to fill them all at any one time. She always had to leave something out, and we weren’t aware of that,” Reid says.
She has discovered that it is also important for providers to be aware of all the environments where the child regularly spends time. “If a child spends part of the week with a grandparent or aunt, or spends weekends with another parent, all those adults need to be educated about asthma. They need to understand the care plan and be invested in that plan,” Reid says. If there are pets, or someone smokes, or the child needs help with medication at a relative’s house, providers need to bring those extended family members into the care process.
According to Bukstein, physicians are not doing a patient any favors by trying to avoid making an outright diagnosis of asthma. “Sometimes physicians feel that if they make a diagnosis of asthma in a young child, it may affect the family’s insurability,” he says. In actuality, he believes it does not. “When the family moves, they may have an exclusion for a preexisting condition for a year, but that’s about the extent of it,” Bukstein says. Nor does he believe the substitute diagnoses fool many insurance companies. “But if you let the diagnosis slip, not only does it confuse things and therapy isn’t as good, but the earlier you get kids diagnosed, the better they do,” Bukstein says. “If you can get them into good habits at an early age, especially if you have a good supportive family, those kids may go through something of a rough time in the teenage years, but they tend to emerge in good control,” Bukstein says.
In his view, the sooner a diagnosis is made, the sooner the child can start to cope. According to Bukstein, accepting the need to cope may benefit the child in unexpected ways. He sees this in studies of diabetic children. “Those children are better performers in school and beyond, in the workplace. They are better organized, presumably because they understand that there are just certain things one needs to take care of,” Bukstein says. A follow-up study of children who attended diabetic camp had similar findings. “Controlling for socioeconomic status, the researchers found that children who attended diabetic camp and learned how to take care of their disease also were more likely to have attended college and become professionals. The children who did not go to diabetic camp had more problems, could never comply, and had a lot more disease in 20 years,” Bukstein says. Researchers attributed the differences to the camp, where the children learned how to take care of a chronic illness and manage their time.
“The same goes for asthma. When we get kids early on, they learn how to take their medications and it becomes a habit. When I see them again, through the rest of their lives, this continues. They may have more severe asthma from a pulmonary function point of view than somebody else, but they actually do much better because they have learned how to control it,” Bukstein says.
According to John Jayne, MD, of Asthma and Pulmonary Diagnostic Associates in Absecon, NJ, adolescence is the worst time to develop asthma from a compliance standpoint. Adolescent males are the most difficult patients. “It is very hard for them to admit that they have anything wrong,” says Jayne, who treats patients 12 and older. He finds that males in general have more difficulty with compliance. “Even if they do take the therapy and start to feel better, they tend to backslide,” Jayne says. “The male perception of taking medicine is to equate that with being sick. Being sick is equated with having something wrong with you–and that implies inferiority,” he explains. Adolescents in particular are more in denial, so Jayne shows them their test results. “If you can show them that when they take their medicine, their baseline values at a follow-up visit are better, then you have something to work with,” he says.
In younger adolescents, peer pressure is important. But, according to Jayne,”as asthma becomes more prevalent, more people are familiar with using inhalers, and negative peer pressure on adolescents is now infrequent. In fact, using an inhaler is more likely to add to one’s image. You’re part of the cool group,” Jayne believes. He also tells his adolescent patients that people with asthma tend to have higher IQs and excel in individual sports where they can focus on achieving their personal best. “I use the example of a wrestling match. A nonasthmatic will say to himself, ‘I’ve got to beat this guy.’ But an asthmatic will say, ‘I want to win–or else I want to do the best I can,’ ” Jayne says.
It is a personality type he has seen over and over among asthmatics. Jayne likes to share this observation with his adolescent patients to encourage them to see their asthma in a positive light. Since adolescence is dominated by a search for identity, the discussion addresses that need at the same time as it introduces the theme of managing a chronic condition. It also helps to establish an alliance between the patient and the physician.
