Removing barriers to effective self-management of asthma

Patient Education and Counseling, 14t19891217 - 226 Elsevier Scientific Publishers Ireland Ltd.

Removing Barriers Self-Management Adrian

to Effective of Asthma

E. Bauman”, Ashley R. Craigb, Julie Dunsmorec, Brownec, David H. Allend and Russell Vandenbergd

Gillian

“Department of Public Health, Building AW, University of Sydney, Sydney 2006, ?%hool of Nursing, University of Technology, Sydney,
(Received February 17th. 1989) (Accepted July 7th, 19891

The effectiveness of an asthma self-management program was investigated in a community sample of adults with chronic asthma. The program emphasis was in reducing possible barriers to effective self management. These barriers included lack of asthma knowledge and awareness, poor perceptions of preventive behaviors, negative moods and beliefs, and poor personal sense of control. The extent and stability of change shown by the immediate and long-term follow-ups was impressive for both knowledge of asthma and asthma self management and monitoring behaviors. Implications of these changes are discussed in terms of quality of life and reduced asthma morbidity and mortality. Further research should employ a no-treatment control group which is matched as closely as possible to the intervention group in order to investigate the influence of time. Key words: asthma; self-management;

patient education; barriers.

Introduction

Asthma has become a major health problem in Australia, with a doubling of the mortality rate over the past decade [l]. At least two-thirds of asthma deaths and a large percentage of hospitalizations are associated with preventable factors [2 - 31. Many people with asthma are unable to estimate its severity and to appropriately manage severe attacks. Thus asthma can become a chronic and disabling health problem [4]. Appropriate education and skills training are important approaches to reducing the problems arising from asthma. Self-management behaviors are essential if people with asthma are to identify and manage asthma attacks. For instance, the development of effective asthma self-management (ASM) is an essential step in the reduction of asthma morbidity [5]. In such programs perCorrespondence

to: A. Bauman.

0738-3991/89/$03.50 0 1989 Elsevier Scientific Publishers Published and Printed in Ireland

Ireland Ltd.

217

sons with asthma should be taught how to cope and deal with their asthma by developing skills and changing attitudes which will help reduce morbidity. Behaviorally based self-management programs for children with asthma have been developed and evaluated [6- 81. These programs seem to have helped children cope better with asthma, improved asthma knowledge and medication compliance, changed inappropriate beliefs, led to a reduction in emergency room visits and reduced school absences. The development of structured adult programs has been much slower, with only a small number reported in the literature [g-lo]. The program developed at the Royal North Shore Hospital (RNSH) in Sydney is one of the first adult ASM programs to be evaluated. The present paper demonstrates initial outcome data from this program. Bartlett [ll] stresses the important role that education programs have in reducing the barriers to effective self-change. The present authors believed this an important approach, therefore emphasis in the program focused upon reducing possible barriers to effective self-management of asthma. These include knowledge of asthma, perceptions of preventive behavior, improved communication between the health practitioner and patient, and the patients’ general state of mind, feelings and expectations of personal control and social interaction. The extent of change as a result of the program will be reported for each of the above areas. Method and intervention Subjects attended the Royal North Shore Asthma Education Program [12]. The program was conducted once a week over a 4-week period and each session lasted 2.5 h. Programs were conducted in groups of around 12 patients with additional support and family members. The intervention consisted of an ASM program comprised of educational and behavioral components, including medical aspects, peak flow self-monitoring, and coping skills development (illustrated in Table I). The program was run by two experienced patient educators who adhered to the structure of the program which has now been published as a patient manual [12]. Educational strategies used in this adult program were somewhat different from those reported in pediatric programs [4-61. Adult education techniques, often derived from a social learning perspective, included interactive small group work, decision making, behavior rehearsal and modeling, and overcoming denial of a severe attack (Table Il. The process of adult skills development particularly benefited from these strategies. Participants All enrolled subjects (n = 1181 were referred to the program over a l-year period from either a major teaching hospital, physicians’ private rooms, their family doctor or by self-referral from the general community. All subjects were persons with asthma as indicated by lung function at the initial visit. The baseline mean morning pre-bronchodilator peak expiratory flow rate (PEFR) was

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TABLE I CONTENT OF THE ASTHMA EDUCATION PROGRAM Content

Educational methods

WEEK 1 General asthma questions and participants’ asthma histories

Small group discussion Individual responses

Peak flow monitoring, diaries

Individual instruction, observation and practice

Identifying problems, and goal setting

Group discussion, Individual goal setting Homework exercises

WEEK 2 Communication

Small group work

Feelings about asthma

Discussion

Barriers to acceptance

Identify barriers, practice assertiveness messages and situation specific relaxation

