For a long time, research on asthma has been focused on the disease and its pathophysiology, the medications, and ways in which patients can be made more compliant. In comparison, little has been done to gather information on how patients perceive the disease and its treatment. As more and more attention is paid to helping patients to manage and control the disease, it becomes necessary to understand how patients view the disease, its exacerbations and medications. Understanding their view would permit health care professionals to better implement teaching techniques and educational approaches in the quest for guided self management.
Treatment guidelines are carefully compiled by experts who have an understanding of the current level of knowledge pertaining to the disease and its treatment. Their goal is to provide recommendations that would improve and help provide the best level of treatment for patients. However these clinical recommendations must be observed firstly by physicians and finally by patients.
The guidelines create expectations for what can be achieved with therapy. They have also brought media attention to focus on the disease and have created consumer versions of the guidelines together with bills of rights and lists of what patients can expect from health care.
Yet studies on adherence clearly indicate that patients are generally non-adherent. Why? Age, marital status, ethnicity and asthma severity have no association with adherence. Patients who are non-adherence tend to have more fears, anxiety and insecurity about their asthma and may use denial to manage the illness.1
There are many reasons for non-adherence, chief among them being the very nature of asthma. This is a disease that demands constant vigilance and attention. Even when they are well, patients must:
- perform regular self-monitoring
- note symptoms and assess their severity
- avoid triggers and monitor environmental changes
- modify lifestyle and their environment
- maintain records so that deterioration can be predicted and anticipated
- take medications even when feeling well
- use a variety of devices
- evaluate the potential risks and benefits in each new environment
- anticipate the possibility of exposure to triggers, and
- adjust medications, when necessary.
Unfortunately, this is not a one-time activity, but an on-going life sentence. Hence it is not too difficult to understand that patients have other priorities, and will, over time, forget what they have to do to keep the disease under control. Every exacerbation then becomes a wake-up call, and anxiety is compounded by the need to re-establish control. After symptoms have subsided, the patient has to determine what triggered the deterioration. This continuous cycle is the reality of living with a chronic illness.
Asthma disrupts lifestyles. It demands environmental control and avoidance of triggers. It is a stressful chronic disease. Stress affects the quality of life in asthma and is increased by both disease severity and socio-economic status.2 Poor asthma control substantially increases the level of impairment and lowers the quality of life.3
Patients fail to adhere to prescribed treatments for three major reasons.4 They include:
• Inconvenience arising from the daily requirement to take medication (with a variety of devices). The nuisance value increases when exacerbations require more medication more frequently.
• Lifestyle changes. This may involve quitting smoking, giving away pets, removing carpets, avoiding odors and other triggers. Trigger avoidance has social implications that may necessitate pre-medicating or avoiding situations where triggers (tobacco smoke, perfume, pets. etc.) are present.
• Dissatisfaction with health care personnel. Patients may have a high level of dissatisfaction with personnel who do not address patients’ concerns, ignore their needs and fail to meet their expectations of care. Studies have clearly shown that unless a patient’s fears and concerns are addressed, the patient will be unable to pay attention to the physician’s (or educator’s) advice.5 Fears and concerns are major barriers to education.
Responses to an exacerbation
While severity is not a benchmark for adherence, Jansen and Becker6 studied patients with severe asthma symptoms and found that more than 86% reported three or more reasons for delay in seeking medical attention. They identified seven reasons why patients did not seek immediate medical attention. In order of importance these included:
- minimisation (90%) – denial, refusal to believe, or failure to recognize its severity
- disruption (86.5%) – an unwillingness to interrupt the daily routine or a sleeping household
- uncertainty (74%) – in how to handle an exacerbation or to evaluate its severity
- “tough-it-out” attitudes (46%) – reluctance to accept help, or hope that the problem would disappear without treatment
- past experience (42%) – fear of hospitals or memories of unhappy encounters in ER
- steroid phobia (31%) – mistaken beliefs or fear of side effects
- economic factors (6%) – increased expenses, and lack of financial resources
Thus the reasons for delay could be grouped into two types: personal reasons (uncertainty, disruption, self-reliance); and reasons involving the health care system. Most importantly, the data showed how patients’ perceptions of their asthma exacerbations affected their decision as to whether or not to seek medical care. Yet the medical care can, of itself, be a barrier to future decisions to seek aid.
