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Patient education, self-management plans and peak flow measurement
Resph'atotT Medicine ( 1991 ) 85, 457-462
Patient education, self-management plans and peak flow measurement R. A. L. BREWIS
Royal Victoria Infirmary, Newcastle upon Tyne NE1 4LP, U.K.
Variation in severity from time to time is a characteristic feature of asthma and most physicians believe that corresponding variation in the level of treatment is appropriate to minimize the risks and unpleasantness of acute and chronic asthma and at the same time minimize the risk of side effects of treatment. Most exacerbations can be ameliorated or aborted if proper changes to treatment are made in good time. It is obviously very restricting for a patient to be required to consult a doctor every time a change in treatment is required. Common experience suggests that patients delay taking action when asthma is worse and, in particular, they put off seeking the help of a doctor. Delay in making appropriate changes to treatment and seeking help has been identified as one factor contributing to apparently avoidable deaths from asthma (1). The range of possible steps taken by doctors in the management of most patients with asthma is fairly limited and the reasoning behind their recommendations is not complex. There is thus no inherent reason why patients should not be trained to take these steps themselves. There is a need for education sufficient to permit the patient to adjust the treatment promptly, appropriately and s a f e l y - t h a t is, to take the steps that would have been taken by the doctor if perpetually present.
Patients' Understanding of Asthma and its Management Most investigations into the level of understanding of patients with asthma about their condition have found a very poor level of knowledge and a low level of essential skills sometimes coupled with inappropriate strategies for coping with worsening symptoms (2-5). Poor understanding is very often combined with a feeling on the part of patients that they have not been told enough about their treatment. 0954-611 I/91/060457+ 06 $03.00/0
Studies of Patient Education It is a feature of patient education programmes in chronic diseases that where the programme aims merely to increase knowledge there is usually no effect on the patient's actions and thus no effect on disease activity or the resulting disability (6). Most 'knowledge' programmes also have the characteristic of being applicable to patients in general rather than specifically adjusted to the requirements of an individual. Knowledge programmes tend to be tested by questionnaire and the common salutory finding is that, although there is usually an improvement in knowledge, this fades quite rapidly over minutes or hours and often disappears completely over months. To be effective, educational activity must cause the patient to take clearly described steps rather than follow certain broad principles. Such programmes have been termed 'behavioural' (6) but will be referred to as 'specific directions" or 'self-management plans' here. The assessment of their effectiveness should centre on assessment of disease severity. Studies of Patient Education in Asthma Most published studies on the effect of education in asthma have been carried out in children or their parents. A wide variety of methods has been employed (7) varying from simple interviews to videotapes and computer games. The extent to which the educational measures alter disease control has varied. In some studies (8), despite considerable effort to improve knowledge (e.g. 6-h long discussion sessions in small groups), there has been no decrease in the use of emergency medical services for asthma and no lessening of disease severity. In other studies (9-11), these indices have shown improvement. The relevance of experience in childhood to education of the adult patient with asthma is uncertain. Firstly, asthma is more responsive to treatment in childhood; secondly, it tends to improve in late childhood; and lastly, and importantly, the education usually involves primarily the parent © 1991Bailli~r¢Tindall
458
Topical Review
who may be more motivated to apply advice to the child than an adult is to apply advice to him or herself. Studies of Asthma Education in Adults
Studies of the effect of educative effort in adults with asthma are relatively few and they are difficult to carry out and interpret. For example, it is not clear whether there is any link between knowledge of asthma and severity of asthma. It might be supposed that those who are ignorant might have more trouble from poorly-managed a s t h m a - but, on the other hand, the more severe asthmatic might be expected to be more knowledgeable because of long and repeated exposure to doctors and medicines (5). If a study shows that an educative intervention has little effect it may be concluded that education is not important in asthma management. The result might, however, have come about through the study being undertaken in clinics or practices where there is above average interest in asthma so that the level of understanding was already high and therefore the educative effort caused little change.
may be scanned by the patient for information he wants, whereas tapes give him what he needs (unsought information). These three studies have different features but they share the important characteristic that the educational intervention comprised information about asthma which was prepared so as to be suitable for patients in general. The information amounted to knowledge rather than specific instructions. The retention of knowedge was in general short-lived. A favourable report of the effect of education in adult asthma on disease severity, work loss etc, is offered by Worth (15). Few details are given but it is notable that the educational input amounted to a week-long course of small group discussions and lectures under inpatient conditions to which was added personal discussion wherever group conclusions did not seem wholely appropriate to an individual. Apart from Worth's rather exceptional educational study, results in adult studies examining the effects of improving knowledge have shown little effect on asthma severity or use of medical services.