Assertiveness training Medication (11

Lecture; placebo demonstration

WEEK 3 Medication (111 Judgement

of severity

Diary recording Crisis planning (I): Reasons for delay in severe attacks WEEK 4 Lifestyle and asthma

Lecture/discussion Review self-monitored diaries Group discussions and comparison Small group : problem solving

Lecture, discussion Individual goal setting

Decision making

Review of goals and homework

Crisis planning (II)

Problem solving Situation rehearsals,

discussion

314.7 l/min (S.D. = 94.8). This was below 70% of the resting PEFR for twothirds of the subjects as predicted by the algorithm of Leiner [13]. The mean morning variability in lung function was 20.2% (pre-minus post-medication PEFR divided by post-medication PEFR), a further indication of asthma. All subjects were on daily inhaled bronchodilator medication, with half on additional asthma medications (inhaled steroids or oral theophylline medica-

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tionl. Furthermore, 24 subjects (200/b) were regularly on oral steroids, indicative of more severe asthma. Virtually all subjects were nonsmokers. Subjects over the age of 65 were excluded from the study to minimize problems of mis-diagnosis associated with the elderly. For those entering the program, 32O/ohad completed university and 91% had completed 4-6 years of higher school education. Seventy-two percent were female, the group had a mean age of 42 (range 15-651,75O/b had visited a specialist physician for their asthma in the 12 months prior to the program and 41.5O/6had been to a hospital or emergency room for their asthma in the 12 months previous to the program. Eighteen percent reported their asthma to be mild, 62% reported it to be moderately severe and 200/6reported their asthma to be severe. Measurement Before subjects entered the program, a number of variables were assessed via a pre-intervention questionnaire. Similar questionnaires were completed by subjects 3 weeks following the four session intervention and 12 months following the intervention. The measures included demographic variables, history of asthma, perceptions of preventive behavior, perceptions of control, mood and compliance factors. Test-retest reliability of the questionnaire was assessed on an independent sample of 37 subjects enrolled in the asthma program, but outside the time frame of this evaluation. A shortened questionnaire was used with repeat measurement 2 weeks apart [14]. Spearman’s rank order correlation coefficients were used for repeat measures of these ordinal data, and varied from 0.6 for the personal control questions (Table 1111to 0.84 for the preventive behavior questions (Table 111.Content and face validity of the questionnaire was developed following 61 feedback from an earlier pilot study of asthma patients in 1984, and (ii) discussion of the questions with experts, both from respiratory medicine and patient education. Design The design employed in the study was quasi-experimental that is, a one group pre-test, post-test and long-term follow-up design. The present study was of a pilot nature, aiming to isolate variables that may indicate successful outcome which could then be experimentally researched. The design assumes that asthma is a chronic condition and that attitudes and behaviors related to such a chronic disability are relatively stable. Any change in expectations and attitudes following soon after the intervention would be assumed to be a result of the intervention itself. The test-retest reliability data referred to above also indicate that no significant change in responses occurred as a result of exposure to the questionnaire alone. The 12 month follow-up was included to assess the stability of any change occurring after the program. Changes in self-reported monitoring and mean PEFR rates were analyzed by univariate t-tests and chisquared analyses. In order to determine whether any psychological changes were significant, univariate repeated measures analysis of variance (ANOVA)

220

were conducted obtained.

and post-hoc contrasts

calculated

if significant

F-ratios

were

Results

Altogether, 118 persons with asthma completed the program and pre-treatment questionnaire. Attempts were made to follow-up all subjects by repeat contacts via telephone and mailout. Eighty subjects (68%~)completed the postprogram assessment and 78 subjects (66%) completed the 12 month follow-up. However, only 67 subjects completed all three questionnaires (pre-, post- and long-term) and of these 63 provided complete data. Those who were not contactable at 12 months follow-up were not different on baseline asthma knowledge and attitudes compared to those who completed the follow-up measure. Asthma related behavior and knowledge

Self-reported routine use of a peak flow meter to monitor asthma increased from 18% before treatment to around 85% post-program and 89% in the longterm (x2 = 19.5, df = 2, P < 0.001). Figure 1 shows the response to the openended question asking participants how they would distinguish mild from a severe asthma attack. The proportion responding inappropriately (for example, “just know when asthma is severe”) decreased from 24% pre-program to 2% at

Participants’ self-assessment #

PRE

PROGRAM

0

of asthma severity

12 MONTHS

FOLl.OW

UP

50

‘ercent

of responders

40

30

Inappropriate

Increasing Symptoms

No response to medication

Peak Flow measured

Fig. 1. Showing the responses of the subjects to the question “How would you tell the difference between a mild and a severe attack of asthma”.

