It’s chronic
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
Cost
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, Associate Chief, Division of General Pediatrics
Noncomplaince
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, Associate Chief, Division of General Pediatrics
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, Former Community Asthma Programs Manager
Engaging the family
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, Former Community Asthma Programs Manager
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, Division of General Pediatrics
Housing problems
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, Community Asthma Initiative
Heat or eat?
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
When it all falls into place
When it all falls into place, it’s very rewarding. When families contact me when their child’s having symptoms and they want some advice about what to do, and they already have in their heads what’s going on, what information they need to tell me, what they think they want to do about it. That sense that they’ve gotten it, they’re empowered and they know what to do, and it’s not so much me telling them what to do but them figuring it out and checking in, that I think is really a key reward for me.
Shari Nethersole, MD, Pediatrician
Seeing a kid go without an ER visit
For me, one of the most rewarding experiences is seeing a child who was previously in the Emergency Room every other month go for a year without an ER visit. This usually is the result of a combination of efforts, including home visits, measures to reduce environmental triggers, coordination with the primary care provider and often a referral to an asthma specialist with follow up phone calls or visits to see how it’s all working.
Susan Sommer, RNC, NP, Community Asthma Initiative
When everyone’s life improves
Having a child with poorly controlled asthma is incredibly stressful for any family, but especially for families without resources. It affects everyone in the family in terms of their quality of life. When we are able get the child’s asthma under control, everyone’s life improves and the family has much less stress, which is nice to see. Children and parents can sleep through the night, kids can go to school and play and run around and parents don’t miss so much work or can go back to school.
Susan Sommer, RNC, NP, Community Asthma Initiative
Developing relationship with patients
I think one of the most rewarding things about working with adolescents with asthma is that you can develop a relationship with them so that they will feel comfortable calling you if they have questions or concerns. Adolescents who meet you during a clinic visit get to know you, and will feel more comfortable thus they may contact you sooner to be evaluated when sick. Adolescents always feel more comfortable revealing information and asking questions if they are familiar with a nurse.
Kathleen Waddicor, RN, BSN, Division of Adolescent Medicine
Knowing you made an impact
When kids ring my doorbell at Halloween and recognize me by shouting “Hey, you’re the asthma nurse!!” or when parents come up and smile and say “I know you from asthma camp. My child got so much out of the experience and now they’re enrolled in a swim program and playing soccer. They’re doing so much better!” When you receive that kind of feedback from parents – that you made a positive difference or helped them better help their kids – their “thank you” is the greatest reward I can receive. If I can help enhance the quality of their kids’ lives so they’re able to sleep through the night, not miss any school, and be able to play like every other kid and be happy, then I’ve accomplished something important.
Amy Burack, RN, MA, AE C, Former Community Asthma Programs Manager
Tough road, but worth it
Teaching appropriate disease management in a culturally and linguistically diverse community isn’t always easy. It can be a tough road with many variables. There’s a lot of incorrect information out there that people listen to, rather than seeking or heeding the advice of their health care providers. They get mixed messages. Our goal is to feather that all out and help parents establish a clear and understandable treatment path that is in the best interests of the child and his/her family. When you can get a family to attend an education session, though, and they leave telling you they’ve learned something valuable, to me that makes it all worthwhile.
Amy Burack, RN, MA, AE C, Former Community Asthma Programs Manager