E D U C A T I O N AS G E N E R A L K N O W L E D G E A B O U T THE DISORDER A N D ITS TREATMENT
A study by Moldofsky in 1979 (12) examined the effect of a videotape presentation on knowledge of asthma severity. It was found that the presentation caused a significant increase in knowledge compared with a control group when tested soon afterwards but there was virtually no difference after 16 months had elapsed. There was no difference between the groups in terms of asthma severity (judged by activity, time lost from work, number of visits to the doctor and measurement o f pulmonary function). In a careful study in British general practice, Hilton (13) examined the effect of educational intervention at two levels of intensity and compared the results with a control group. The most intensely educated group of asthmatics showed a significant increase in knowledge about asthma after the trial. Neither group showed any change in the ability to make appropriate changes to their own treatment compared with the control group and, furthermore, asthma morbidity in the following year was not different between the groups. Jenkinson (14) compared the effect of a booklet, an audiocassette and both cassette and book with a fourth control group. No measurable effects were noted on the use of drugs or on morbidity from asthma. There was a small increase in knowledge in the educated groups. Knowledge seemed to increase more with the use of the tape but, interestingly, those who had both book and tape preferred the book. This suggests that books
SPECIFIC DIRECTIONS -- S E L F - M A N A G E M E N T P L A N S
The results of the above knowledge-based programmes can be compared with the findings in two studies in which specific directions were given to patients about precisely what action should be taken in certain circumstances. In a study by Beasley et al. (16) patients attending an asthma clinic were managed by establishing a self-management plan in which treatment was varied strictly in accordance with regular peak expiratory flow (PEF) recordings. Enrolled patients were reviewed after a preliminary month during which their usual state was assessed by questionnaire and the results of regular P E F measurements. Their 'potential normal' peak flow was then estimated. Patients were given precise instructions to double the dose of steroid aerosol if the P E F fell to below 70%, to take prednisolone 40 mg daily and contact their doctor if the P E F fell to 50% of their potential normal value and to seek immediate help if it fell to below 150-2001min -I. The full instructions were slightly more elaborate than this but were precise and in written form. The experience of asthma during the 6 months before and the 6 months after the regimen was instituted were compared. There was a highly significant improvement in asthma severity as judged by such measures as number of nights woken, days lost from work, and requirement for oral corticosteroids and a significant increase in baseline pulmonary function.
Topical Review Management plans of a less structured form were used in a study by Modell et al. (17) and benefit was shown in terms of an increase in P E F values and reduction in assessed severity of asthma. The method involved discussing natural history of asthma as well as giving guidance about the appropriate use of medicines between and during attacks. No written material was used and treatment was not linked to peak flow measurement. As in the study by Beasley (16) there was no control group so it is uncertain whether the modest improvement found was necessarily greater than would have been obtained by quite ordinary clinical activity in which there was, for example, merely encouragement to take more prophylactic treatment.
SPECIFIC DIRECTIONS ONLY, INSTEAD OF GENERAL KNOWLEDGE?
There appears to be a clear message emerging that 'specific directions' improve the effectiveness of treatment, whereas 'general knowledge' does not. Nevertheless, a number of points need to be considered before concluding that specific directions are all that is needed. Firstly, it is a regular finding in educational studies that the patients greatly appreciate educational efforts which seem to convey knowledge. Patients pronounce themselves more Confident (although it is not clear whether increase in confidence is necessarily appropriate if ability to manage the illness is not altered). Secondly, some patients harbour fixed ideas which can prevent them from accepting a selfmanagement plan. Three common examples are: 1. It has been shown that inappropriate preoccupation with the possible side effects of oral corticosteroid treatment is a significant factor in the causation of some potentially avoidable deaths from asthma (1). 2. Compliance with recommended treatment in asthma is sometimes impeded by the patient's dissatisfaction with anything short of curative treatment which they imagine must be being denied them. 3. Some patients are convinced that their asthma must necessarily be due to allergy to some undiscovered external agent and consequently do not accept the importance of regular prophylactic treatment to their future well-being. It is arguable whether education in the form of generalized information about asthma treatment (rather than patient-specific information) will necessarily overcome fixed views of this sort, but background information will certainly be required by some patients to modify their concern to an appropriate level. Patients may need specific information to protect them
459
against distracting advice from casual ill-informed sources. Doctor as Educator, or Other Sources of Information?
Overall responsibility for education should reside with the doctor, as the person responsible for the treatment prescribed, but delegation is sensible particularly in straightforward cases. Several studies have shown that positive results can be achieved with nurse educators although it is important that to be effective the nurse should have special training and an interest in asthma. In one study a nurse who was herself an asthmatic was more effective than a non-specialist nurse whether or not she declared that she was asthmatic (18). Where management is non-standard, patient education probably needs to be controlled directly by the doctor. Patients sometimes tend to 'trump' the advice of nurses and other assistants - for example by proclaiming that they are 'allergic' or 'have had a reaction' to a particular treatment and cannot take it. The nurse or assistant may lack the authority to either question the validity of the claimed intolerance or to change the treatment plan promptly. When patients raise problems of this sort it is very often because of some underlying misgiving about the whole concept of the treatment and resolving this will take time. Obviously, all those involved in education of the patients should provide consistent advice. Patient self-management plans which follow a standardized formula like that of Beasley (16) are still relatively untried. Although a uniform approach can be instituted for the purposes of a research project, it is not certain that this will produce adequate control of asthma in the longer term: and if adequate 6ontrol is achieved it is not certain that this will necessarily be achieved with acceptable risk from side effects of medicines used. In most spheres of medicine some individual variation in instruction is required. The striking variation in severity and tractibility of asthma make it likely that individual variation in guidance will continue to be necessary even if the basic theme is a common one. How Much Instruction? How Much Time?
