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Allied Health: Articles of Interest Asthma: the patient’s perspective Asthma demands constant vigilance and attention. Even when they are well, patients must:
Unfortunately, this is not a one-time activity, but an on-going life sentence. 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. Impact on lifestyle
While severity is not a benchmark for adherence, there are many reasons why patients delay seeking medical attention despite escalating symptoms. Of patients surveyed, 87% reported three or more reasons for delay. In order of importance they listed:
Patients’ perceptions of their exacerbations determined their decision about seeking medical care, which in itself was a barrier to future decisions to seek help. 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. Medication side effects 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. Seventy-three percent 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. Providers were also not viewed as sympathetic, caring, willing to listen or willing to discuss the problem of side effects. Fewer than 4% of parents and patients stated that their healthcare providers were caring or sympathetic. Patients felt that their concerns about medication and the information they provided was ignored. Role of the asthma educator Educators can lessen fears by discussing them openly. Stories in the media have made many patients fearful of death from asthma. Death is not a predictable outcome for asthma. It can happen when severe asthma is ignored or untreated, or from a sudden overwhelming exposure to triggers, but this is rare. The educator should discuss all aspects of the medications, including side effects, time to effectiveness, etc. Patients value face-to-face advice more than printed information, and they also want periodic professional reviews of their medications, etc. Finally, the educator should work with patients on an action plan. Patients could pretend they are having an exacerbation. The educator could then coach them through the steps they should take to relax and reduce symptoms. They should be reminded about signs and symptoms that indicate a need for professional medical help. After this rehearsal, the educator should formulate an action plan that tells patients, in writing, what to do, when to do it, and when to get help. While reinforcing what has been taught, such an approach will clearly indicate to patients that their input is critical to the success of the action plan. Further, it will give them some sense of control while helping them feel prepared for the next exacerbation. At each subsequent visit, the action plan should be fine-tuned to ensure that it meets current needs. Education is not merely about providing knowledge. Its goal is to bring about changes in patient behavior. The educator must help patients believe that they know what to do and when to do it, and to have the confidence to implement the action plan. When personalized plans are combined with a caring attitude that seeks to help patients and lessen their fears, then guided self management becomes an attainable goal. References 1. Taggart VS. Implementation of the guidelines: a patient’s perspective. Eur Respir Rev 1995; 5(26): 112-5 2. Janson S, Becker G. Reasons for delay in seeking treatment for acute asthma: the patient’s perspective. J Asthma 1998; 35(5): 427-435 3. Paterson C, Britten N. Organizing primary health care for people with asthma: the patient’s perspective. Br J Gen Pract. 2000; 50(453):299-303. 4. White MV, Sander N. Asthma from the perspective of the patient. J Allergy Clin Immunol 1999; 103: S45. 5. Ostergaard MS. Childhood asthma: parents’ perspective—a qualitative interview study. Fam Pract. 1998;15(2):153-7 6. 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. |
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