D3. Self-management

Chronic disease management can broadly be defined as a comprehensive strategy for improving overall health status and reducing healthcare costs (Hunter & Fairfield 1997). It is well suited to chronic conditions as it takes a holistic approach, treating patients as individuals throughout the clinical course of a disease rather than viewing their care as a series of discrete episodes (Hunter 2000). The essence of disease management includes a system of patient education and self-management, implementation of practice guidelines, appropriate consultation, and supplies of medications and services (Hunter 2000). Self-management support is the systematic provision of education and supportive interventions by healthcare staff to support patients increase their skills and confidence in managing their health problems (Institute of Medicine Committee 2004).

Disease management approaches in COPD include a number of the Chronic Care Model domains. A systematic review by Peytremann-Bridevaux (2008) assessed the impact of COPD management programs attended by patients, which they defined as interventions with two or more different components (e.g. physical exercise, self-management, structured follow-up), at least one of which continued for 12 months, were delivered by two or more health care professionals and incorporated patient education. It found such programs improved exercise capacity and Health-related Quality of Life (HRQoL), and reduced hospitalisation [evidence level I]. However, it is unclear from this review which specific components of the disease management programs contribute the most benefit to patients. A Cochrane Review examined 26 trials of integrated disease management programs defined as “a group of coherent interventions designed to prevent or manage one or more chronic conditions using a systematic, multidisciplinary approach and potentially employing multiple treatment modalities.” The review found positive effects on disease-specific QoL measured by the Chronic Respiratory Questionnaire (all domains) and on the impact domain of the St George Respiratory Questionnaire (SGRQ). There were also positive effects on exercise tolerance, hospital admissions and hospital days per person (Kruis 2013) [evidence level I].

An updated Cochrane Review of RCTs and clusters RCTs of self-management support interventions published since 1995 included 27 studies and 6008 participants. Follow-up time ranged from 2.5 to 24 months. The review found improvement in HRQoL measures by the SGRQ with a mean difference from usual care of -2.86 points (95% CI -4.87 to -0.85). This is less than the minimal clinically important difference of 4 points. There was also a lower risk of at least one respiratory-related hospital admission (OR 0.75, 95% CI 0.57-0.98). The NNT to prevent one respiratory hospital admission over a mean of 9.75 months follow-up was 15 (95% CI 8-399). No excess respiratory-related and all-cause mortality risks were observed. The review had stricter inclusion criteria than previous reviews (Schrijver 2022).

A cluster RCT conducted in Canadian primary care of an integrated disease management intervention aimed at patients with frequent and/or severe exacerbations and comprising on-site spirometry, case management, education, and skills training including self-management education by a certified respiratory educator resulted in improved disease-related quality of life, improved disease knowledge and FEV₁ and fewer exacerbations and unplanned service use compared to usual care (Ferrone 2019) [evidence level II].  In another large multicentre randomised controlled trial (Rice 2010) involving veterans who received a single education session, an action plan for self-treatment of exacerbations and monthly follow-up calls from a case manager found that, when compared to usual care, the intervention group had a significant reduction in hospitalisation and ED visits for COPD, mortality and quality of life, measured with the Chronic Respiratory Questionnaire [evidence level II].

An alternative approach of home care outreach nursing was studied in a systematic review by Wong (Wong 2012), in which the intervention included home visits to provide education and social support, identify exacerbations and reinforce correct inhaler technique.  They also found a significant benefit in quality of life, measured by the St George’s Respiratory Questionnaire (SGRQ), but no significant effect on mortality or hospitalisations [evidence level I].  In all these studies, it remains unclear which specific components contribute the most benefit to patients, are the most cost-effective or should be combined to provide optimal benefit on the many different outcomes.

It is important to note that not all studies of disease management programs have shown benefit. Kruis et al (Kruis 2014) conducted a cluster RCT in 40 general practices in the Netherlands (1086 patients with COPD by GOLD criteria) of a multifaceted disease management intervention comprising multidisciplinary team of caregivers trained in motivational interviewing, setting up individual care plans, exacerbation management, implementing clinical guidelines and redesigning the care process. The intervention was compared to usual care. There was no difference in HRQoL. The differences in findings between studies may be related to variation in implementation of interventions. One of the differences between studies was the extent of emphasis on and uptake of physical activity/exercise training interventions.

Box 9: Comparison of outcomes for COPD management programs

Outcome presented as OR = odds ratio or (W)MD = (weighted) mean difference, with 95% confidence intervals in brackets.  *Hospitalisation and ED visits. # difference per 100 patient years.