There is an increasingly accepted view that the usual pattern of general practice consultation of 5-10 min is inappropriate for the task of patient education (17). Firstly, instruction tends to be limited to the single step which should be undertaken at that time and there is no opportunity to relate this to management as a whole or to instruct the patient about what to do under
460
Topical Review
other circumstances. Secondly, the interviews are almost always occasioned by breakdown of satisfactory control of asthma and they may therefore be regarded as unwelcome events by doctor and patient alike. I f a patient is given instruction which allows him/her to handle most of the circumstances which are likely to arise due to asthma there is likely to be (i) a reduction in the number of unwelcomed emergency visits and (ii) a sense ofsecurity on the part of the patient who is now in possession of a more compehensive defensive plan. It is now increasingly accepted that patients should be instructed to take oral corticosteroid treatment on their own initiative in the event of worsening asthma. A recurring finding in surveys of death from asthma is the relative lack of corticosteroid treatment in those dying and the fact that relatively few had corticosteroids available to them at the time of death (1,19,20). Comprehensive instruction requires more time than short interviews allow. After the principal educative effort some form of review is required to ensure that asthma is in fact being adequately controlled. These visits will be elective occasions where, amongst other things, the patient's comprehension of the instruction is tested. They are welcomed visits and occasions for reviewing achievement and giving praise. Written Material WRITTEN SPECIFIC INSTRUCTIONS
The need for written material is self-evident since it has been shown that patients recall little, if any, information given to them after a few months have elapsed. Providing written material in this context should not comprise merely issuing a booklet to the patient. Booklets are the classic tool of the 'general information' type; that is, the information is widely applicable to patients in general. Booklets are commonly published by pharmaceutical firms and charities and most are necessarily bland and none can carry specific instruction on changing treatment or how and when to seek help. What is needed is written specific instructions. The patient may not need the instruction on how to change treatment until after many months have elapsed since the main educational effort. PERSONALIZEDWRITTENMATERIAL Instructions which contain information which does not apply to the patient but applies to other patients are likely to be undervalued by patients. There are a number of ways of personalizing written information such as completing a personal treatment card available from the National Asthma Campaign or adding personal instructions to one of a selection ofpre-prepared
cards (21). Another alternative is to prepare instructions in the form of a simple diagram in front of the patient (22) which, although it takes time, has some useful a t t r i b u t e s - t h e amount of information is tailored to patient needs and comprehension, the doctor knows that the information has in fact been read and that the patient has accepted it, the whole of the information has been selected as compatible with the individual concerned and the patient recognizes the instructions as applying uniquely to him/her. Inhaler Technique
Modern treatment of chronic asthma relies heavily on inhaled treatment and a variety of inhalers is now available for both fl2-agonist and prophylactic treatment. A certain degree of technical expertise is required in order to take the treatment efficiently. It is essential to ensure that the patient has the necessary skill to use the inhaler. Responsibility for this is properly that of the prescribing doctor. Time spent on this by the doctor at least once has the effect of underlining the importance, although he/she might with benefit delegate the necessary checking and coaching to others. Assessing the Severity of Asthma - Role of Regular Measurement of Peak Flow in the Home
There is little doubt that patienls and doctors are poor at assessing the severity of asthma. The usual error is to underestimate severity (23). This failure has been pinpointed as another factor operating in cases of avoidable death from asthma (1) and is observable in ordinary clinical practice (17). Objective measurement is the only solution and peak flow measurement is the only practical measure. In a real world, however, it is unlikely that all patients will agree to make P E F measurements several times every day, and in patients with documented mild asthma it is probably unnecessary. Nevertheless, regular P E F measurements should be regarded as essential in any patient who requires frequent changes to treatment or in whom activities are limited or who has features of high risk such as previous (especially recent) hospital admissions. Patients with severe chronic asthma commonly benefit greatly from regular measurements; moreover, intelligent patients can develop sensible refinements to management plans suggested by doctors. Doctors advising patients who are taking high doses of treatment will only be able to advise them properly (about whether they are achieving best possible control, bearing in mind their degree of risk of side effects) if they have some objective information to help them.
