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Challenges
It's difficult because asthma is a chronic disease, and you can't say, “Don't worry; this will all blow over in a few weeks and then we won't have to see you anymore.” Asthma can tire out the patients, and sometimes it causes so many problems that patients have a hard time seeing the light at the end of the tunnel. Kids with severe asthma end up in the hospital frequently, they miss a lot of school, they have to take medicines which have side effects which are sometimes disturbing (oral steroids can cause weight gain and high blood pressure and problems with the eyes). It's sometimes hard to treat people chronically for a disease that causes lots of lifestyle disruptions, and where the medicines can cause side effects. Hans Oettgen, MD, PhD, Associate Chief, Division of Immunology, Children's Hospital Boston An increasing problem with preventive medicine is its cost. A lot of families who aren't on public insurance have very high co-pays because the preventative medicines are all in at least tier two if not tier three, so it could cost between $20 and $30 a month for these medications, and if they also need an antihistamine and Singulair, pretty soon a family might have $100 a month in co-pays.Joanne Cox, MD, Medical Director Children's Hospital Primary Care Center, Associate Chief, Division of General Pediatrics, Children's Hospital Boston One of my biggest frustrations is that some patients do not take their preventative medications, and then I seem them repeatedly go to the emergency room. It's hard to get underneath that so that we can get it better controlled. I have families that are absolutely dedicated to always using all the medications and watching peak flows, and those kids don't have to go to the hospital as often. I do think that for most kids hospitalizations are preventable, but we have an inability to prevent those for our less-compliant families.Joanne Cox, MD, Medical Director Children's Hospital Primary Care Center, Associate Chief, Division of General Pediatrics, Children's Hospital Boston Empowering families to advocate for themselves A huge obstacle for many families is their inability to control housing conditions that impact negatively on their child's asthma. When you live in a housing situation over which you have little or no input or control, it's totally disheartening and extraordinarily frustrating. For those families wanting to challenge the system, there is a tremendous fear of landlord reprisal. Families would love to call the Public Health Department or Inspectional Services to report safe and sanitary violations or problems that make their child's breathing condition worse, but worry that their landlord will evict them in retaliation. Part of our work is to help empower people to advocate for themselves- to learn about their housing rights and not be afraid to speak up for fear of adverse repercussions.Amy Burack, RN, MA, AE-C, Community Asthma Programs Manager, Children's Hospital Boston One of my biggest teaching challenges is helping families to understand the difference between the underlying disease process of asthma and the symptoms that present themselves when the “process” gets triggered into a worsening flare-up. The concepts can be hard for some to learn and are made more difficult when the educator doesn't speak the same language as her audience. I don't speak Spanish or Portuguese or Haitian Creole, which are languages common to the community that I serve. Groups that invite me to present asthma workshops are wonderful, though, about providing me a translator. Either way, I'm mindful of the language barriers that exist and try to compensate by obtaining as many materials and resources as I can in a variety of languages.Amy Burack, RN, MA, AE-C, Community Asthma Programs Manager, Children's Hospital Boston Families need to understand that good asthma management is something that they can, and should, have a role in. It's particularly import when it comes to maintaining environmental control and supporting medication therapy. I frequently tell parents that “Our role is to give your child the least amount of medication for the shortest period of time.” We do that by assessing the frequency and severity of symptoms. For that to work, it means parents and family members paying closer attention to changes in the child's breathing and documenting those changes in a symptom diary or a notebook of some kind. Over time, the family will have collected a significant body of “data” to share with me or other health care providers. It not only informs the treatment plan and care options, but engages the family in the process of this disease.Amy Burack, RN, MA, AE-C, Community Asthma Programs Manager, Children's Hospital Boston Not treating asthma in isolation I think that one of the challenges of working with kids who have asthma in a Primary Care setting is that we can't treat asthma in isolation— often the visits are for Well-Child visits or there are multiple complaints and not related to asthma. So maybe we're trying to address the asthma but the child's school problems, or their ADHD, or their weight, or some other problem comes up, and it's not like we have an intensive period of time in which just to do asthma teaching. I think our visits are also shorter than some specialist visits, we see more patients per unit time, so it's very challenging to do the work here.Joanne Cox, MD, Medical Director Children's Hospital Primary Care Center, Associate Chief, Division of General Pediatrics, Children's Hospital Boston I would say that housing is by far the biggest and most difficult issue for the families I see (the urban poor). Solving housing problems involves a lot of advocacy and collaboration with many agencies, such as the Boston Public Health Commission and Inspectional Services, to try and improve living conditions.Susan Sommer, RNC, NP, Nurse Case Manager, Community Asthma Initiative The thing I find most challenging in this day and age is that insurance companies often charge high co-payments for daily asthma medications. This year we will get to the point where Albuterol will no longer be generic— it will all be name brand and therefore there may be a higher co-pay. We no longer have generic inhaled steroids— they are all second tier co-pay. For a lot of the working class poor, $50 co-pays for an inhaled steroid or for Albuterol are difficult to afford. There are many families who have to decide whether they're going to pay for their child's medicine, or for food, or for heat. It's “Heat or eat?” and it's a terrible position for anyone to be in. That's a big frustration of mine. We need to continue to lobby the insurers, and if necessary the legislature to make asthma medications more affordable.Beth Klements, MS, APRN, BC, Asthma Clinical Nurse Specialist, Pediatric Nurse Practitioner The idea of preventative therapy can take some time Also, the concept of taking a medicine when you don't have symptoms can be challenging for some of these families to grasp. Most people understand that when you're sick you're going to take this medicine, it's going to make you feel better. But the idea that you have a chronic disease where you have to take medicine every day to actually prevent something from happening is not necessarily intuitive for folks, and getting them to understand the idea of a preventative therapy can take some time. Shari Nethersole, MD, Pediatrician, Department of Medicine |
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Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated: June 5, 2007 |
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