Supported self-management for COPD: making progress, but there are still challenges

Respiratory specialists familiar with the success of supported self-management in asthma [1] may be excused for feeling disappointed by the evolution of evidence in chronic obstructive pulmonary disease (COPD). The promise of early studies [2–4] was seemingly dashed by a series of negative trials [5, 6] and a trial was even terminated early for fear of a detrimental effect [7]. The most recent Cochrane review, however, concludes that interventions to support self-management reduce respiratory-related and all-cause admissions, reduce dyspnoea and improve quality of life [8]. The interventions in the included studies were heterogeneous and complex; and it was not possible to identify the individual components of supported self-management responsible for effective outcomes. A wider review of trial-level data was also unable to identify the most important components [9]. The study by Jonkman et al. [10] in this issue of the European Respiratory Journal, which explores the characteristics of effective self-management interventions in an individual patient data meta-analysis, is therefore a useful contribution to the literature.

Difficulty identifying early exacerbations

In retrospect, the clues that self-management in COPD would be more challenging than in asthma were already available. From the health service perspective, one of the main goals of self-management is to enable patients to recognise that their condition is deteriorating and take timely, appropriate action that can prevent further development of an exacerbation and reduce the risk of an admission. However, qualitative studies in people with COPD highlight the difficulty people have in distinguishing “bad days” from the onset of an exacerbation, observing that it is “only afterwards that you know you are not well” [11]. When asked about the symptoms that indicate an exacerbation, many patients describe nebulous symptoms of “just feeling rough” [12], an observation that will resonate with any general practitioner who has been asked to visit a COPD patient in the throes of an exacerbation whose complaint is no more specific than “unwell”. Analysis of telemonitoring data suggests that it is the minority of patients who can log discrete episodes of increased breathlessness, cough and purulent sputum [13]. Most experience a rolling pattern of on-going symptoms with little clarity on when treatment is appropriate. This difficulty in distinguishing the onset of an exacerbation may be one reason for the negative findings of Bucknell et al. [6] in their trial of self-management. They observed that only 42% of participants were “successful self-managers” and, in a post hoc analysis, showed that the intervention was effective in this sub-group. Calverley et al. [14] predicted this difficulty a decade ago from analysis of diary cards from trial participants. Despite an increase in mean symptom scores, on an individual patient basis concurrence between an exacerbation event and a change in breathless, chest tightness, cough and night wakening was evident in less than half of the patients. Effective self-management in COPD must go beyond symptom recognition and treatment response.

On-going support for self-management

Taxonomies of self-management support derived from studies in a range of long-term conditions have identified components reflected in the COPD self-management literature [17]. Jonkman et al. [10] sought to identify components of the interventions associated with a positive outcome and concluded that only the duration of the intervention showed consistent associations with all-cause admissions. The longer the intervention was supported by professional review (range 1 day to 24 months) the greater the reduction in admissions. This resonates with the findings of the meta-analysis from Jordan et al. [9] which suggested that interventions that were more supported by healthcare professionals improved quality of life and reduced admissions. Proponents of self-management will interpret this as a dose response to the self-management intervention; cynics may speculate that the active ingredient was the professional review rather than the self-management. The truth probably lies in a combination of these explanations. Self-management is not a single event; for behaviour change to be maintained continued support is crucial. We observed the gradual evolution of self-management skills in the qualitative evaluation of “Light Touch” (a COPD self-monitoring service supported by NHS Lothian) in which the daily professional oversight of telemonitoring was replaced by access to a helpline; over 6 months patients gradually gained confidence in managing their own condition [21].

Conclusion

The individual patient data meta-analysis of Jonkman et al. [10] adds support to the increasing evidence that supported self-management can reduce admissions [8, 9], and highlights that interventions involving on-going professional support were more effective [10]. There are, however, significant unresolved challenges for patients, professionals and healthcare systems. Clinical “action plans” do not reflect the difficulties patients have in identifying the onset of an exacerbation and rarely consider the impact of multimorbidity. As well as medical self-management, patients (and their carers) need advice to support the psychosocial challenges of living with the chronic disabilities of COPD, and healthcare professionals must be skilled to elicit and respond to the patients' perceptions and priorities [28]. Healthcare systems must adapt their services to providing on-going flexible support for self-management within financial and resource constraints. Finally, we need to measure success not only by the health service priority of reducing admissions, but also aspects of general well-being and markers of independent living as we seek to support people living for many years with the disability of COPD and other long-term conditions.