Topical R e v i e w
Because not all patients are likely to adopt regular peak flow measurement on a perpetual basis, some doctors use a number of warning signs of increasingly severe asthma as the triggers for specific patient action. The disparity between a patient's assessment of severity of wheezing, tightness or breathlessness on the one hand and severity of airways obstruction on the other means that these indices are worthless as warning signs. Other features of worsening asthma which are not merely expressions of distressed breathing may, however, have some place. Warning signs which are readily recognizable by the patient and reliably associated with poorly controlled asthma include: the onset of nocturnal waking because of asthma, an increase in the time taken for the chest to reach its best performance in the morning, increase in fl2-agonist usage above a specified level and lack of detectable fl.,-agonist effect. Experimental testing of the validity of using these features has not been undertaken. They are likely to be less reliable than peak flow measurement but may be worthy of incorporation into self-management plans because of poor compliance with peak flow measurement particularly in patients whose asthma is usually mild. One difficulty about universal use of either peak flow or symptoms as the trigger for an increase in treatment is the fact that some patients with severe chronic asthma may only be able to reach acceptable levels of PEF or symptom control if they use unacceptably high levels of treatment, in particular high doses of oral corticosteroid. This is one obstacle to the development of universal instructions. Desirable Characteristics of Education for Adults with Asthma
From the evidence present so far and a consideration of the aims it is possible to propose that the education of patients with asthma should have the following characteristics. 1. As far as possible, patients should be trained to manage their own treatment rather than be required to consult the doctor before making changes. 2. Guidance should be primarily in the form of specific instructions which apply to the individual and should not be dominated by general information about the nature of asthma and its treatment which is in a form applicable to all patients. 3. It should include, in at least some patients, instruction on how to start oral corticosteroid treatment in the event of worsening asthma. 4. Guidance should be supported by written instructions. This is because of the short recall of medical
5.
6.
7. 8.
461
information shown by most patients and because instructions about increasing treatment or taking emergency action may not be required until many months after the main educational effort. Guidance should be rendered personal to the patient and not left general. The inclusion of advice which applies to other individuals but not to the patient tends to devalue the whole of the selfmanagement plan. The patient needs a level of knowledge sufficient to prevent fixed ideas from obstructing selfmanagement. Time should be taken to ensure that non-declared worries are evoked and dealt with. Patients should have a balanced view of the side effects of the treatments, The patient's treatment should, in general, be guided by self-measurement of peak flow. Review of the patient's progress should be undertaken electively and not merely left to occasions when poor control demands emergency action. Records of peak flow and of treatment changes should be reviewed by the doctor when the plan of treatment is revised.
References I. British Thoracic Association. Death from asthma in two regions of England. Br M e d J 1982; 285: 1251. 2. Martin AJ, Landau LI, Phelan PD. Asthma from childhood at age 2 I: the patient and his disease. Br Med J 1982; 284: 380. 3. Paterson IC, Crompton GK. Use of pressurized aerosols by asthmatic patients. Br M e d J 1976; l: 76. 4. Avery CH, March J, Brook RH. An assessment of the adequacy of self care by adult asthmatics. J Community Health 1980;5: 167. 5. Hilton S, Sibbald B, Anderson HR, Freeling P. Evaluating health education in asthma- developing the methodology: preliminary communication. J'Roy Soc Med 1982;75: 625. 6. Mazzuca SA. Does patient education in chronic disease have therapeutic value? J Chron Dis 1982; 35: 521. 7. Hilton S. Patient education in asthma. Faro Pract 1986; 3: 44. 8. Clark NM, Feldman CH, Evans D, Levison MJ, Wasilewski Y, Mellins RB. The impact of health education on frequency and cost of health care use by low income children with asthma. J Allergy Clin lmmunol 1986; 78: 108. 9. Lewis CE, Rachelefsky G, Lewis MA, de la Solta A, Kaplan M. A randomized trial of ACT (asthma care training) for kids. Pediatrics 1984;74: 478. 10. Fireman P, Friday GA, Gira C, Vierhaler WA, Michaelis L. Teaching self-management skills to asthmatic children and their parents in an ambulatory care setting. Pediatrics 1981;68:341. 11. Hindi-Alexander, Cropp GJA. Evaluation of a family asthma program. J AIlergy Clin Immuno11984; 74: 505. 12. Moldofsky, H, Broder I, Davies G, LeznoffA. Videotape educational program for people with asthma. Can Med Ass J 1979; 120: 669.
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Topical Review
13. Hilton S, Sibbald B, Anderson HR, Freeling P. Controlled evaluation of the effects of patient education on asthma morbidity in general practice. Lancet 1986; 1: 26. 14. Jenkinson F, Davison J, Jones S, Hawtin P. Comparison of effects of a self management booklet and audiocassette for patients with asthma. Br MedJ 1988; 297: 267. 15. Worth H. Patient Education in asthmatic adults. In: Matthys H, ed., Proceedings of Eighth Congress of SEP. Lung 1990; 168 (Suppl): 463. 16. Beasley R, Cushley M, Holgate ST. A self management plan in the treatment of adult asthma. Thorax 1989; 44: 200. 17. Modell M, Harding JM, Horder EJ, Williams PR. Improving the care of asthmatic patients in general practice. Br MedJ 1983; 286: 2027.