Since adolescents want to be independent of their families, Jayne usually sees adolescents without the family present. “I try hard not to bring the family in unless we are dealing with a very noncompliant patient. In the case of a noncompliant male, I do need to see the spouse and in the case of a noncomplaint adolescent, I do need to see the family to make sure that they understand the use of the rescue inhaler and the written action plan,” Jayne says.
Bukstein, too, generally tries to get adolescents to come in without their families. “We try to take advantage of their need for independence,” Bukstein says. He does not like to admit it, but he usually tells adolescents that he is checking up on their compliance. “I tell them that I can find out if they are refilling their medication and I can also do a lung test, which will be better if they are taking their medication,” Bukstein says. “I tell them I want to be proud of them, and I know that they can do this.” He tries to focus on the immediate advantages of being in control, such as an easier time in sports or gym. “And for our refractory teenagers, we sometimes send a cab to school to bring them for their follow-up visit. Right after class, the teachers put them into the cab–otherwise they disappear,” Bukstein says.
For young children, on the other hand, he finds that it often helps to ask the family about the patient. “Often the child will have defense mechanisms in place, so we don’t get as much information talking to the child as we do talking to the parents,” he explains. For example, a child may brush off any concern about having frequent attacks or going to the emergency department, whereas the parents may express a lot of anxiety. Since anxiety can interfere significantly with learning, this is something to keep in mind when going over treatment plans with parents.
In a study Bukstein’s group conducted among parents of infants with asthma, when the child was treated, the parents’ measured quality of life improved significantly. “When I first presented these findings, people were skeptical, but the results have since been reproduced by several other investigators,” Bukstein says. “When the child got treated, the parents got better in aspects of quality of life–mental, social, physical functioning. You can imagine that if you have an infant that is wheezing, and you are up at night, it can be quite distressing,” Bukstein says.
He tries to support families in multiple ways. For example, his clinic has a supply of videos that can be borrowed; it holds asthma fairs to which parents and other relatives can come; and Bukstein encourages brothers and sisters to come to the clinic along with their siblings. Sometimes he gives the older siblings “jobs” as well. “I may say, ‘Alan, I want you to make sure that Sherrie takes her Claritin; and Joey, your job is to make sure that she takes her inhaler every morning.’ I give them a chart and tell them that I want them to fill it out. ‘When you come back, you show me your chart and you’ll get a treat.’
“So we try to develop small ways of involving everybody and of keeping the younger children, especially, on task. Once they get the habit down, they are pretty good about it. Of course, this is simply what occurred naturally over the years when doctors saw everybody in the family over and over again. But now, with the medical system as it is, we don’t have the continuity,” Bukstein explains.
These changes are unfortunate because, as Bukstein points out, asthma is a familial disease. When he gets a new patient, he often recognizes that he has seen their siblings, or parents, or even extended family members such as cousins, uncles, and aunts. Jayne agrees. “When you diagnose asthma in one member of a family, there is a very great likelihood that another family member also has it, although they may not have it to the same degree,” Jayne says. This is why he likes to sit down with the family and go over the graphs and results of the initial diagnostic testing on their family member. “Not only will this enable them to understand the mechanisms of the disease and how the medications work, but it often awakens them to the fact that they themselves or someone else in the family also has asthma,” Jayne says.
According to Bukstein, breakdown of the family is having a major impact on asthma compliance among children. “When you have two people warring over a child, that’s not helping the child manage his asthma,” Bukstein says. In his view, parents should want to come together to find out how to help the child manage asthma. But in their conflict with one another, too many divorcing parents seem to completely disregard their child’s needs.
There are even court battles over whether one of the parties will be allowed to smoke around the child. “I probably have a dozen cases like this now,” Bukstein says. He was talking to one of the lawyers recently when he broke off exclaiming, “It is crazy that we are even discussing this. There’s no issue here. You just don’t smoke in a house where a child has asthma.”
“I’m not saying that all divorce is bad, because some divorced parents do a great job. What I am saying is that breakdown of the family often impacts on the child’s chronic disease. At least if you have a family that is together, they may not like one another all that much, but at least they are together and unified in supporting the idea of treating the asthma and of this child getting better,” Bukstein says. N
India Smith is a contributing writer for RT.