Results

Of 343 individuals identified as eligible for enrolment, completed survey responses were received from 293 at baseline and 212 (72% of responders) completed the 12 month surveys and were included in this analysis. Most of the 61 subjects lost to follow up declined to participate further in the study. There were no statistically significant differences for the groups with and without 12 month follow up when compared for age, sex, education, household income, baseline asthma status, medication use, or lung function. There were no significant differences between the eligible group who did not return baseline surveys and the study subjects when compared for age, sex, or lung function.

The sociodemographic and clinical characteristics of the study population are shown in tables 1 and 2. The mean (SD) age was 41 (19) years. All subjects currently had moderate or severe persistent asthma according to the criteria of the NAEPP guidelines.11 These patients reported using relatively intensive medication regimens compared with those described in community surveys.30 ,31There was a relatively low level of formal education compared with that in the Australian population as a whole.32 There was also a relatively high proportion of income assistance with 54% receiving some form of government pensions or allowances compared with a national figure of 30%.32 Over half (57%) reported having financial difficulties over the past year, and 40% indicated that concerns about costs had caused them to delay or avoid seeking care needed for their asthma in the previous 12 months.

Discussion

The results of this study in patients with moderate to severe asthma from a diverse range of sociodemographic backgrounds indicate that, on average, individuals in this at risk group do not desire to be predominantly responsible for decisions regarding asthma management. These findings are similar to those found by Gibsonet al who studied both community asthma sufferers and those following a recent hospital admission.13 Multivariate analysis showed that autonomy preferences were associated with patient characteristics such as attitudes regarding adverse effects of medication, active coping mechanisms for dealing with asthma, cost concerns, and the level of formal education. Aspects of the patient-doctor interaction—specifically, the extent to which patients perceive that their doctors seek to involve them in decision making—also showed a significant association with autonomy preferences. Possession of a written action plan was not associated in the multivariate analysis with autonomy preferences in the Moderateattack, which is the vignette that corresponds to their use.

Asthma management decisions can be complex and it is impossible to codify every contingency that patients might face in managing their asthma. The objectives of asthma management are the acquisition of sufficient knowledge to make sense of changing symptoms and lung function, together with the development of skills and a positive approach to problem solving33 which can be described as effective self-regulation.34 It is clear that these objectives remain unfulfilled in many instances. A pattern emerges from our data where patients regard making changes to medications in response to increased symptoms to be a negotiable issue to be decided with a predominant input from their doctor, and most would not initiate these changes without consultation. However, patients felt strongly that the decision as to what circumstances would initiate the process of consultation should be left up to them. This is so, regardless of whether the patient has been provided with a written asthma action plan outlining when and how to increase medication when symptoms worsen. This finding has important implications for the use of written action plans as a major tool of asthma self-management.

The practical significance of these results lies in the previous finding of an association between lower decision making autonomy preferences and a higher risk for asthma hospital admissions over the subsequent year, independent of the baseline level of asthma control and medication use.16 Delays in initiating appropriate changes in care in acute attacks have been cited as a factor in adverse asthma outcomes, including death.35 To deal with this, two separate areas of decision making by patients may need to be addressed. The standard action plans currently in use will not be appropriate for all patients. Merely providing a written plan will not necessarily assist patients to initiate changes in medication during acute attacks unless the question of whether this will be done without consultation with a physician has also been specifically negotiated, rather than left unstated or implied. The clinician may need to decide, in negotiation with the patient, whether to emphasise the appropriate initiation of medication changes in response to an attack or to concentrate on the appropriate time to seek help as the major aspect of self-management. Written action plans will need to be personalised to each patient. Our results suggest that active, problem focused copers with a high desire for control over management decisions will accept initiating treatment changes using standard action plans. Individuals with low autonomy preferences may need far more conservative action points with the focus on how and when to seek direct medical assistance. Easy access via telephone to a designated asthma educator or case manager, or to the physician, may be helpful for these individuals. This approach has been successfully integrated into some asthma management programmes.36 The asthma API may be useful in identifying which course is more appropriate in a particular individual, but this now needs to be validated in a prospective study. Whether expressed autonomy preferences reflect actual behaviour in clinical situations is unknown. There is evidence to show that, where responses to a hypothesised asthma attack scenario do not accurately reflect actual patient behaviour, the reality may be more worrisome than the simulation.37 Further research is needed to examine the link between expressed preferences and actual patient self-management behaviour.