18. Maiman LA, Green LW, Gibson G, MacKenzie EJ. Education for Self-treatment by adult asthmatics. Ann MedAss 1979; 241: 1919. 19. Ormerod LP, Stableforth DE. Asthma mortality in Birmingham 1975-7:53 deaths. Br MedJ 1990; 280: 687. 20. Rea HH, Sears MR, Beaglehole R et aL Lessons from the national asthma mortality study: circumstances surrounding death. N Z Med J 1973; 100:10. 21. Tattersfield AE. Asthma: Management and treatment. In: Brewis RAL, Gibson G J, Geddes DM, eds, Respiratory Medicine. London: Bailliere Tindall, 1990; 644. 22. Brewis RAL. Asthma. In: Wilkes E, ed., Long-term Drug Prescribing. London: Faber and Faber, 1982; 50. 23. Rubinfield AR, Pain MCF. Perception of asthma. Lancet 1976; 2: 822.
Patient education, self-management plans and peak flow measurement R. A. L. BREWIS
Royal Victoria Infirmary, Newcastle upon Tyne NE1 4LP, U.K.
Variation in severity from time to time is a characteristic feature of asthma and most physicians believe that corresponding variation in the level of treatment is appropriate to minimize the risks and unpleasantness of acute and chronic asthma and at the same time minimize the risk of side effects of treatment. Most exacerbations can be ameliorated or aborted if proper changes to treatment are made in good time. It is obviously very restricting for a patient to be required to consult a doctor every time a change in treatment is required. Common experience suggests that patients delay taking action when asthma is worse and, in particular, they put off seeking the help of a doctor. Delay in making appropriate changes to treatment and seeking help has been identified as one factor contributing to apparently avoidable deaths from asthma (1). The range of possible steps taken by doctors in the management of most patients with asthma is fairly limited and the reasoning behind their recommendations is not complex. There is thus no inherent reason why patients should not be trained to take these steps themselves. There is a need for education sufficient to permit the patient to adjust the treatment promptly, appropriately and s a f e l y - t h a t is, to take the steps that would have been taken by the doctor if perpetually present.
Patients' Understanding of Asthma and its Management Most investigations into the level of understanding of patients with asthma about their condition have found a very poor level of knowledge and a low level of essential skills sometimes coupled with inappropriate strategies for coping with worsening symptoms (2-5). Poor understanding is very often combined with a feeling on the part of patients that they have not been told enough about their treatment. 0954-611 I/91/060457+ 06 $03.00/0
Studies of Patient Education It is a feature of patient education programmes in chronic diseases that where the programme aims merely to increase knowledge there is usually no effect on the patient's actions and thus no effect on disease activity or the resulting disability (6). Most 'knowledge' programmes also have the characteristic of being applicable to patients in general rather than specifically adjusted to the requirements of an individual. Knowledge programmes tend to be tested by questionnaire and the common salutory finding is that, although there is usually an improvement in knowledge, this fades quite rapidly over minutes or hours and often disappears completely over months. To be effective, educational activity must cause the patient to take clearly described steps rather than follow certain broad principles. Such programmes have been termed 'behavioural' (6) but will be referred to as 'specific directions" or 'self-management plans' here. The assessment of their effectiveness should centre on assessment of disease severity. Studies of Patient Education in Asthma Most published studies on the effect of education in asthma have been carried out in children or their parents. A wide variety of methods has been employed (7) varying from simple interviews to videotapes and computer games. The extent to which the educational measures alter disease control has varied. In some studies (8), despite considerable effort to improve knowledge (e.g. 6-h long discussion sessions in small groups), there has been no decrease in the use of emergency medical services for asthma and no lessening of disease severity. In other studies (9-11), these indices have shown improvement. The relevance of experience in childhood to education of the adult patient with asthma is uncertain. Firstly, asthma is more responsive to treatment in childhood; secondly, it tends to improve in late childhood; and lastly, and importantly, the education usually involves primarily the parent © 1991Bailli~r¢Tindall
458
Topical Review
who may be more motivated to apply advice to the child than an adult is to apply advice to him or herself. Studies of Asthma Education in Adults
Studies of the effect of educative effort in adults with asthma are relatively few and they are difficult to carry out and interpret. For example, it is not clear whether there is any link between knowledge of asthma and severity of asthma. It might be supposed that those who are ignorant might have more trouble from poorly-managed a s t h m a - but, on the other hand, the more severe asthmatic might be expected to be more knowledgeable because of long and repeated exposure to doctors and medicines (5). If a study shows that an educative intervention has little effect it may be concluded that education is not important in asthma management. The result might, however, have come about through the study being undertaken in clinics or practices where there is above average interest in asthma so that the level of understanding was already high and therefore the educative effort caused little change.
may be scanned by the patient for information he wants, whereas tapes give him what he needs (unsought information). These three studies have different features but they share the important characteristic that the educational intervention comprised information about asthma which was prepared so as to be suitable for patients in general. The information amounted to knowledge rather than specific instructions. The retention of knowedge was in general short-lived. A favourable report of the effect of education in adult asthma on disease severity, work loss etc, is offered by Worth (15). Few details are given but it is notable that the educational input amounted to a week-long course of small group discussions and lectures under inpatient conditions to which was added personal discussion wherever group conclusions did not seem wholely appropriate to an individual. Apart from Worth's rather exceptional educational study, results in adult studies examining the effects of improving knowledge have shown little effect on asthma severity or use of medical services.
