Delivering asthma education to special high risk groups

Patient Education and Counseling 32 (1997) S77–S86

Delivering asthma education to special high risk groups J. Mark FitzGerald*, Mark O. Turner Respiratory Division, Department of Medicine, University of British Columbia, Vancouver, Canada V5 Z3 J5

Abstract Patients at high risk from their asthma and therefore worthy of more focused asthma education are those at risk of fatal and near fatal asthma(NFA). In recent years the characteristics of these patients have been better defined. The most important risk factor appears to be a prior history of NFA. Other important features include prior emergency room visits or hospitalization for asthma. Excess use of beta-agonists, especially in the absence of inhaled corticosteroids, also confers increased risk. High risk groups also share similar psychosocial barriers as well as economic deprivation. The benefits of asthma education in these groups have been assessed in a number of studies. In general, asthma education has been shown to have an impact on these patients. Greater effects have been achieved where there has been consistent follow-up by the same physician. Patients require frequent reinforcement of their asthma management, especially regarding their response to acute exacerbations. A sub-group of patients with more severe asthma appear to have a problem perceiving dyspnoea and may therefore benefit from peak flow monitoring but the problem of compliance with this intervention is significant. Behaviour modification plays an important role as does ensuring the patient has adequate resources to purchase medications especially the more expensive anti-inflammatory therapy. Future studies should focus on optimizing the potential benefits of educating high risk patients as they are not only those at greatest risk of death but also consume a disproportionate amount of health care resources. u 1997 Elsevier Science Ireland Ltd. Keywords: Asthma education; High risk patients; Barriers

1. Introduction In recent years there has been concern regarding rising rates of asthma [1] and in addition asthma mortality [2] and near fatal asthma(NFA) [3]. Although rates of asthma mortality are declining in many Western countries [4,5] much still needs to be done. Along with the changing *Corresponding author. Tel.: 1 1 604 8754122; fax: 1 1 604 8754695; e-mail: [email protected]

epidemiology of asthma the role of inflammation in the pathogenesis of asthma has been recognized and has focused our attention on the therapeutic importance of anti-inflammatory therapy [6]. Recent evidence based asthma guidelines have highlighted the importance of such therapy [7]. A better awareness of the chronic nature of asthma has also led to greater emphasis on the role of asthma education in its management [8]. In this article we will outline the characteristics

0738-3991 / 97 / $17.00 u 1997 Elsevier Science Ireland Ltd. All rights reserved. PII S0738-3991( 97 )00099-2

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of those at increased risk from their asthma i.e. those who have risk factors for NFA and fatal asthma; outline the barriers to the delivery of asthma education to such groups and finally review studies that have targeted these groups. We outlined future research needs in this area.

2. High risk groups Characteristics of patients at high risk of asthma morbidity and mortality are outlined in Table 1. The single greatest risk factor for NFA is a prior history of intubation [9]. In a prospective study we have shown that patients with such a history have a twenty seven times higher risk of NFA than hospitalized controls [9]. Similarly a prior history of hospitalization or visit to the emergency room in the prior twelve months has been associated with an increased risk of fatal asthma [10]. In a series of epidemiological studies the increased risk of NFA and asthma mortality associated with excess intake of betaagonists has been shown [11]. Suissa and coworkers, in particular, demonstrated the increased risk associated with the rapid increase in the number of canisters of such agents used [12]. Our prospective study did not show similar results but may have been limited by the relatively small number of episodes of NFA studied [9]. A recent study from New Zealand also indicated the potential for the severity of asthma to confound studies evaluating the role of betaagonists in NFA and fatal asthma [13]. We did Table 1 Characteristics of patients at increased risk from their asthma 1. Prior history of intubation for acute asthma. 2. Hospitalization or emergency department visit in the past year. 3. Excessive and increasing use of short-acting beta-agonists. 4. Underutilisation of inhaled corticosteroids. 5. Socioeconomic status. 6. Cultural and ethnicity factors. 7. Age group especially adolescence. 8. Psychological factors. 9. Environmental exposures. 10. Poor perception of dyspnoea.