A number of systematic reviews have been undertaken to evaluate the effect of self-management in COPD (See Figure 6 for abbreviated table and Appendix 6 for full table).  Whilst these have consistently reported improvements to quality of life, there have been conflicting findings in terms of their effect on healthcare utilisation (Jolly 2016, Jonkman 2016a, Jonkman 2016b, Majothi 2015, Schrijver 2022).

A Cochrane review found self-management interventions that included action plans for exacerbations were associated with reduced probability of respiratory-related but not all-cause hospitalisation, all-cause mortality, dyspnoea or exacerbation rate (Lenferink 2017). However, exploratory analysis showed a small but significantly increased respiratory-related mortality. The differences may be related to differences in the study populations, study context and extent of self-management support provided. Other reviews of self-management in COPD have found reductions in both respiratory-related, ED (Schrijver 2022), and all-cause hospitalisations (Jonkman 2016b), a reduction in urgent health care, improved exercise capacity measured by the 6-minute walk distance (6MWD) (Cannon 2016, Schrijver 2022), and improved anxiety and repression (Schrijver 2022). However, reviews have also reported no differences in 6MWD, anxiety and depression, hospital admissions and mortality (Majothi 2015,  Cannon 2016, Jolly 2016, Jonkman 2016b). A systematic review and meta-analysis of nurse-led COPD interventions concluded that such interventions were associated with improvements in 6MWD, activities of daily living, and anxiety and depression, but failed to reduce the number of hospital admissions or improve HRQoL measured using the SGRQ. Interventions carried out by hospital and respiratory nurse-led interventions were associated with greater effectiveness compared to community nurses (Aranburu-Imatz 2022) [evidence level I]. These systematic reviews should be interpreted with caution due to the methodological weaknesses of the studies and heterogeneity of the interventions and outcome measures.

In 2019, Aboumatar et al (2019) reported an RCT that showed increased rates of exacerbation in the intervention group without any change in health status. They recruited patients admitted to hospital with a COPD exacerbation, or patients who had a previous diagnosis of COPD who were hospitalised and were receiving treatment for an increase in COPD symptoms. Patients (n=240) were randomised to a three-month intervention that involved: 1. A transition support aimed at preparing patients and caregivers for discharge and ensuring they understood the post-discharge plan of care, 2. Individualised COPD self-management support to help patients take medications correctly, recognise exacerbation signs and follow action plans, practice breathing exercises and energy conservation techniques, maintain an active lifestyle, seek help as needed, and stop smoking, and 3. Facilitated access to community programs and treatment services. The intervention was delivered by COPD nurses. Usual care involved a general transition coach to follow the patient for 30 days after discharge, with a focus on adherence to the discharge plan, and connecting to outpatient care. The intervention resulted in an increased number of COPD-related acute events per participant at 6 months compared to usual care (difference 0.68 (95% CI 0.22 to 1.15); p=0.004). There were no differences observed in health status measured by the SGRQ at 6 months (difference 5.18 (95% CI 2.15 to 12.51); p=0.11). The interventions included assessment and management of knowledge and skills, physical activity, pharmacological and nonpharmacological interventions and health behaviours.

A RCT reported in 2022 evaluated the effect of self-management strategies delivered by health care professionals compared to a dual intervention of self-management delivered by health care professionals and peer supporters (defined as patients with COPD and their family- caregivers who were nominated by pulmonary clinic and rehabilitation program staff). Of the 1061 patients identified as eligible, only 292 were randomised. There was no effect on the primary outcome of quality of life measured by the SGRQ at 6 months (unadjusted difference of 1.26 points with 95% CI -5.44 to 7.96, p=0.591), nor at nine months. The intervention did however improve the secondary outcome of COPD-related acute care events during the 6-month intervention (Aboumatar 2022) [evidence level II], signalling the potential role of peers and family carers in the management of COPD.