E D U C A T I O N AS G E N E R A L K N O W L E D G E A B O U T THE DISORDER A N D ITS TREATMENT
A study by Moldofsky in 1979 (12) examined the effect of a videotape presentation on knowledge of asthma severity. It was found that the presentation caused a significant increase in knowledge compared with a control group when tested soon afterwards but there was virtually no difference after 16 months had elapsed. There was no difference between the groups in terms of asthma severity (judged by activity, time lost from work, number of visits to the doctor and measurement o f pulmonary function). In a careful study in British general practice, Hilton (13) examined the effect of educational intervention at two levels of intensity and compared the results with a control group. The most intensely educated group of asthmatics showed a significant increase in knowledge about asthma after the trial. Neither group showed any change in the ability to make appropriate changes to their own treatment compared with the control group and, furthermore, asthma morbidity in the following year was not different between the groups. Jenkinson (14) compared the effect of a booklet, an audiocassette and both cassette and book with a fourth control group. No measurable effects were noted on the use of drugs or on morbidity from asthma. There was a small increase in knowledge in the educated groups. Knowledge seemed to increase more with the use of the tape but, interestingly, those who had both book and tape preferred the book. This suggests that books
SPECIFIC DIRECTIONS -- S E L F - M A N A G E M E N T P L A N S
The results of the above knowledge-based programmes can be compared with the findings in two studies in which specific directions were given to patients about precisely what action should be taken in certain circumstances. In a study by Beasley et al. (16) patients attending an asthma clinic were managed by establishing a self-management plan in which treatment was varied strictly in accordance with regular peak expiratory flow (PEF) recordings. Enrolled patients were reviewed after a preliminary month during which their usual state was assessed by questionnaire and the results of regular P E F measurements. Their 'potential normal' peak flow was then estimated. Patients were given precise instructions to double the dose of steroid aerosol if the P E F fell to below 70%, to take prednisolone 40 mg daily and contact their doctor if the P E F fell to 50% of their potential normal value and to seek immediate help if it fell to below 150-2001min -I. The full instructions were slightly more elaborate than this but were precise and in written form. The experience of asthma during the 6 months before and the 6 months after the regimen was instituted were compared. There was a highly significant improvement in asthma severity as judged by such measures as number of nights woken, days lost from work, and requirement for oral corticosteroids and a significant increase in baseline pulmonary function.
Topical Review Management plans of a less structured form were used in a study by Modell et al. (17) and benefit was shown in terms of an increase in P E F values and reduction in assessed severity of asthma. The method involved discussing natural history of asthma as well as giving guidance about the appropriate use of medicines between and during attacks. No written material was used and treatment was not linked to peak flow measurement. As in the study by Beasley (16) there was no control group so it is uncertain whether the modest improvement found was necessarily greater than would have been obtained by quite ordinary clinical activity in which there was, for example, merely encouragement to take more prophylactic treatment.
SPECIFIC DIRECTIONS ONLY, INSTEAD OF GENERAL KNOWLEDGE?
There appears to be a clear message emerging that 'specific directions' improve the effectiveness of treatment, whereas 'general knowledge' does not. Nevertheless, a number of points need to be considered before concluding that specific directions are all that is needed. Firstly, it is a regular finding in educational studies that the patients greatly appreciate educational efforts which seem to convey knowledge. Patients pronounce themselves more Confident (although it is not clear whether increase in confidence is necessarily appropriate if ability to manage the illness is not altered). Secondly, some patients harbour fixed ideas which can prevent them from accepting a selfmanagement plan. Three common examples are: 1. It has been shown that inappropriate preoccupation with the possible side effects of oral corticosteroid treatment is a significant factor in the causation of some potentially avoidable deaths from asthma (1). 2. Compliance with recommended treatment in asthma is sometimes impeded by the patient's dissatisfaction with anything short of curative treatment which they imagine must be being denied them. 3. Some patients are convinced that their asthma must necessarily be due to allergy to some undiscovered external agent and consequently do not accept the importance of regular prophylactic treatment to their future well-being. It is arguable whether education in the form of generalized information about asthma treatment (rather than patient-specific information) will necessarily overcome fixed views of this sort, but background information will certainly be required by some patients to modify their concern to an appropriate level. Patients may need specific information to protect them
459
against distracting advice from casual ill-informed sources. Doctor as Educator, or Other Sources of Information?
