PhD defence Anke Lenferink

self-management exacerbation action plans in patients with chronic obstructive pulmonary disease and common comorbidities: the copE-III study 

Chronic Obstructive Pulmonary Disease (COPD) is a chronic progressive lung disease. It is characterised by symptoms of dyspnoea, sputum purulence, wheezing and cough, with distressing exacerbations - acute deteriorations in respiratory health - that contribute to impaired quality of life and increased hospitalisations, mortality and healthcare costs. COPD is considered to be a complex, heterogeneous, and multi-component condition. Frequently existing comorbid conditions in COPD, such as cardiovascular diseases, mental health issues, and diabetes, have an important impact on disease severity, hospital admission rate, and survival. These comorbidities share common risk factors with COPD, such as ageing, smoking and inactivity. In addition, COPD and comorbidities have overlap in symptoms, e.g., breathlessness, fatigue. In COPD patients with the added complexity of comorbidities a “one size fits all” approach that focuses solely on COPD symptoms may be inadequate and could lead to the initiation of incorrect or delayed treatment. Multi-component COPD self-management interventions, targeted at behavioural change, are important in the management of COPD patients. Exacerbation action plans are an intrinsic part of these COPD self-management interventions.

In Chapter 2 we evaluate 22 studies in a Cochrane review comparing the effectiveness of COPD self-management interventions including an action plan for acute exacerbations of COPD with usual care. We observed that self-management interventions including a COPD exacerbation action plan are associated with improvements in health-related quality of life and a lower probability of respiratory-related hospital admissions, without excess all-cause mortality. For future studies, we recommend to cautiously only using action plans together with self-management interventions that are structured, but personalised, and often multi-component, with goals of motivating, engaging and supporting the patients to positively adapt their health behaviour(s) and develop skills to better manage their disease. To increase transparency, providing more detailed information regarding the delivered interventions will help increase the ability to provide stronger recommendations regarding effective self-management interventions that include action plans for COPD exacerbations. Safety of self-management interventions can be expected to increase further if COPD self-management action plans take into account comorbidities when used in the wider population of COPD patients with comorbidities. We were, however, unable to evaluate this strategy in the review. 

In Chapter 3 we report the design of the COPE-III self-management intervention, that combines self-initiated patient-tailored action plans for COPD and comorbidities (chronic heart failure, ischaemic heart disease, anxiety, depression, diabetes mellitus) with ongoing case-manager support. In collaboration with multiple disease experts, we developed daily symptom diaries for the symptom monitoring and action plans for self-treatment of individual’s COPD and comorbid condition(s).

In Chapter 4 we provide information regarding the integration of information from two previous COPD self-management interventions (COPE-I and COPE-II) in the development of our COPE-III self-treatment approach. Consistent with the COPE-II approach, the COPE-III intervention initiates treatment after a significant deterioration of symptoms that is beyond the individual’s level of symptoms in a stable health state. Similar to the COPE-I and COPE-II study, we have tried to ensure patient safety by providing easily accessible ongoing case-manager support.

In Chapter 5 we present a validation of the Partners in Health (PIH) scale to measure self-management behaviour and knowledge in Dutch COPD patients. Two subscales were found for the Dutch PIH data: 1) knowledge and coping; 2) recognition and management of symptoms, adherence to treatment. We recommend using these two subscale scores when assessing self-management in Dutch COPD patients. In addition, based on the discrepancies between the original Australian PIH and the Dutch PIH, we recommend changes and refinements of the PIH. We think that the PIH shows great promise in facilitating the identification of self-management skills needing improvement in COPD patients with comorbid conditions. There is however more research needed to evaluate whether the two-subscale solution is optimal for other populations and consensus is needed on a final version of the PIH, that can be validated in several settings and populations. Furthermore, an evaluation of the clinical relevance and an assessment of the responsiveness of the PIH will further facilitate the identification of patients who will receive benefit from COPD self-management interventions.

In Chapter 6 we demonstrate that our international multicenter randomised controlled trial is the first to test and confirm that patients with COPD and important comorbidities have better outcomes if they receive a self-management intervention that addresses their multiple conditions compared to usual care. We observed that exacerbation action plans for COPD patients with comorbidities embedded in an individualised, multi-faceted self-management intervention are effective in reducing the COPD exacerbation duration and respiratory-related hospitalisations without excess all-cause mortality. It also improved patients’ self-efficacy to prevent breathing difficulty. The self-management group reported a higher cardiovascular-related hospitalisation rate. The significant difference on cardiovascular-related hospitalisations however vanished when excluding the patients from the self-management group who experienced their first cardiovascular-related event during study follow-up, and had therefore not yet received an action plan for their cardiovascular problems. In addition, the self-management group reported lower emotional function scores, possible reflecting more symptom awareness due to self-management training. We used education, training, modelling and enablement to improve patient’ self-regulation skills and target uptake and optimal use of appropriate self-management behaviours. The exacerbation action plans for COPD and comorbidities and the associated self-management training should be considered as a treatment option for COPD patients with the added complexity of comorbidities. These self-management interventions should be further tailored to the patient’s needs and capabilities, especially focusing on case-manager support to enhance self-efficacy and (mental) health status.

In Chapter 7, the major results of the studies in this thesis are discussed and our findings are put into a wider context of self-management interventions. Some methodological considerations are provided, such as a selection of highly motivated patients in our study sample and a lack of process evaluation of our case-managers.

 In summary, our implications for future research and clinical practice are:

  • consider the self-treatment of comorbidities in patient-tailored exacerbation action plans together with associated self-management training for patients with COPD and comorbidities, especially focusing on (mental health) case-manager support;
  • cautiously only using action plans together with self-management interventions that are structured, but personalised, and often multi-component, with goals of motivating, engaging and supporting the patients to positively adapt their health behaviour(s) and develop skills to better manage their disease;
  • provide more detailed information regarding the delivered self-management intervention;
  • identify patient characteristics that predict successful COPD self-management; and
  • reach consensus on a final version of the Partners in Health scale, that can be used in several settings and populations.