Patients make decisions according to their individual priorities and current needs. Factors that influence decisions include
- accessibility of care
- severity of asthma
- the prospect of dealing with uncertainty
- their knowledge about and ability to manage asthma and
- access to expert knowledge and therapeutic relationships.
This is a major concern. Patients with asthma are more concerned with quality of life issues and the side effects of medication than health care professionals may be aware. Health care providers have dismissed or minimized patient concerns about side effects. While most patients discussed the side effects of medications with their physicians, the general response from the physicians was that side effects were to be expected and that the benefits outweighed the risks. Provider-patient communication was lacking in ‘conceptual vocabulary’. Providers were reluctant to consider the patient’s story and to minimize medication dosages.7
Providers were more likely to adjust medications for adults by changing bronchodilators to another form of the same drug. For children, they made changes about one-fifth of the time to bronchodilators, and then only in dose or frequency. All this despite the fact that bronchodilator side effects were considered severe enough that, without consulting the provider, 24% of parents reduced and 14% skipped giving the dose to the child. 73% of adults discussed the side effects of bronchodilators but 33% failed to inform their provider that they had reduced their intake, and 24% actually skipped the dose in order to avoid the side effects. Many patients did not discuss the side effects of bronchodilators because they felt there were no alternatives.8
Providers were also not viewed as sympathetic, caring, willing to listen or willing to discuss the problem of side effects. Patients prefer the individualized approach rather than the ‘one size fits all’. Fewer than 4% of parents and patients stated that their health care providers were caring or sympathetic. Patients felt that their concerns about medication and the information they provided were ignored.8
It is important to remember that it is the patient who has the disease called asthma and who needs to be treated always as an individual and not a case number. Information should be provided on an individualized basis, discussing all their fears including that of the side effects of medication and the likelihood of death (very small and contingent on ignoring all aspects of care). Patients value face-to-face advice more than printed information.9 They also want periodic professional reviews of their medications so that they take the minimum of medication for maximum effect. If patient-centered care is to be the norm, then the patient’s perspective on their disease has to be an essential part of the dialogue.
- Kingler B, McKee MD et al. An Integrative Medicine approach to asthma: who responds? J Altern Complement Med 2012;18(10); 939-945. DOI: 10.1089/acm.2011.0540
- Archea C, Yen IH et al. Negative life events and quality of life in adults with asthma. Thorax 2007;62(20):139-46. DOI: 10.1136/thx.2006.065730
- Chen H, Gould MK et al. Asthma control, severity and quality of life: quantifying the effect of uncontrolled disease. J Allergy Clin Immunol 2007; 120(2):396-402. DOI: 10.1016/j.jaci.2007.04.040
- Taggart VS. Implementation of the guidelines: a patient’s perspective. Eur Respir Rev 1995; 5(26): 112-5
- Janson S, Becker G. Reasons for delay in seeking treatment for acute asthma: the patient’s perspective. J Asthma 1998; 35(5): 427-435
- Paterson C, Britten N. Organising primary health care for people with asthma: the patient's perspective. Br J Gen Pract. 2000; 50(453):299-303.
- Ostergaard MS. Childhood asthma: parents' perspective--a qualitative interview study. Fam Pract. 1998;15(2):153-7
- White MV, Sander N. Asthma from the perspective of the patient. J Allergy Clin Immunol 1999; 103: S45.
- Raynor DK, Savage I, Knapp P, Henley J. We are the experts: people with asthma talk about their medicine information needs. Patient Educ Couns. 2004; 53(2):167-74.