Overall responsibility for education should reside with the doctor, as the person responsible for the treatment prescribed, but delegation is sensible particularly in straightforward cases. Several studies have shown that positive results can be achieved with nurse educators although it is important that to be effective the nurse should have special training and an interest in asthma. In one study a nurse who was herself an asthmatic was more effective than a non-specialist nurse whether or not she declared that she was asthmatic (18). Where management is non-standard, patient education probably needs to be controlled directly by the doctor. Patients sometimes tend to 'trump' the advice of nurses and other assistants - for example by proclaiming that they are 'allergic' or 'have had a reaction' to a particular treatment and cannot take it. The nurse or assistant may lack the authority to either question the validity of the claimed intolerance or to change the treatment plan promptly. When patients raise problems of this sort it is very often because of some underlying misgiving about the whole concept of the treatment and resolving this will take time. Obviously, all those involved in education of the patients should provide consistent advice. Patient self-management plans which follow a standardized formula like that of Beasley (16) are still relatively untried. Although a uniform approach can be instituted for the purposes of a research project, it is not certain that this will produce adequate control of asthma in the longer term: and if adequate 6ontrol is achieved it is not certain that this will necessarily be achieved with acceptable risk from side effects of medicines used. In most spheres of medicine some individual variation in instruction is required. The striking variation in severity and tractibility of asthma make it likely that individual variation in guidance will continue to be necessary even if the basic theme is a common one. How Much Instruction? How Much Time?
There is an increasingly accepted view that the usual pattern of general practice consultation of 5-10 min is inappropriate for the task of patient education (17). Firstly, instruction tends to be limited to the single step which should be undertaken at that time and there is no opportunity to relate this to management as a whole or to instruct the patient about what to do under
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Topical Review
other circumstances. Secondly, the interviews are almost always occasioned by breakdown of satisfactory control of asthma and they may therefore be regarded as unwelcome events by doctor and patient alike. I f a patient is given instruction which allows him/her to handle most of the circumstances which are likely to arise due to asthma there is likely to be (i) a reduction in the number of unwelcomed emergency visits and (ii) a sense ofsecurity on the part of the patient who is now in possession of a more compehensive defensive plan. It is now increasingly accepted that patients should be instructed to take oral corticosteroid treatment on their own initiative in the event of worsening asthma. A recurring finding in surveys of death from asthma is the relative lack of corticosteroid treatment in those dying and the fact that relatively few had corticosteroids available to them at the time of death (1,19,20). Comprehensive instruction requires more time than short interviews allow. After the principal educative effort some form of review is required to ensure that asthma is in fact being adequately controlled. These visits will be elective occasions where, amongst other things, the patient's comprehension of the instruction is tested. They are welcomed visits and occasions for reviewing achievement and giving praise. Written Material WRITTEN SPECIFIC INSTRUCTIONS
The need for written material is self-evident since it has been shown that patients recall little, if any, information given to them after a few months have elapsed. Providing written material in this context should not comprise merely issuing a booklet to the patient. Booklets are the classic tool of the 'general information' type; that is, the information is widely applicable to patients in general. Booklets are commonly published by pharmaceutical firms and charities and most are necessarily bland and none can carry specific instruction on changing treatment or how and when to seek help. What is needed is written specific instructions. The patient may not need the instruction on how to change treatment until after many months have elapsed since the main educational effort. PERSONALIZEDWRITTENMATERIAL Instructions which contain information which does not apply to the patient but applies to other patients are likely to be undervalued by patients. There are a number of ways of personalizing written information such as completing a personal treatment card available from the National Asthma Campaign or adding personal instructions to one of a selection ofpre-prepared
cards (21). Another alternative is to prepare instructions in the form of a simple diagram in front of the patient (22) which, although it takes time, has some useful a t t r i b u t e s - t h e amount of information is tailored to patient needs and comprehension, the doctor knows that the information has in fact been read and that the patient has accepted it, the whole of the information has been selected as compatible with the individual concerned and the patient recognizes the instructions as applying uniquely to him/her. Inhaler Technique
Modern treatment of chronic asthma relies heavily on inhaled treatment and a variety of inhalers is now available for both fl2-agonist and prophylactic treatment. A certain degree of technical expertise is required in order to take the treatment efficiently. It is essential to ensure that the patient has the necessary skill to use the inhaler. Responsibility for this is properly that of the prescribing doctor. Time spent on this by the doctor at least once has the effect of underlining the importance, although he/she might with benefit delegate the necessary checking and coaching to others. Assessing the Severity of Asthma - Role of Regular Measurement of Peak Flow in the Home
There is little doubt that patienls and doctors are poor at assessing the severity of asthma. The usual error is to underestimate severity (23). This failure has been pinpointed as another factor operating in cases of avoidable death from asthma (1) and is observable in ordinary clinical practice (17). Objective measurement is the only solution and peak flow measurement is the only practical measure. In a real world, however, it is unlikely that all patients will agree to make P E F measurements several times every day, and in patients with documented mild asthma it is probably unnecessary. Nevertheless, regular P E F measurements should be regarded as essential in any patient who requires frequent changes to treatment or in whom activities are limited or who has features of high risk such as previous (especially recent) hospital admissions. Patients with severe chronic asthma commonly benefit greatly from regular measurements; moreover, intelligent patients can develop sensible refinements to management plans suggested by doctors. Doctors advising patients who are taking high doses of treatment will only be able to advise them properly (about whether they are achieving best possible control, bearing in mind their degree of risk of side effects) if they have some objective information to help them.