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12 month follow-up. The proportion who believed peak flow meters were important increased from 11% to almost half the subjects at 12 months. Peak flow measurements were measured by the subjects twice daily before and after inhaled medication. The mean morning pre-bronchodilator PEFR significantly improved from 310 l/min (S.D. = 1011 pre-program to 321 Urnin (S.D. = 117) post-program (t = - 2.8, df = 62,P < 0.01). The mean morning variability in lung function declined from 20% to 17% (P = 0.091. The questionnaire assessed knowledge of the actions of common asthma medications. These included inhaled steroids and inhaled and oral bronchodilators. The overall proportion of correct responses increased following the program (a mean of 45% responses correct pre-program compared to a mean of 76% correct responses 12 months later, z score test = 8.3, P < 0.001). The results of the repeat measures analysis of variance are given below. Post-hoc comparisons were only applied if the repeated measures ANOVA were significant. As a number of contrasts were calculated, the significance criterion to reject the null hypothesis of no difference was kept at the 0.01 level. Table II shows mean changes in knowledge of physiology during an asthma attack (based upon agreement with statements such as “During an asthma attack, the breathing tubes close down or contract”). Exposure to the program increased such knowledge (F = 32.5, df = 1,61, P < 0.011 and this gain was TABLE II SHOWING MEAN KNOWLEDGE AND MEAN PERCEPTIONS OF PREVENTIVE BEHAVIOR CHANGES AS RESULT OF TREATMENT Measure

Pre

Post

Longterm

df

F ratio

1. Knowledge of physiology during asthma attack (4 questions)

3.0 (0.7)

3.6 (0.7)

3.5 (6)

2,122

19.9**

Perceptions of preventive behaviour: 4 point scale from never (1) to always (4) 2.2 (1) 1.5 (0.9) 2,122 2. I should take 1.8 (1) preventive action before exercise 3. I carry emergency asthma ID

0.6 (1.2)

1.4 (1.3)

5 Point scale from very difficult (1) to very easy (5) 4. Use my puffers 3.7 (1.3) 4.1(l) in public 5. Regularly take 4.0 (1.2) 4.3 (1) my medication

1.6 (1.4)

2,124

17.2**

4.3 (0.9)

2,126

10.5**

4.5 (0.8)

2,124

6.6*

*P < 0.01; **P < 0.001. Note, standard deviations are shown in parentheses.

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6.9*

maintained in the long-term, shown by a lack of difference between the postand long-term means (F = 0.02, df = 1,61, NS). Table II shows the changes in perceptions of preventive behavior as a result of the program. Exposure to the program increased the belief that preventive action should occur before exercise (F = 7.8, df = 1,61, P < 0.011,but this was not maintained at 12 months as the pre- and long-term means were not significantly different (F = 2.2, df = 1,61, NS). Exposure to the program increased the belief that participants should carry identification in case of a crisis (F = 26, df = 1,62,P < 0.011,decreased perceptions of difficulty about using inhalers in public @’ = 12.2, df = 1,63, P < 0.011,and increased compliance in taking medication @ = 8.4, df = 62, P < 0.011;these changes were all maintained at 12 months. Attitude change Table III shows mean attitude change as a result of the program. Exposure to the program seemed to reduce some of the psychological morbidity associated with asthma. For instance, feelings of anger (F = 22.1, df = 1,60, P < 0.011 and irritation (F = 27, df = 1,63, P < 0.01) were reduced and these

TABLE III SHOWING MEAN ATTITUDE Measure

Attitudes

CHANGE AS A RESULT OF TREATMENT

Pre

towards

1. I often feel angry about my asthma 2. I get irritated by my asthma

Post

Longterm

df

Fratio

self and others: 4 point scale from does not apply (0) to very much applies (3) 1.5 (1.2)

0.9 (1)

0.8 (0.9)

2,120

15.5**

2.0 (0.9)

1.5 (1.0)

1.2 (1.0)

2,126

16.9+*

3. Asthma effects my moods and feelings

1.8 (1.0)

1.5 (0.9)

1.3 (0.9)

2,126

6.2*

4. Asthma affects my social activity 5. Asthma affects my close

1.5 (1.0)

1.2 (1.0)

0.9 (0.9)

2,126

12.3**

1.10.0)

0.7 (1.0)

0.5 (0.8)

2,124

11.9**

relationships Personal control: 5 point scale (high scores suggest low preceptions of personal control) 6. Good health is 1.9 (0.8) 1.5 (0.6) 1.5 (0.6) 2,124 12.6** due to luck anddependency upon others 7. I am responsible *P < 0.01;

1.6 (1.0)

1.3 (0.7)

