The majority of patients seen by RTs have COPD. Shockingly, as many as 30% of these patients do not know they have a lung disorder, much less the name of it.
Everyone who has been practicing respiratory therapy for a while has heard the numbers and seen the graphs. Chronic obstructive pulmonary disease (COPD): the fourth leading cause of death in the United States, with expectations that it will climb to number three by 2020. COPD: more than 10.5 million people diagnosed.1 As of the year 2000, women have been dying from COPD at a higher rate than have men; 80% to 90% of COPD cases involve smoking as the primary risk factor.2 Nationwide, for many respiratory therapists who perform direct patient care, the majority of the patients seen have COPD. We are providing oxygen, aerosolized medications, and mechanical ventilation. We are drawing arterial blood and analyzing the blood gases. We are recording PFT measurements and sleep studies. We see thousands of COPD patients who receive care in the home. Our nation spent approximately $37.2 billion in 2004 for COPD.2 But we have a big problem: Many of these patients with a known diagnosis of COPD have little knowledge of their disease.
According to a recent study from the Netherlands1 that surveyed COPD patients regarding their knowledge of the disease, 30% of the 64 patients participating in the study did not know their correct diagnosis. Adding even more significance to this finding, 59% of these COPD patients had been diagnosed more than 10 years prior to the study yet did not know they had COPD. Another recent study from the United Kingdom3 used focus groups to gather information from COPD patients about their compliance with pharmacologic therapy and with health-related behaviors related to smoking cessation, exercise, and diet; 29 COPD patients participated in the focus groups, and, according to the British Thoracic Society criteria, five were classified as having mild COPD, 12 were classified as moderate, and 12 were classified as severe. The authors of this study report, The majority of patients understood that their disease involved their lungs. However, few had been given the name chronic obstructive pulmonary disease to describe their condition: I couldnt tell you [what the disease is called] because I havent been told. Ive just been given medicine and tablets and told to stay in. Some patients who had been given two names for their disease, for example, COPD and emphysema, were confused as to which one they had.
I have seen this problem firsthand in hospitalized COPD patients. For the past several years, I have participated in the initial assessment and evaluation of patients in order to begin managing their care under a local hospitals therapist-driven protocol system. Many of these patients were hospitalized for exacerbation of COPD, all were adults, and all had been receiving aerosol therapy in the hospital for more than 24 hours. As part of my routine, after entering the room and introducing myself, I would ask, Has anyone ever told you that you have any sort of lung disease, [such as] asthma, emphysema, chronic bronchitis, COPD? Some of these patients would know what they had and understood their diagnosis as we continued the conversation. A fair number of these patients, however, would say they had never been told they had any lung disease or would say they had been told they had some sort of lung disease, but they did not know exactly what it was. More than a few times I would hear, Someone mentioned something about that COPD thing, but I dont know what it is. Eventually, we performed a study to look into this, and I had the opportunity to report the findings at the 2005 AARC International Congress in San Antonio.4
For our research project, we identified 25 adult patients who had orders for aerosol therapy, and we obtained their informed consent to participate in the study, which had been approved by the Institutional Review Board. We gathered information on the patients cardiopulmonary histories from their medical records, verified that they were receiving aerosolized medications per physicians orders, and confirmed the diagnosis of COPD. We then interviewed the patients to assess their initial understanding of their disease. After the interview, patients received verbal teaching and written information on COPD, including basic anatomy, physiology, risk factors, pathophysiology, and a review of medications used to treat COPD. Three to 4 days later, we performed the same interview (either in person in the hospital or by telephone post-discharge) to assess the impact of the educational session and written information. We were able to repeat the interview with 21 of the initial 25 patients; we could not contact four patients who had been discharged. Two of the 25 (8%) patients said they had never smoked. For smokers in the study, the average number of years smoking was 38.7 with an average smoking rate of 1.3 packs per day. The average age of the group was 70.2 years. Sixteen were female, nine were males. Our findings pointed out several problems regarding patient knowledge and COPD:
2 of the 25 (8%) patients said they had never been told they had any lung disease.
16% said they had been told they had some kind of lung disease but did not know the specific diagnosis.
64% could not define the term COPD.
16% said that cigarette smoking was not the main cause
20% were not sure if cigarette smoking caused COPD
Combining the first two findings from above, 24% of COPD patients receiving therapy for their lung disease were lacking basic information on their disease statealmost one patient out of four. Regarding 12 statements on the interview describing specific signs, symptoms, and/or causes of COPD, the patients initial encounter correct answer mean was 8.68 (±1.68) and the post-teaching correct answer mean increased to 10.19 (±1.03), a significant improvement (P<0.0001). Our teaching for these patients was quick but effective in changing their knowledge of COPD. We provided a one-page handout that described COPD, giving a brief but detailed explanation (using text with simple illustrations) of the normal lung versus changes seen with bronchitis and emphysema. The handout pointed out that smoking is the main cause of COPD, encouraged smoking cessation for those who still smoke, and touched on treatment options for COPD (in particular, bronchodilator and oxygen therapy). We also spent some time with these patients teaching about the aerosol treatments (the names of the medications being given and why they were ordered) and oxygen therapy (if it was included in the patients care). We reviewed inhaler technique (if applicable) and answered their questions. Often, the patients family members were present and they were included in the teaching. Just before leaving the room, we reinforced the definition of C-O-P-D letter by letter and made sure there were no other questions. Every patient we talked to who was lacking this information was grateful to have someone explain COPD, the treatments, and therapy, and answer questions.
Patient education is not very time-consuming but can affect many factors in patients lives, from having increased motivation to quit smoking to being more compliant in taking their medications. Reinforcement of the basic information about their medications and review of their inhaler technique have the potential to provide better self-administered therapy at home, reduce exacerbations, decrease visits to the emergency department, and decrease hospital admissions. (We have seen this principle at work in the asthma population, and, as a result, patient education is supposed to be included with every asthmatic patients visit to the physician, clinic, or emergency department.5) In a recent review article from the American Journal of Medicine regarding COPD,6 the authors concluded, Evidence of poor adherence to therapy suggests that it is important to increase education and patient awareness of the value of maintaining physician treatment recommendations. If you do not have a good, basic patient teaching plan, why not start one? We make a difference in patients lives by providing high-quality care. Why not extend this to include high-quality educationespecially in the COPD population?
William C. Pruitt, MBA, RRT, is an instructor, Department of Cardiorespiratory Care, University of South Alabama, Mobile.
1. Boot CR, van der Gulden JW, Vercoulen JH, et al. Knowledge about asthma and COPD: associations with sick leave, health complaints, functional limitations, adaptation, and perceived control. Patient Educ Couns. 2005;59(1):103-9.
2. American Lung Association COPD fact sheet. Available at: www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=35020. Accessed December 19, 2005.
3. Jones RCM, Hyland ME, Hanney K, Erwin J. A qualitative study of compliance with medication and lifestyle modification in chronic obstructive pulmonary disease (COPD). Primary Care Respiratory Journal. 2004;13(3):151.
4. Dean J, Smith J, Pruitt B, Mulekar M. Assessment of COPD patients understanding of their disease and the impact of patient education [abstract]. Respir Care. 2005;50(11):1488.
5. National Asthma Education and Prevention Program. Expert Panel Report 2: Guidelines for the Diagnosis and Management of Asthma. Bethesda, Md: National Institutes of Health; 1997. Publication 97-4051.
6. Ramsey S, Sullivan S. Chronic obstructive pulmonary disease: is there a case for early intervention? Am J Med. 2004;117 Suppl12A:3S-10.