Putting power in patients’ hands–in the form of patient surveys and questionnaires–is having a positive impact on asthma outcomes.
For more than 10 years, asthma has been on the rise worldwide. First physicians, then public health officials, and, now, even governments have become concerned. On the positive side, the epidemic has spurred the development of several new pharmacologic agents as well as disease-management programs to help ensure asthmatic patients in large health plans receive state-of-the-art care.
Whether or not these measures are going to make a difference, of course, will require data, and that, in turn, will require documentation. To the ears of the clinician, the word documentation means charting–written assessments, progress notes, and other entries in the patient’s medical record that practitioners are required to complete as part of every episode of patient care.
Traditionally, documentation has been written by clinicians for clinicians. In asthma care settings today, however, it is apt to be the patient wielding a pen or sitting at a computer terminal. Providers are asking for a lot of information: How are the patient’s symptoms of chest tightness and cough? How about at night? How many days has the patient missed from work or school? How is the patient’s energy level and mood?
According to Donald A. Bukstein, MD, an allergist and pediatric pulmonologist at the Dean Clinic in Madison, Wis, in the past few years, many asthma care providers have introduced standardized patient surveys or questionnaires. Such tools are increasingly being used by clinicians managing patients over time. This kind of documentation enables a health plan to determine how well its asthma population is doing relative to specific standards yet in terms meaningful to patients in their daily lives.
The second expert panel of the National Asthma Education and Prevention Program (NAEPP) deserves much of the credit for this innovation, Bukstein says. Whereas the NAEPP’s first set of guidelines for asthma management, published in 1991, emphasized the use of objective measures for evaluating the ongoing management of asthma, the newer 1997 guidelines emphasize evaluating outcomes “in terms of patient perceptions of improvement, especially quality of life and ability to engage in usual activities.”1 The new guidelines even include tools–sample questionnaires and patient diaries–that providers can use to assess their patients’ satisfaction with treatment (Figure 1, page 68).
“The expert panel wants to encourage what we call effectiveness research,” Bukstein says. He sees an important distinction between evaluating efficacy and evaluating effectiveness. “In efficacy research, which is what we do as trialists, we try to show whether one drug is more efficacious than another drug or more efficacious than a placebo. In those studies, we use a tightly controlled environment and a tightly restricted, selected population,” he says.
What kind of result does the practitioner get, however, when he or she prescribes a drug in daily practice among patients who are not carefully selected, who may have comorbid conditions, who may not tolerate side effects, or who may not take medications consistently for economic reasons? “Something may be very efficacious but totally ineffective because no patient can afford it or it tastes bad,” Bukstein says. “So we think that effectiveness research is where you want to go. In this approach, you take into account the efficacy research in the literature but you combine that with outcome data to find the best way to treat a condition.”
How Are You Today?
Documenting patient outcomes is becoming a science in itself, Bukstein says. A central issue in that science is whether data are intended for use by a health care organization to document results in an entire asthma population, or by clinicians to manage individual patients. “Having an on-site assessment process is quite different from longitudinal monitoring of whole groups of patients,” says Martha Bayliss of QualityMetric in Lincoln, RI. According to Bayliss, who helped develop outcome tools for the Joint Council on Asthma, Immunology and Allergy, the tools themselves may be somewhat different, and the practical issues of implementing them will be very different. “Depending on the goals–and who is paying for it–the way these things are delivered can cover a whole spectrum, from a survey that is mailed out and mailed back, to scanning on-site, to touch-screen, to an Internet service that provides immediate processing,” Bayliss says.
Thus, outcome monitoring is more common on an organization level. “That’s the sort of thing I hear providers asking for. They say, ‘I need this data when I go to my HMO to negotiate a contract,’ ” Bayliss says. Point-of-service outcome assessment is more complex and not yet employed as widely. “To be part of clinical decision-making, a tool has to be able to ask how are you today, not how were you when you filled out your survey in your kitchen a month ago,” Bayliss points out. “But I think both approaches have tremendous value and can be means to different ends.”
