By David Stukus, MD
My question for the 13 year old patient and his family was a simple one: “How can I best help you?” I routinely ask this question at the beginning of visits to get the best sense of how to frame that day’s interaction. However, in this instance, my question was one of desperation. I had done everything I could think of to provide the best education and care for this patient but he had just returned from his fourth emergency department visit and third hospitalization for asthma, all in the past twelve months. I was out of ideas and honestly needed their help, and quite frankly, their involvement.
We see a predominantly Medicaid population at our tertiary care pediatric academic outpatient allergy/immunology clinic, located in the heart of Columbus, Ohio. Approximately 75% of the patients I treat do not have commercial health insurance. This population faces many challenges, which often interfere with the ability to gain good control of asthma, allergies, and other chronic health conditions.
I use all of my resources to try and provide the most up to date, evidence based, and thorough management, but for many of these families, none of it will matter. It’s not that they want to continue down the path of poor asthma control or frequent health care utilization. They don’t enjoy waiting in the emergency room for hours and having their lives disrupted by frequent symptoms and restrictions. They simply lack the resources necessary to provide optimal care for themselves or their children. This generally stems from a few main areas, which are highlighted below.
The most common reason for poor disease control is non-adherence with the treatment plan. Please note that this is very different from non-compliance, which insinuates a lack of desire to try the plan. Many of these families simply cannot adhere to the plan, even if they want to.
Factors affecting non-adherence are numerous but equally important. Poor understanding of the underlying disease, including pathophysiology, signs and symptoms, triggers, and when to start therapy or seek medical attention contributes to poor outcomes. Non-adherence can take the form of missed physician appointments, which approaches 25-30% of scheduled visits in some of my clinics. Non-adherence can be due to lack of obtaining medication from the pharmacy, whether it is due to financial constraints and prohibitive costs, or simple forgetfulness. Ongoing exposure to passive tobacco smoke, allergens, or other known irritants is a form of non-adherence as well, especially when environmental controls are a part of the treatment plan.
As you can see, one cannot simply assess ‘non-adherence’, but must truly delve into the contributing factors to gain a better understanding. This takes a lot of time and effort from the clinician and/or staff to first, be aware of these issues, and second, know how to identify and then address them. Many of my visits with patients who have high health care utilization for asthma boil down to simple questions such as “Who is in charge of making sure Johnny gets his medicine every day?”, “Where do you store the medicine inside your home?”, and even “Do you believe your child has asthma?” These, and similar questions, offer tremendous insight into what problem areas need to be addressed before even worrying about whether I am prescribing the appropriate level of therapy.
Low health literacy
Health literacy is not simply the ability to read, but whether an individual can use the information provided to them and apply to proper self-management. Not being able to read can certainly impact self-management, but health literacy involves understanding the diagnosis, signs and symptoms, proper use of medications, and indications to seek additional medical care. Some estimates indicate that more than a third of all adults in the United States have basic or below basic health literacy. This increases dramatically in certain demographics, including non-English speaking patients and the elderly.
There are several tools that I employ to help assess my patients’ (and their caregivers’) health literacy. One of my favorites is the “Teach Back Method” where I simply ask them to repeat back to me what we just discussed. This accomplishes a couple of things. First, it forces me to keep the information that I provide short, concise, and to the point. (Incidentally, being active on Twitter has been tremendous in this regard – keeping complex medical information to 140 characters is not that easy, but can be done!) Just because I have an in depth understanding of pathophysiology, differential diagnosis, diagnostic evaluation, and treatment options doesn’t mean patients need to hear every detail. Second, the Teach Back Method helps me assess whether they truly understand the most important factors about their health and treatment plan.
Another tool is the ‘Ask Me 3’ questions, which essentially has every patient, at every encounter, tell me what (their condition is/medication is), why (reasons to take their medicine and return for follow up visits), and how (when should medicine be taken, when should next visit occur, when should they go to pharmacy, when should they call for help). If we, as physicians, actively ensured that every patient could answer these simple questions before walking out the door, I have no doubt that satisfaction would increase and outcomes would improve.