show that patients with NFA were less likely to increase anti-inflammatory therapy during an acute attack compared to hospitalized controls [9]. This is consistent with the data from Ernst and coworkers showing that using one canister of beclomethasone per month was associated with a significant reduction in the risk of NFA and asthma death [14]. Socioeconomic indices which predict patients at greater risk from their asthma have been identified. Studies from New York and Chicago [15,16] have shown a strong association between income, race and asthma mortality. In both studies, lower socioeconomic status and ethnicity (black Americans versus Caucasians) were characteristics associated with a higher risk of dying from acute asthma. Closely related has been the finding that psychological dysfunction contributes to the risk of subsequent NFA episodes [17] and also these patients exhibit poor adherence with health care interventions [18].In a prospective study Campbell et al. evaluated 77 consecutive patients who presented with NFA and found high levels of psychiatric dysfunction as well as denial [19]. Data further supporting this increased risk is the fact that patients taking psychotropic medications are at increased risk of dying from their asthma [20]. There is accumulating evidence that environmental exposures not only contribute to the initial stimulus to the development of asthma [21] but that specific environmental triggers may be associated with greater risks of asthma morbidity and mortality [22,23]. There appears to be a minority of asthma patients with episodes of NFA who have impaired perception of dyspnoea. Kikuchi et al. showed that asthma patients who had an episode of NFA had a poor perception of dyspnoea compared to non NFA asthma patients and community controls [24]. Although there was no data presented on gender difference we have shown such a difference in males presenting to the emergency department (ED) with acute asthma [25]. In this study, males were likely to present with more severe obstruction compared to females. This gender bias for reduced perception of dyspnoea among males is further supported by a study which shows males much more

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likely to have a precipitous deterioration in asthma prior to mechanical ventilation than females [26]. Another group who appear to overlap with asthma patients at risk of sudden death are patients with a history of anaphylaxis to the ingestion of foodstuffs to which they are sensitized [27]. A retrospective review of the long term prognosis of 145 asthmatics requiring mechanical ventilation in France(1983–88) identified a 1 year mortality of 24.3%(95% CI, 18– 32) and a 36.2% mortality after 6 years [28]. In this study there were increased deaths in older patients and smokers.

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number. In Tables 3 and 4 we summarize the eight studies that have reported the results of educating and following patients with severe disease [30–37].

3.1. Setting Each of these studies identified hospitalized patients [30–34] with life threatening attacks or severe asthma exacerbations and emergency department attenders [35–37] at single centres. Clinical and educational follow-up was arranged as outpatients except for the 5 day in hospital ¨ educational intervention described by Muhlhauser et al. [33].

3. Delivering asthma education

3.2. Design Intuitively the delivery of an effective educational and therapeutic intervention to a high risk group should be more cost-effective than offering similar programs to less severe asthmatics. The objective is to reduce severe attacks that may be fatal or require hospitalization, subsequently improving quality of life and decreasing the utilization of the more expensive hospital based asthma resources. A 1992 study estimated that direct and indirect health care costs for asthma in the United States amounted to $6.2 billion of which $1 billion(42% of direct medical costs)was due to costs related to hospitalization [29]. Despite the large burden of illness, there are many questions that still need to be answered about effective delivery of education to high risk asthmatics. Factors that may affect the delivery of asthma educational programs to high risk patients include patient and physician factors and are listed in Table 2. Follow up interventions in high risk patients, particularly those with NFA are relatively few in

Five studies were randomized, controlled trials comparing an educational and self-management intervention with routine care. The other three studies were prospective cohorts including one descriptive study [30], one that evaluated NFA patients against non-compliant patients from the study group [32], and a 1 year before and after comparison of outcome data [33]. The strongest evidence of efficacy would be expected from the randomized trials. Recent recommendations about reporting of clinical trials have emphasized the potential bias that may result from the actual randomization process [38]. In three trials a quasi randomization process was used. Mayo et al. [34] used the last numbers of hospital chart identification and the numbers in each group were somewhat imbalanced, 47 vs 57 subjects. Alternate assignments to interventions according to days of attendance in the ED were used in two studies [36,37]. Yoon et al. [31] and Garrett et al. [35] did not describe their randomization process, there-

Table 2 Patient and physician barriers to the delivery of asthma education Patient 1. Non-compliance 2. Language barriers 3. Psychosocial 4. Lack of appreciation of the severity of illness

Physician 1. Time limited 2. Emphasis on acuity rather than chronic aspects of the disease 3. Communication skills

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Table 3 Baseline characteristics, duration of studies, and interventions in studies of asthma education in high risk patients Study (ref) year published

Setting / country

Age(y)

Maiman [36] 1979 Mayo [34] 1990 ¨ Muhlhauser [33] 1991 Ruffin [29] 1991 Zeiger [37] 1991 Molfino [32] 1992 Yoon [30] 1993 Garrett [35] 1994

ED USA Hospital USA Hospital Germany Hospital Australia ED/ Hospital USA Hospital Argentina Hospital Australia ED/ Hospital New Zealand