1.3 (0.7)

2,124

NS

**P< 0.001 Note, standard deviations are shown in parentheses.

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gains were maintained in the long-term shown by lack of differences between the post- and long-term means (F = 0.8, df = 1,60, NS and F = 5.7, df = 1,63, NS, respectively). Attitudes towards social interaction (F = 13.7, df = 1,63, P < 0.01) and close others (F = 15.2, df = 1,62, P < 0.011 were also enhanced and these gains were also maintained or improved 12 months later @’= 9.6, df = 1,63, P < 0.01 and F = 5.8, df = 1,62, NS, respectively). Perceptions of personal control were internalized as a result of the program (F = 12.6, df = 1,62, P < 0.01). This suggests that the subjects believed the asthma to be more under their own control. This gain was maintained 12 months later. However, perceptions of self-responsibility were not enhanced. Discussion

The barriers which hinder adult asthma self-management include insufficient knowledge and inappropriate beliefs about asthma. The results of this program suggest that it was effective in reducing some of these barriers, and facilitating appropriate health behaviors. For instance, their knowledge of asthma medications increased and their knowledge of the physiological mechanisms of asthma attacks significantly improved. Furthermore, their knowledge of how to distinguish between a mild and severe asthma attack also improved, even at the 12 month follow-up. It is important that a person’s understanding and knowledge of a problem be increased if self-intervention is to occur and be maintained. The above increases in knowledge are likely to enhance the subjects’ long-term prospects of managing their asthma. Actual behavior change is necessary for a reduction in barriers to self-management of asthma. Self-reported behaviors related to asthma management were measured and shown to improve. For instance, the reported use by the subjects of a peak flow meter to monitor asthma increased from only 1 in 10 before the program to almost 9 in 10 after the program. The self-monitored lung function data suggests a modest improvement in mean morning lung function, and a reduction in lung function variability. Although the reduction in variability was not quite significant, the trend provided encouraging preliminary evidence of better asthma control. As a result of the program most believed they should carry identification in case of a crisis, improvement occurred in their self-reported compliance in taking appropriate medication, and for most the perceived difficulties of using an inhaler in public significantly reduced. However, one barrier to change that was reduced by the program, had increased to pre-program levels 12 months later. This was the belief that they should take preventive medications before active exercise. Why this important belief was not maintained cannot be answered, but may point to areas in the program that may need strengthening or reinforcement. Other possible explanations include the possibility that subjects did not think them important, or could have resulted from measurement error in the form of ambiguity in the question. Maintenance of positive behavior change has been shown to be partly determined by perceptions of personal control [15 - 191. It is therefore important for

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persons attempting to manage asthma to not only become more aware and to change their behavior, but also that they perceive their positive changes to be the result of their own efforts and ability. Perceptions of personal control were enhanced and maintained as a result of the program. Subjects internalized their beliefs, meaning they believed they had more control over their asthma and their behavior. These changes in attitude may facilitate the long-term possibility of asthma control. Mood has also been shown to be an important determinant of successful self-management [20]. Thus it is important that the subjects reduce negative moods that may become barriers to the management of asthma. Feelings of anger and irritation were reduced and maintained, suggesting they were less affected by negative emotions caused by their asthma. Again this change must only enhance their ability to continue to reduce barriers to effective self-management. The program also significantly reduced negative attitudes towards the patient’s family and improved family and social interactions. The above reductions in barriers and increase in asthma self-management practices are viewed as an effective short-term outcome for the participants in the program. It is also probable that long-term maintenance of these health behaviors will be associated with a reduction in asthma related disability. Methodological issues in the present study include the uncontrolled design, as well as the self-selection of subjects to the program, resulting in more women with a higher median educational level than the general Australian population. The modest response rate of questionnaires and self-monitored lung function data probably reflected geographic mobility rather than noncompliance, as almost all of those whom we contacted did return a questionnaire. This study also reflects the need for controlled studies investigating similar outcomes following an adult asthma education program. Such studies would also need to utilize additional objective behavioral or physiological outcome measures to complement the psychological and self-report measures used in this research. Finally, asthma education programs need to be developed which access the hidden asthmatics in the community, who would not typically volunteer for small group behavioral programs. However, as a preliminary observation, it was pleasing to find that the adults with asthma who had entered and successfully completed the program had reduced barriers that might have restricted their health potential, and that they had adopted and maintained healthy behaviors which should reduce their chances of asthma mortality and morbidity. Acknowledgments The help of the Royal North Shore Hospital, Department of Patient Education and Health Promotion and the Department of Thoracic Medicine is gratefully acknowledged. Part of this project was supported by a Department of Health Hospital Health Promotion Grant.

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