Refractory asthma: A case with a missing bridge between inpatient and outpatient specialty asthma care

Case study

Patient factors and experience can prevent adequate asthma care. We present a 38-year-old African American male with past medical history of atopic dermatitis, chronic rhinosinusitis, gastroesophageal reflux disease (GERD), type 2 diabetes mellitus (DM), and history of long-lasting uncontrolled steroid-dependent asthma.

Case:

The patient was a father to two young children with severe persistent asthma, severe atopic dermatitis, and multiple food allergies treated in our clinic. He was very skeptical in the first few visits and repeatedly said, “There is no hope. I know this disease. I grew up with it. They have very bad asthma and will grow up like me always short of breath and in the ED”. With time, as he witnessed his children’s asthma improving, his attitude slowly changed, and his trusted primary care doctor convinced him to make an Allergy appointment for himself. It took him 3 scheduled visits to finally complete one. He left the office twice before his visit was completed as he could not tolerate waiting in the examination room anticipating a physical exam or breathing test.

His asthma was diagnosed in early childhood with an estimated 2–10 annual asthma related emergency department (ED) visits. He had been intubated countless times for asthma and recalled spending days in the ED, hospital bed, or ICU in respiratory distress while frightened to death of needles. He rarely saw a pediatrician in the office and was never seen by a specialist as a child. This was partly driven by frequent gaps in his public insurance coverage, financial restriction for uncovered health care expenses and lack of access to safe transport. His poor asthma control, along with increasing safety issues in his neighborhood and the public sport facilities prevented him from playing his favorite sport, basketball. With repeated need for systemic corticosteroids and lack of exercise, he gained weight, developed DM in his twenties and, by age 35, was insulin dependent. In addition to his asthma, he was diagnosed with chronic rhinosinusitis and nasal polyps at age 30. Surgery was recommended, but he did not follow up with the Otolaryngologist due to fear of nasal endoscopy or surgery.

His initial spirometry in our office showed forced expiratory volume in 1 second (FEV1)/ forced vital capacity (FVC) ratio of 0.52, FEV1 and FVC of less than 40% predicted, and FEV1 with 25% reversibility after albuterol. His Asthma Control Test (ACT) score was 5 despite high dose inhaled corticosteroids, long-acting beta agonists, and montelukast. After long detailed conversation about options, he decided to try one of the “shots” his kids are on. We had to bring him in twice until he agreed with the first injection of dupilumab. He felt better when an African American nurse administered the injection, while his children held his hands. After starting dupilumab and good adherence, his asthma subjectively improved. His atopic dermatitis also subjectively and objectively improved significantly, which reduced his sleep and anxiety while improving his mood. Despite these improvements in his asthma and atopic dermatitis, continuity of care remained an issue. Due to his needle phobia (trypanophobia) he could not self-administer dupilumab, and he missed scheduled injections. Our front desk staff called him and rescheduled the appointment every time, always acknowledging his difficulties making it into the office, and, with these efforts, he returned to clinic. Slowly, his ACT score increased to above 15, while his FEV1 increased to 72 % predicted. While his asthma control remained suboptimal, he avoided the ED for longer than 6 months, which for him was a personal record.

African Americans bear a disproportionate burden of asthma, including a higher prevalence, higher hospitalization rates, and higher mortality¹. Studies have demonstrated racial differences in the words used to describe asthma symptoms² and health beliefs surrounding adherence to asthma medications³. African American patients may hold negative attitudes surrounding health care⁴ and are less likely to receive adequate medical information and be included in the decision-making process⁵. A shared decision-making model with healthcare providers, which is often missing, increases adherence to asthma medical (inhaled corticosteroid) therapy⁶.

Optimal asthma outcomes require understanding of the social determinants of health and individual’s experience that may impact the perception of the healthcare system. In our patient, his past healthcare experience led to his current reticence to seek medical care. In childhood, routine outpatient care with an asthma specialist could not be established after being discharged due to lack of adequate access to primary care and almost no access to a specialist in his community. Furthermore, his family were not aware of the specialty of allergy and immunology and its role in control of asthma.. This resulted in poor asthma control and more ED visits and hospitalizations. Extended wait times in small examination rooms and repeated intravenous therapies resulted in claustrophobia and trypanophobia. He reported how school and work absences led to productivity loss and isolation from his friends and recreational activities negatively affected his mood. Inadequate asthma education during his inpatient visits led to confusion about his home asthma medications. Conversely, he reports feeling blamed by his healthcare team for his recurrent asthma exacerbations. His experience is unfortunately not unique. Physicians are reported to be more contentious with African American patients, whom they also perceived as less effective communicators and less satisfied with their care⁷. Urban minority children have more asthma symptoms, more absences, poorer control, and more healthcare utilization yet lack access to specialists⁹. In patients with severe asthma, the relationship between the specialist who can follow them up in the outpatient setting and the patient should start during the ED visit or hospital admission to build trust and facilitate outpatient care. A trusted primary care physician can be a vital asset in bridging communication gaps. Furthermore, increasing the number of underrepresent minority nurses and physicians could reduce health care disparities because studies have demonstrated they exhibit less implicit race bias⁸. Taking a patient-centered approach during outpatient specialty visits is important to address their needs/misbelieves and create hope. This includes the entire healthcare workforce such as clerical staff, nurses, medical assistants, asthma educators, and physicians.

Practical Tips:

As asthma specialists, we must tailor our care to the individual patient and their perspective and relate to our patients with understanding for missed appointments and non-adherence to medications. Establishing a relationship with an asthma specialist who effectively communicates with the primary care and ED providers during an inpatient encounter can be vital in preventing prolonged lifelong uncontrolled asthma. This must start in the ED or at the time of discharge from the hospital and followed by making an appointment with the outpatient specialist who has preferably visited the patient during the inpatient or ED encounter. Making appointments for office visits that are compatible with the care givers’ and/or patients’ work schedule -prior to discharge- and calling families to be reminded before the appointment has facilitated transition to an outpatient specialist in our experience. Planning these visits during an inpatient encounter and involving social worker or case managers can address other obstacles such as transportation. Planning effective long-term treatment is dependent on patient adherence which is only possible through shared decision making (SDM) and creating rapport with patients and/or caregivers. Some of newer asthma therapeutics such as biologics that are given as injections are associated with more phobia which need to be discussed and planned through SDM. Furthermore, accommodations should be made, when possible, to address any phobias which have developed due to chronic and repeated frightening encounters during severe near-death situations in the ED and hospital. Other essential services include coordination with specialty pharmacy or alternative payor resources to ensure constraints with finances and medication delivery are addressed.