18–65 18–

Duration study (months)

Educator

Target

Materials

1.5

Nurse

I

Action plan*

8

MD

I

16–75

12

Nurse

12–65

28

MD

Small group (3–8) I

6–59

6

MD

I

PEFM, Spacer, Prednisone Action plan, oral steroid Action plan, PEFM, adrenaline, nebulizer Action plan, PEFM

16–59

18

MD

I

NA

16–65

10

MD

Action plan

2–55

9

Small group (5–8) I

Nurse, community HCWs

Action plan

*, action plans refer to written plans. ED 5 emergency department, I 5 individuals, HCW 5 health care workers, NA 5 not available, PEFM 5 peak expiratory flow metre.

Table 4 Impact of asthma education on high risk patients Study ref.

Study design

Comparison groups

Eligible n

Attended n (%)

Evaluated n

Outcomes ED visits

[36]

Randomized*

[34]

Randomized

[33]

Before/after

[37]

Randomized*

[29] [32]

Cohort Cohort

[30]

Randomized

[35]

Randomized

Nurses (3) 3 written material (2) Special clinic Usual care Cohort Allergist Generalist Cohort Attenders Non-attenders Education No education Education centre Usual care

289

289 (100%)

245

47 57 142

37 (79%) NA 132 (93%)

34 57

149 160 51 7 5 185

110 (74%) NA 45 (88%) 7 NA 39 37 190 (76%) NA

149 160 45 7 5 39 37 228(91%) 223 (90%)

251 249

31%† 29% 59% NA NA NA 22.1% 33.1% NA 6 NA 3 7 34% 33%

Hospitalization NA

0.4/patient 1.2/patient 39% (before) 22% (after) 1.3% 3.1% 9 1 NA 1 7 8% 10%

Deaths

NA

0 1 0 0 0 0 2 0 1 0 0

*, Randomization was by alternate assignment. †, % subjects receiving written instructions and making ED visits in the 6 week follow up for nurse identified asthmatic (31%), asthmatic nurse not identified (29%), staff ED nurses (59%). NA 5 not available.

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fore no explicit inferences can be made about potential biases. However, the control group in Yoon et al.’s study did have significantly more patients who had previous asthma education and used a PFM. Bias could be apparent in either direction: a potential difference could be harder to detect because of previous education and selfmanagement experience or this could represent a subgroup with poorly controlled disease that had been intensively targeted before.

3.3. Objectives Each study defined objectives somewhere in the text. Mayo et al. [34] investigated the hypothesis that the special clinic intervention would reduce hospitalizations and days in hospital for acute exacerbations. Yoon et al. [31] compared the readmission rate between groups and the impact on asthma control (questionnaire responses and lung function). Maiman et al. [36] hypothesized that educational interventions to increase self-treatment behaviour would reduce ED attendance. Garrett et al. [35] examined the effect on multiple variables of severity, self-management and compliance of a closer to home education centre. The education programme was designed to deliver education in a culturally appropriate context to an area of great socioeconomic need. Zeiger et al. [37] evaluated the impact of early referral to an allergist after an ED attendance on future ED visits, hospitalizations and lung function. For the non-randomized studies, Molfino et al. [32] tested the hypothesis that close follow-up of NFA patients could avert future NFA or fatal events. The authors acknowledged the limitations of their study design to achieve these objectives and describe the differences between those patients compliant or non-compliant with ¨ monthly scheduled visits. Mulhauser et al. [33] did not have a primary outcome of interest but evaluated frequency of severe attacks, hospitalizations, absenteeism, compliance and self-management skills. Ruffin et al. [30] hypothesized that airway hyper-responsiveness would lessen with appropriate treatment regimens and that NFA patients have more impaired perception of

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dyspnea compared to a group of other asthmatics.

3.4. Subjects These eight studies reported a total of 1592 eligible patients of whom 1361(85%) were evaluated in the final analyses. Subjects with NFA were specifically evaluated in two studies (n 5 57) [30,32] and at least another 15 with a history of intubation were included in Mayo et al.’s study [34]. These patients make up approximately 4.2% of evaluated patients, although this is probably a conservative estimate because subjects with NFA were not always described separately. Current smokers ranged from 5.1% to 34% of subjects and the totals for current and past smokers ranged from 22.8% to 54%. The inclusion of patients with severe asthma justifies the use of primary outcomes of health care utilization because an effective intervention would be expected have an impact. In contrast the well designed, controlled trial by Bailey et al. [39] probably had less chance to find differences in outcomes because of the severity mix of their patients, where only 16.5% of participants had severe asthma. Although, 48.5% of patients had attended the emergency department or been hospitalized in the previous year, only 16.2% of the usual care group and 13.8% of the self management group did so during the 12 month study period (P 5 0.993).