According to Bayliss, both types of outcome monitoring have the same core components–data on the patient’s general, health-related quality of life and data on daily functioning specific to asthma. Both sets of questions can be incorporated into a questionnaire that also asks about any out- of-pocket expenditures for treatment and drugs, hospital use, missed days from work or school, and demographic information. The questions plus the scoring algorithms or scales constitute a tool that can be imbedded in a software product, Bayliss explains.
Her group has developed two test batteries and scoring algorithms, one for adults and one for pediatric patients, together known as the Asthma Outcomes Monitoring System. “The original goal of our AOMS program was developing the right questions to monitor outcomes specific to asthma,” Bayliss says. Her present, 15 asthma-specific test items yield six subscales that reflect different aspects of functioning and well-being in relation to the symptoms and treatment of asthma.
The first subscale deals with symptoms, the second asks patients how well they are able to do their normal activities, and the third involves mood and sense of well-being. “Then there is a scale that we call asthma energy, getting at fatigue or energy in relation to the condition. The last scale we call asthma confidence in health: To what extent is the patient worried about his present or future health in relation to asthma?” Bayliss says. The AOMS has been adopted by several vendors, all of whom employ mail-out, mail-back surveys, Bayliss says. “So far, no one has put a terminal in a physician’s office to do this particular questionnaire in real time,” she says.
Bukstein’s group, on the other hand, has developed a point-of-service system called the Asthma Report Card.2 The report card incorporates a widely used health-related quality-of-life survey known as the SF36 and a second set of questions relating specifically to the fluctuation and control of asthma. The Asthma Report Card also includes information on clinical outcomes such as hospital admissions, emergency department visits, acute episodes, and pulmonary function testing. Costs of treatment and medications are included on the report card as well, along with the number of days missed from work or school. Finally, the report card gives patients an opportunity to rate their satisfaction with their care.
All of this has been reduced to a 96-item, fill-in-the-dot questionnaire. The patient fills out the form at home or in the waiting room before an appointment, it is quickly scanned, and an analysis is printed out with several bar graphs for the patient and clinician to peruse together. The computerized outcome report was developed for the Dean Clinic by the Minneapolis firm, Velocity Healthcare Informatics.2
Ninety-six questions may sound like a lot, but according to Bayliss, monitoring outcomes at the point of care is not only more complex in practical terms, but it necessitates a greater degree of precision in the questionnaires themselves. “There are a lot of demands placed on developers of questionnaires such as the SF36. One is to make them as short as possible, since neither the patients nor the providers have time to deal with a large number of questions. At the same time, there is big pressure to make the instruments very precise,” Bayliss says. As she explains, questionnaires that will be used only to compare groups of people do not need to be as sensitive to changes as a questionnaire that will be used to track fluctuations in the condition of one person.
There is a formula that relates sample size–the number of people completing a questionnaire–to the margin of error and thus, the precision of the results. As the sample size gets bigger, the margin of error gets smaller, and precision increases. But as the sample size gets smaller–with the very same questions–the margin of error increases. “So in a big, big group you can get away with just a few questions. When you get down to N=1, you need a much longer questionnaire. Just think, you need a questionnaire that can tell you whether this one patient has significantly different outcome scores than last week or last month,” she says.
According to Bayliss, however, patients generally like filling out such questionnaires and do not complain about the length. On the contrary, they seem grateful that providers are asking for information on how asthma is affecting their life. “During our pilot study, many patients wrote in the margins, ‘Thank you for asking these questions,’ ” Bayliss says.
Bukstein finds that the questionnaire process has many benefits. “Patients report that it helps them organize their thoughts before they see the doctor. They are less likely to forget things they had planned to ask about,” he says. Because the questionnaire is administered in written form, patients’ responses cannot be influenced by tone of voice. According to Bukstein, patients also tend to be more truthful about such subjects as medication compliance than when they are questioned directly by a physician.