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Because not all patients are likely to adopt regular peak flow measurement on a perpetual basis, some doctors use a number of warning signs of increasingly severe asthma as the triggers for specific patient action. The disparity between a patient's assessment of severity of wheezing, tightness or breathlessness on the one hand and severity of airways obstruction on the other means that these indices are worthless as warning signs. Other features of worsening asthma which are not merely expressions of distressed breathing may, however, have some place. Warning signs which are readily recognizable by the patient and reliably associated with poorly controlled asthma include: the onset of nocturnal waking because of asthma, an increase in the time taken for the chest to reach its best performance in the morning, increase in fl2-agonist usage above a specified level and lack of detectable fl.,-agonist effect. Experimental testing of the validity of using these features has not been undertaken. They are likely to be less reliable than peak flow measurement but may be worthy of incorporation into self-management plans because of poor compliance with peak flow measurement particularly in patients whose asthma is usually mild. One difficulty about universal use of either peak flow or symptoms as the trigger for an increase in treatment is the fact that some patients with severe chronic asthma may only be able to reach acceptable levels of PEF or symptom control if they use unacceptably high levels of treatment, in particular high doses of oral corticosteroid. This is one obstacle to the development of universal instructions. Desirable Characteristics of Education for Adults with Asthma
From the evidence present so far and a consideration of the aims it is possible to propose that the education of patients with asthma should have the following characteristics. 1. As far as possible, patients should be trained to manage their own treatment rather than be required to consult the doctor before making changes. 2. Guidance should be primarily in the form of specific instructions which apply to the individual and should not be dominated by general information about the nature of asthma and its treatment which is in a form applicable to all patients. 3. It should include, in at least some patients, instruction on how to start oral corticosteroid treatment in the event of worsening asthma. 4. Guidance should be supported by written instructions. This is because of the short recall of medical
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information shown by most patients and because instructions about increasing treatment or taking emergency action may not be required until many months after the main educational effort. Guidance should be rendered personal to the patient and not left general. The inclusion of advice which applies to other individuals but not to the patient tends to devalue the whole of the selfmanagement plan. The patient needs a level of knowledge sufficient to prevent fixed ideas from obstructing selfmanagement. Time should be taken to ensure that non-declared worries are evoked and dealt with. Patients should have a balanced view of the side effects of the treatments, The patient's treatment should, in general, be guided by self-measurement of peak flow. Review of the patient's progress should be undertaken electively and not merely left to occasions when poor control demands emergency action. Records of peak flow and of treatment changes should be reviewed by the doctor when the plan of treatment is revised.
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13. Hilton S, Sibbald B, Anderson HR, Freeling P. Controlled evaluation of the effects of patient education on asthma morbidity in general practice. Lancet 1986; 1: 26. 14. Jenkinson F, Davison J, Jones S, Hawtin P. Comparison of effects of a self management booklet and audiocassette for patients with asthma. Br MedJ 1988; 297: 267. 15. Worth H. Patient Education in asthmatic adults. In: Matthys H, ed., Proceedings of Eighth Congress of SEP. Lung 1990; 168 (Suppl): 463. 16. Beasley R, Cushley M, Holgate ST. A self management plan in the treatment of adult asthma. Thorax 1989; 44: 200. 17. Modell M, Harding JM, Horder EJ, Williams PR. Improving the care of asthmatic patients in general practice. Br MedJ 1983; 286: 2027.
18. Maiman LA, Green LW, Gibson G, MacKenzie EJ. Education for Self-treatment by adult asthmatics. Ann MedAss 1979; 241: 1919. 19. Ormerod LP, Stableforth DE. Asthma mortality in Birmingham 1975-7:53 deaths. Br MedJ 1990; 280: 687. 20. Rea HH, Sears MR, Beaglehole R et aL Lessons from the national asthma mortality study: circumstances surrounding death. N Z Med J 1973; 100:10. 21. Tattersfield AE. Asthma: Management and treatment. In: Brewis RAL, Gibson G J, Geddes DM, eds, Respiratory Medicine. London: Bailliere Tindall, 1990; 644. 22. Brewis RAL. Asthma. In: Wilkes E, ed., Long-term Drug Prescribing. London: Faber and Faber, 1982; 50. 23. Rubinfield AR, Pain MCF. Perception of asthma. Lancet 1976; 2: 822.