3.5. Interventions Education was combined with changes in medical management in each of these eight studies, emphasizing the need to provide full delivery of health care. The majority of interventions occurred in outpatient settings. The physician was primarily involved in four studies [30– 32,37], and worked actively with a nurse in another [34]. Three studies used a nurse delivery model alone [33,35,36]. Of interest are the findings by Yoon et al. of the increased likelihood of non-participation (70% vs 35%, P 5 0.006) when the patients’ physician was not involved in the study [40]. Our findings of poor attendance in a

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randomized trial of self-management plans, in a high risk population, are also consistent with the observations of Yoon et al. [41]. In our study, there were diverse attending physicians and the physician investigators managed the follow-up care for only a minority of patients asked to participate. Consistency of the treatment approach combined with awareness of the patients’ needs are expected in an ongoing interactive approach and are associated with better compliance [42]. Another aspect of an ongoing regular physician–patient interaction is the possibility to decrease waiting times and facilitate prompt review if asthma is worsening despite self-management intervention. Mayo et al.’s study of patients attending an inner city New York hospital successfully emphasized and encouraged physician accessibility [34]. All patients were followed by one physician who knew their history, and was actively involved in the education and adjustment of medication requirements. There is no definitive evidence that physicians are more important than nurses in delivering asthma care and education. Several studies have shown nurse run clinics or interventions are able to effectively improve outcomes in asthma patients [36,43,44]. However, for high risk patients, the family physician and specialist should be actively involved in conjunction with other health care professionals to maximize the benefits of available medical care for these patients. The optimal method to deliver education and self-management strategies is not certain. Wilson compared individual and small group education delivered by nurse educators to control groups that received a booklet or usual care in outpatient asthmatics [45]. The education groups showed greater symptom control and better metered dose inhaler technique. Although there were no significant advantages to the group sessions, cost-effectiveness may be a factor and the provision of a support group may allow patients to learn in a less threatening environment. Some patients may be better suited to individual interventions and others may prefer a small group session. The clinical trials reported by Mayo et al. [34] and Yoon et al. [31] found

significant positive results from an individual and small group approach respectively. The optimal number of teaching sessions and the timing of delivery is also not certain. However, the common denominator for all educational and selfmanagement interventions is regular and routine follow-up. This may be more important than the type of teaching method offered and should be emphasized when resources do not allow for educators, instructional material or meeting rooms. One of the greatest barriers to educational interventions is whether the patients with greatest need will comply or adhere to the program. A rigorous structured program of monthly visits may not appeal to many patients with severe asthma because of the demands to change behavioural patterns. We planned an educational and self management program for patients with severe and near fatal asthma but only 16 of 50 (32%) who agreed to attend made one visit with our asthma nurse educator [41]. Rather than schedule appointments before hospital discharge, we contacted patients after discharge, as did most of the investigators in the studies cited. Several emergency department studies evaluating patient follow-up with appointments found a positive correlation with appointments kept by providing a scheduled time and place before leaving the emergency department [46,47]. This approach needs to be further studied in asthma patients discharged from hospital. The difficulty in maintaining follow-up in some asthmatics makes inpatient educational interven¨ tions attractive. Mulhauser et al. [33] showed significant benefits from a 5 day hospitalization for intensive education with decreased severity of attacks, hospitalizations and absenteeism. It is unclear whether patients recovering from a severe attack would be able to assimilate enough information while in hospital to influence selfmanagement and the costs associated with prolonging hospitalization would be scrutinized carefully by most administrators. Avoidance of environmental allergens and irritants is fundamental to all self-management plans. The success of avoidance recommendations is usually not a primary outcome measure.