The last main area to consider for health literacy is in regards to educational information. Many physicians rely upon written materials to supplement conversations held in the office. After all, we’re lucky to get 15 minutes with our patients before having to move on. However, this can actually add to poor understanding, if health literacy is not regarded. Written materials should be developed with health literacy in mind, ideally with the aid of an expert in this field. Reading level should be assessed, materials kept at or below a sixth grade level, and pictures should be used as much as possible. I was fortunate enough to obtain some funding through a private donation that enabled me to create asthma educational content (English, Spanish, and Somali translations) on a touch screen tablet that utilizes cartoons, videos, and interactive quizzes to deliver the same content previously handed to patients on a piece of paper. The response from families has been overwhelmingly positive.
This can be one of the most challenging aspects of care for families in lower socioeconomic classes. Patients receiving medical assistance often live in urban areas, close to highways or main transportation routes, and in public housing. This presents challenges in regards to ongoing exposure to irritants such as pollution/vehicle emissions, allergens such as cockroaches and mold, and passive tobacco smoke. Remediation is a challenge due to financial constraints and being at the mercy of landlords. Many of these families cannot afford air conditioning, which is a significant control measure for outdoor allergens and asthma triggers. Indoor heating may be substandard as well.
Another factor to consider for these families involves multiple care givers. There are many single parent homes and they must rely on other family members, friends, or other caregivers to watch their children while they work or attend school. It’s hard enough for parents to understand the complexity of treatment and avoidance measures for allergies and asthma, let alone other caregivers who may be unfamiliar with these conditions. Simple things such as making sure medications are transferred from one home to the next can easily get lost in the shuffle of a hectic schedule.
Lastly, some of these families may face other very real and dangerous pressures in their daily lives. This includes drug addiction, violence within the home, and extreme poverty. When these factors are combined with all of the other potential contributors discussed above, it’s easy to see why some patients may not regard their health as a top priority.
As for my patient at the beginning of this post, who I asked “How can I best help you?” I learned that mom is a single parent who works two jobs. She is often not available to monitor medication use or recognize symptoms when they occur. We were able to alter his regimen to once daily medications, administered in the morning before school and discussed practical recommendations such as setting cell phone reminders, storing medication next to the tooth brush, and ‘orange = daily, red = rescue’. We arranged to have his grandmother accompany them to the next visit as she is his primary caregiver after school and on weekends. I learned that she was always taught not to use rescue inhalers for asthma until an absolute last resort and we addressed this misconception. I also learned of grandmother’s fondness for scented candles to help remove the smell of fried food from her apartment, both huge asthma triggers.
Will these conversations be enough to prevent future hospitalizations for my patient? Time will tell. But unless these areas are acknowledged and addressed, he won’t stand a chance at success.
I cannot give this important topic justice in 1,500 words. However, I hope this at least provides new insight into the very real challenges that many face on a daily basis, challenges that interfere with their ability to achieve good control of their health.
David Stukus, MD, is board certified in Allergy/Immunology and is an Assistant Professor of Pediatrics at Nationwide Children’s Hospital and The Ohio State University in Columbus, Ohio. His clinical and research interests focus on asthma and food allergies, especially improving education and adherence for patients and families. As part of his research, Dr. Stukus has created novel technology and educational tools using mobile health apps to improve the care of patients, for which he was recognized with the Nationwide Children’s Hospital Department of Pediatrics Junior Faculty Award in November 2013. Dr. Stukus has been an active member of the medical advisory team for Kids with Food Allergies since 2009 and was elected to the Board of Directors for the Asthma and Allergy Foundation of America in 2014. Lastly, Dr. Stukus actively engages with food allergy support groups and participates in social media on twitter through @AllergyKidsDoc.
Photo by 700childrens.nationwidechildrens.org