"There's a wide range of challenges patients face to effectively manage severe asthma," said corresponding author Rachael A. Evans, FRCP, PhD. "Many of the psychological and social factors that influence patients' decisions when it comes to treatment are poorly understood. In this study we aimed to better define those factors so clinicians could better meet their patients' individual needs."
The qualitative study was conducted using semi-structured interviews by researchers independent of the patient's care. Patients were recruited from an adult Difficult Asthma Service, and were eligible if they'd been under the care of the service for a minimum of six months and if they met the severe asthma qualifications as defined by the British Thoracic Society/Scottish Intercollegiate Guidelines Network's Asthma Management Guideline 2014. Twenty-nine patients participated in the study. Data was analyzed using inductive Thematic Analysis, which identifies patterns in data.
Following analysis, four major themes emerged regarding patient perceptions about severe asthma. To represent consistency, 'many' was used to describe more than 65% of participants, 'some' to describe up to 65%, and 'few' to describe less than 20%.
Understanding of Severe Asthma
According to the study, many participants felt ill-informed about asthma and its severity, leading to a lack of confidence about how to manage this chronic condition. While acute care for asthma exacerbations receives a lot of focus, few participants spoke to the wider practices they used to manage their asthma day-to-day. Uncertainty about asthma and asthma management can lead to questionable treatment decisions and poor self-monitoring.
Additionally, some participants felt self-monitoring their asthma wasn't sufficient, citing that severe asthma can be unpredictable.
Emotional Impact of Living with Severe Asthma
Many participants described making personal adaptations and a restriction of activities due to their asthma, either due to individualized choices or under the recommendation of a healthcare professional. While these changes were perceived as necessary, restrictions often had a negative emotional impact. Fear and anxiety affected the decisions participants made about activities they engaged in on a daily basis, and participants expressed dissatisfaction with the restrictions they faced while managing severe asthma.
Concerns about hospitalization was another prominent emotional theme of severe asthma management. Some participants described reluctance to be admitted to the hospital, either due to a dislike of hospitals or fear of their likelihood of hospitalization. In the latter, fear that asthma symptoms would eliminate control over hospitalization became a source of stress. For some participants, the discussion around hospitalization gave rise to thoughts and feelings about the severity of asthma and their future death.
Additionally, two female participants described concerns about the impact their hospital admittance would have on family and work responsibilities, including childcare. Sometimes this led to participants postponing care even as asthma symptoms worsened.
Public Perceptions of Asthma
The study highlighted concerns about the perception of asthma by the general public and its implications for participants' quality of life. Many participants felt that asthma was perceived as a mild condition by the general public, which made them feel their suffering was not well-understood.
For some participants, these perceptions presented challenges in the workplace. Participants described hiding symptoms or feeling concern that their regular cough was irritating to co-workers. While practical support was available in the workplace, such as flexible working hours or time off for medical appointments, some participants found these accommodations created conflicts with their managers or colleagues.
Concerns About Medications
Concerns and discussion surrounding medications centered largely on oral corticosteroids (OCS). Many participants expressed concern regarding the long-term use of OCS, including side-effects related to liver health, mood changes, diabetes and more. Concerns about potential unknown long-term effects were also expressed.
Despite these concerns, only one patient described initial non-adherence to their prescribed medication and some participants viewed OCS medication as necessary for staying healthy. Even so, many participants described aspirations to eventually stop taking these medications without compromising their asthma control. Two participants described how occasionally these concerns led to reduced adherence without guidance from a medical professional, prompting acute asthma symptoms.
The Takeaways
Common across all of the major themes the study identified was a need for further education about asthma for both the patients and the general public. This study helps to demonstrate a need for additional patient education about the day-to-day management of their disease and when emergency care should be sought. Greater education for the general public, especially in relation to places of employment, should also be a priority.
Psychological and social support for patients suffering from asthma is lacking. Distrust and anxiety can lead to a lack of adherence, delays in seeking medical care and an overall higher rate of other mental health concerns. Healthcare professionals need to consider and discuss the perceptions each individual patient has about their asthma. By directly addressing each patients' unique challenges and referring them to additional healthcare resources as necessary, better self-management behaviors could potentially be attained.
"The decisions patients make about their asthma treatment is dependent on us providing the right support," said Dr. Evans. "By identifying the challenges our patients are facing, clinicians will be more able to provided individualized care to ensure patients practice better asthma self-management techniques. The latter will hopefully lead to improved asthma control and most importantly feeling better."