A second goal of this study was to provide some insight into what factors might be associated with autonomy preferences in patients with moderate or severe asthma. The results suggest an interplay between an individual's psychological make up and personal demographic circumstances. Formal education plays a key role and, when education is taken into account, the effect of age on autonomy preferences disappears. Education has been associated with autonomy preferences in other conditions14 ,38 but had not been previously examined in asthma patients. Cost concerns of patients that delayed treatment were an issue in both the Totalscale and in the Moderate attack, emphasising the powerful influence economic circumstances exert over behaviour and attitudes in what may be regarded by clinicians as a relatively straightforward medical situation. Given the nature of the questions asked in this scenario, it is possible that these items may, for some people, be just inquiries of their perceived ability to afford the cost of the medicine. It would seem unlikely that patients will enthusiastically initiate increases in medications or seek medical advice if the cost implications of these actions weigh heavily in their assessment.39 The predominance of cost concerns over perceived financial difficulties on autonomy preferences may relate to differences in the priorities of some patients who have to make choices about spending options. The issue of whether there are other non-financial barriers to care was not explored in this study, and the potential influence on preferences for decision making autonomy of these factors is an area for future examination.

Individuals who expressed strong concerns about the adverse effects of medications also desired retaining autonomy over decision making. These patients also said that concerns about side effects stop them taking many asthma medications. Our data do not show whether the concerns held by patients were erroneous or unwarranted fears, or if they arose out of previous adverse experiences. From the perspective of pragmatically attempting to enhance appropriate self-management in exacerbations, whether these fears are unwarranted or not is less important than the realisation by clinicians that real fears exist and have a major influence on attitudes and behaviour in asthma management.

Interventions that encourage patients to negotiate treatment decisions with their doctor show improved outcomes in some chronic conditions.2 ,40 A positive doctor-patient interaction has beneficial effects on patient adherence and behaviour in asthma.39 ,41 Our results suggest a critical role for the attitude and behaviour of the doctor in fostering decision making independence. Proven techniques exist to improve communication, patient education, and involvement.34 The integration of these techniques into an intervention directed towards children with asthma has been associated with improved outcomes, including reduced hospital admissions.42 ,43 Although the measure of PDM style was based on patient report only, and not on observation of physicians, it can be argued that the perception of the patient is ultimately the only criterion by which the physician's efforts in this area can usefully be judged. Given that a large proportion of the variance in autonomy preferences was not explained by the wide range of variables considered here, it would seem that the only way a clinician can ascertain an individual's desire for involvement in decision making is by some form of direct inquiry.38 This may require a definite change in current practice, as eliciting patients' preferences and level of understanding are reported to be rare components of patient-physician discussions in primary care.44

The nature of the study sample, with all subjects having moderate to severe asthma, may limit the generalisability of these results. It is possible that a community sample with less severe asthma may express different levels of self-management autonomy preferences, although this was not found by Gibson et al.13 A recent representative population survey in the US found that up to two fifths of all adults with a physician's diagnosis of asthma had symptoms at a similar level as the subjects in this study.45 In addition, individuals with socioeconomic disadvantage may have different attitudes from those with higher socioeconomic status. Although the sample had a higher proportion of people with lower income and education than the general population, it was still diverse in terms of all the sociodemographic variables assessed. While acknowledging these limitations, a number of studies have shown that socioeconomically disadvantaged groups are at risk for adverse asthma outcomes, and hence ascertaining factors that influence acceptance of autonomy in self-management programmes in these people is important. It is possible that lower education may produce difficulties in responding to the questionnaires and produce biased results. However, there were no difficulties noted during the survey period, and the internal consistency measures did not suggest inconsistent patterns of responses as might be expected if there were major problems.

There seems little reason to suppose that an extreme “consumerist” approach to health care46 is favoured by many patients with moderate to severe asthma. It appears that an approach that deals with self-management individually and in partnership with physicians is the preferred option for most patients and has the most chance of success. In the self-management of asthma the issue of how much autonomy patients want in decision making and how this is best accommodated will need to be directly addressed. The difficulty is that this will be demanding of both the time and the emotional and clinical resources of the attending clinicians.