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However, evaluating the success of a specific intervention such as smoking cessation could conceivably be used as a surrogate of the potential success of avoidance strategies. Education about avoidance of irritants and allergens were specifically mentioned in the Methods sections of five studies [31,33,35–37] and two reported a specific smoking cessation intervention [31,35]. Garrett et al. found no impact on smoking cessation among the 34% of participant smokers in their community based study [35]. Smokers are also more likely to delay or not attend the educational interventions [31,37,40]. We feel an emphasis on smoking cessation should be specifically targeted only after compliance and a working partnership has been well established in these high risk patients. Involving family and household members in the education process may be important but also needs to be formally studied. Yoon et al. actively invited spouses and other key persons to attend the education session with the patient. [31,40] Unfortunately no data from this subgroup of attenders is presented. Garrett et al. [35] found adults attending the education centre more likely to have someone else in the home with the knowledge to cope with an asthma attack. The impact on measured outcomes is uncertain but there was no change in smoking patterns of household members. The prevalence of other household smokers may be as high as 25% [37]. Language and ethno cultural differences may be important in delivery of information and knowledge. Mayo et al. [34] provided same language instruction for almost all his study participants without written materials and found significant outcome improvement in the intervention group. The inclusion of Maori and Pacific Islander health care workers in the community programme in New Zealand had little impact on the attendance and outcomes in these patient groups [35]. Maiman et al. [36] evaluated the impact of an asthmatic nurse as the educator. They found the patients interviewed in the emergency department by a nurse with asthma, regardless of whether she identified herself as asthmatic, had fewer return visits during the 6 week follow-up. These results may not be due to

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similarity of experience and empathy of the nurse but because she was more enthusiastic and a better trained educator than the staff emergency department nurses. Written action plans are recommended by all asthma guideline statements [6]. Most incorporate action points triggered by PEF measurements. Studies evaluating action plans triggered by symptoms or PEF have found no difference in outcomes [43,44,48]. The actual compliance or self management with the action plan is an important limitation of this strategy [48]. ¨ Muhlhauser et al. identified a 38% (95% CI, 29–47%, P  0.0001) increase in reports of self management of medications after the education programme [33]. However, adherence to the specific written action plan for medications was not assessed. Garrett [35] found only 8% of patients with a PEFM considered using it an early stage of an asthma attack and 26% rarely or never used the PEFM. [49]. Scenarios for a slow (days) and rapid (1 h) onset asthma attack presented to well educated asthma patients attending a hospital clinic found only 42% and 15% (70% would start oral steroids) would increase inhaled steroids respectively and 54% and 16% would measure PEF [49]. Again, the approach of Mayo et al. [34] to provide accessible care and simple verbal instructions of what to do with worsening asthma without written aids is pragmatic and was very effective. The poor compliance seen in many studies represents an upper limit of effectiveness. In the real world outside the borders of a structured study, compliance with action plans is probably quite low. We cannot over-emphasize that the main benefits of education are realized in a setting of regular follow-up and repetitive review of the essentials of self management. Psychiatric features may hinder attempts to educate patients with severe asthma. A high level of denial was observed in 56% of 77 NFA patients studied in Australia [19]. Denial was correlated (r 5 2 0.24, P  0.05) with a clinical presentation of rapid deterioration rather than a progressive increase in symptoms. We found a high level of anxiety in NFA patients refusing participation in a structured self-management

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programme [41] Severe, unstable asthma leading to frequent hospitalization or NFA episodes, especially when due to non-compliance with medication or follow-up may benefit from a psychiatric assessment [50]. The underlying reason for non- compliance may be treatable with appropriate counselling or treatment from a psychologist or psychiatrist. Recognizing these needs may serve to reduce overall morbidity, NFA and fatalities in these high risk patients [51].

4. Future directions In this brief review we have identified patients at increased risk from their asthma and by definition patients who should be candidates for focused asthma education. There is a need for further research into improving the delivery of asthma education to these high risk patients (Table 5). In addition, their management will only become optimal if the physicians and allied health care workers caring for them provide an integrated approach based on evidenced based principles [52]. Although guidelines are useful to help establish standards of care, there is still a great need for improved implementation strategies [52]. Unfortunately standards of care for high risk patients in the past [53] as well as more recently continue to be less than optimal [54]. Government and other health care payers should realise that these patients consume a disproportionate amount of health care funding [55], and therefore a reduction in morbidity and mortality

in this group will lead to significant savings in acute health care costs.

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Table 5 Practice implications of asthma education for special high risk groups 1. Patients at high risk of asthma morbidity and mortality can usually be identified based on historical features and the profile of their medication use. 2. Because these patients use a disproportionate amount of health care resources they are especially worthy of targetted interventions. 3. Although there are a limited number of studies evaluating the efficacy of asthma education on high risk groups significant effects on health care utilization have been shown. 4. A greater impact occurs if there is a consistency in follow-up with ideally one physician continuing to follow the same patient. 5. High risk patients have significant psychosocial barriers to the delivery of asthma education and this should be considered in implementing medication changes and action plans. 6. A minority of high risk patients have problems with their perception of dyspnoea and may benefit from a peak flow meter.

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