Nurse-led COPD self-management programs have been associated with improved 6MWD, activities of daily living, and anxiety and depression (Aranburu-Imatz 2022) [evidence level I], as well as lower mortality and reduced emergency department attendance and hospitalisations through the emergency department (Wang 2024) [evidence level III-2]. A longitudinal cohort study in Hong Kong compared attendees (n=3,093) and non-attendees (n=5,955) of a territory-wide Nurse and Allied Health Clinic–Respiratory Care (NAHC-Respiratory) clinic program, followed up over a 6-year period. Located in primary care, the NAHC-Respiratory program delivered COPD education, chronic disease self-management education, and a brief rehabilitation program to outpatients with COPD. Positive effects were observed with statistically significant reductions in measures of mortality (all-cause hazard ratio [HR] = 0.84, 95% CI 0.78-0.90; pneumonia-caused HR = 0.85, 95% CI 0.74-0.97; respiratory-caused HR = 0.86, 95% CI 0.77-0.96; and cardiovascular-caused HR = 0.74, 95% CI, 0.59-0.93), emergency department presentation (incidence rate ratio [IRR] = 0.92, 95% CI 0.86-0.98), or emergency department presentation leading to hospitalisation (IRR, 0.89; 95% CI, 0.83-0.95). No significant effects were observed in overall hospitalisation or length of stay (p=0.10) (Wang 2024) [evidence level III-2].

The high degree of heterogeneity within interventions and study designs limits the ability to analyse which characteristics of self-management programs are associated with the most significant improvements.  However, a meta-regression review of complex interventions identified that general education, exercise and relaxation therapy components contributed to reduced use of urgent healthcare (Dickens 2014) [evidence level I]. Additionally, Jonkman et al (Jonkman 2016a) demonstrated that intervention duration, regardless of composition, displayed the strongest association with reduction in all-cause hospitalisations in COPD patients.  Newham et al. (2017) identified that interventions targeting mental health were the most effective in improving Health-related Quality of Life (HRQoL) and reducing ED visits.

Health coaching, when using motivational interviewing methods, and including components of goal setting and education, when delivered in person, has been demonstrated in a meta-analysis of 10 RCTs, to lead to significant improvements in quality of life, as well as COPD–related hospital admissions (54% reduction [OR 0.46 95% CI 0.31 to 0.69]).  However, the benefit appears not to be sustained beyond 12 months post-intervention (Long 2019).

Overall COPD self-management programs appear to improve HRQoL. The effect of these interventions on exacerbations remains unclear. Studies have reported positive outcomes, whilst others have reported increased rates of exacerbations associated with self-management interventions (Aboumatar 2019). Due to the heterogeneity of the study designs, setting and outcomes, and conflicting results, we are unable to make recommendations regarding the essential elements of a COPD self-management program.

Written COPD Action Plans

The concept of written action plans for patients with COPD is derived from their success in asthma management indicating doses and medications to take for maintenance therapy and for exacerbations. Instructions for crises are often also included. Lung Foundation Australia has developed a COPD Action Plan which can be downloaded from https://lungfoundation.com.au/resources/?user_category=32&search=copd%20action%20plan. The Action Plan should be completed by the clinician and patient together and guides the patient in recognising when their symptoms change and what action they should take.

A Cochrane systematic review by Howcroft et al synthesized the findings of seven RCTs confucted in people with COPD in which the intervention included the provision of actions. A single short educational component was included in the interventions in which the clinician personalised the plan according to management needs and symptoms. Ongoing support directed at the use of the action plan was permitted, however, studies with a broader self-management approach or exercise intervention were excluded. The comparator was usual care. Action plans reduced ED visits and hospital admissions (Howcroft 2016). The number needed to treat to reduce one hospital admission was 19. Studies that included an exercise program and longer education sessions were not included in this review. A subsequent RCT not included in this review confirmed a reduction in ED visits in patients who utilised an action plan (Zwerink 2016).

A multicentre RCT (Lenferink 2019) (n=201) evaluated the effect of patient-tailored symptom-based written action plans embedded within a multi-disease self-management intervention on COPD exacerbation days compared to usual care in patients with COPD and one or more comorbidity. Patients were given written action plans to prompt management of both COPD exacerbations and comorbidities (congestive heart failure (CHF), ischaemic heart disease (IHD), anxiety, depression and diabetes), together with a self-management education program. No difference in the primary outcome of COPD exacerbation days/patient/year was observed (intervention median 9.6 (interquartile range (IQR) 0.7 to 31.1) versus usual care 15.6 days (3.0 to 40.3); (Incidence Rate Ratio (IRR) 0.87, 95% CI 0.54 to 1.30 (p=0.546)). There were however observed differences in the secondary outcome of duration of COPD exacerbations, in favour of the intervention (8.1, IQR 4.8 to 10.1 versus 9.5, IQR 7.0 to 15.1 days; p=0.021). There was no difference in overall HRQoL between groups, and the intervention group reported poorer emotional function on the CRQ compared to usual care.