“In an office visit, both patients and physicians tend to focus on the ostensible reasons for the visit, but often take little notice of seemingly unrelated but important symptoms,” Bukstein says. “For example, a patient visiting a physician for routine medication renewal, without the questionnaire, might not make mention of emotional changes that have been affecting compliance with therapy.” The questionnaire process ensures that both the patient and the clinician are working from complete information.
The Role Of Primary Care Physicians
Although Bukstein’s original system was developed for the specialist clinic, his group is currently developing a counterpart for primary care physician, in recognition of that fact that about 75%o 800of follow-up care for asthma patients is provided by their primary care physician. The graphics provided by the system give both the patients and providers a convenient summary of a patient’s progress as a basis for making immediate, individual decisions. “This is really a clinical support system,” Bukstein notes. The system will include a checklist for the clinician based on the report card results. In this way, Bukstein hopes to put some of the expertise contained in the 1997 NAEPP guidelines into the hands of primary care providers.
Documenting patient outcomes and providing clinical support are closely linked activities, says Gail Grammatica, RN, MS, project manager in disease management programs at Tufts Health Plan in Waltham, Mass. As Grammatica points out, one important outcome variable that health plans always track–the severity of a patient’s asthma–is key to selecting therapy under the 1997 NAEPP guidelines. Her department has produced a wall chart for examining rooms in the primary care setting to help clinicians manage the changing condition of asthma patients in their care. Such items as routine immunizations, which are fundamental to primary care, are integrated on the chart with the algorithms derived from the revised NAEPP guidelines.
According to Grammatica, the guidelines are lengthy, and many primary care practitioners appreciate having such a synthesis. “The chart lists severities at the top and then below the different indicators–nighttime symptoms, lung function, education, and then therapy,” Grammatica says.
Tufts Health Plan, a network model managed care organization with 1 million members in four states, has developed an asthma education program called Breathe Easy.SM The program involves three home visits by asthma nurse educators from Olsten Health Services who assess the environment and provide asthma education. Patients are surveyed before they begin the process and after the three visits are completed. The surveys document improvement in the patient’s own assessment of their daily functioning and quality of life, such as missed days from work or school.
“We ask them first to classify what level of asthma severity they believe they have–mild, moderate, or severe–and we ask them if they know what causes asthma, if they understand what their medication is, if they understand the structure of the lung, if they know what triggers an asthma attack. We also ask them if they have had an asthma episode during the last 6 months. If they have gone to their physician, was it an urgent visit? Have they seen a specialist for their asthma or their family doctor? Have they been admitted to the hospital? What do they do when they need emergency treatment?”
The 1997 NAEPP guidelines urge providers to clearly communicate a self-management plan to patients to help them achieve adherence and satisfaction with care, Grammatica says. Not only is this important in itself, but it has a large impact on compliance with treatment. The Tufts Health Plan patients generally express satisfaction with the program, especially because they say they gain confidence and added knowledge of how to manage their asthma.
These patients’ comments bring home for Grammatica how much may be at stake for patients managing their asthma from day to day. To a great extent, the outcome is under the patient’s control. One of the most important outcome variables to measure, therefore, is whether the patient has a written action plan. “Whom would they contact if they had a problem with their asthma? What actions would they take?” she asks.
Providers who use some of these assessment tools, including patient surveys and questionnaires and action plans, can dramatically help improve asthma care outcomes, Grammatica says.
India Smith is a contributing writer for RT.
1. National Asthma Education and Prevention Program. Expert Panel Report II: Guidelines for the Diagnosis and Management of Asthma. Bethesda, MD: National Institutes of Health; 1997.
2. Bukstein DA. Practical approach to the use of outcomes in asthma. Immunology and Allergy Clinics of North America. 1996;16:859-888. r