Self-care for patients with COPD – Formal Proposal of the Pilot
An estimated 3 million people have chronic obstructive pulmonary disease (COPD) in the UK. Most people are not diagnosed until they are in their fifties. However more people are being diagnosed with COPD at a younger age – from their late thirties to their early fifties. COPD is a condition that makes breathing difficult. COPD is a broad term that covers several lung conditions, including chronic bronchitis and emphysema. It usually develops because of long-term damage to the lungs from breathing in a harmful substance (such as cigarette smoke or chemical fumes). The treatments available for COPD help people to breathe more easily, but they don’t repair the damage to the lungs.
COPD is predominantly caused by smoking and is characterised by airflow obstruction that is not fully reversible. The airflow obstruction does not change markedly over several months but is usually progressive in the long term. Exacerbations often occur, when there is a rapid and sustained worsening of the patient’s symptoms beyond normal day-to-day variations.
There is no single diagnostic test for COPD. Diagnosis relies on a combination of history, physical examination and confirmation of airflow obstruction using spirometry.
Context of self care
A significant amount of work has been undertaken to promote self-care and provide patient education packages to support patients suffering from long term conditions such as COPD.
The evidence base suggests that it is not clear how effective self-care or patient education is in isolation. For example, a Cochrane Review of self-management education for patients with chronic obstructive pulmonary disease, (Effing et al, 2009) found that it is not clear what the influence of self-management education is for patients with COPD. In this review, the medical literature was systematically searched for studies assessing the effects of self-management education in COPD. Self-management may reduce hospital admissions and reduced GP appointments. However, because of heterogeneity in interventions, study populations, follow-up time, and outcome measures, data are still insufficient to formulate clear recommendations regarding the form and contents of self-management education programmes in COPD. The review concluded that there is an evident need for more large RCTs with a long-term follow-up, before more conclusions can be drawn.
More recently an editorial in Thorax (Morgan, 2011) indicated that while the evidence may be variable regarding self-management, it is clear that a successful common feature of self-management for COPD is the establishment of Action Plans. These are usually in written format. Morgan suggests that in isolation – Action Plans may not be effective – but provided as part of a package, integrated into the care pathway for each patient – they may well be worthwhile. Crucially, it is, according to Morgan, the delivery of the Action Plan to the patient that makes the difference. An Action Plan will only work or be adhered to if it is delivered in the context of more extensive, individualised self-management education, and in the context of the whole pathway of care for COPD. This point is amplified by research published by Trappenburg et al (2011) which showed that individualised written Action Plans along with the support of a case manager – can decrease the impact of exacerbations, decreased symptom intensity and accelerated recovery of health status and symptoms.
In 2010, the engagement team at NHS East Lancashire worked with the Pulmonary Rehabilitation Service to consider how the basic concepts of self-care and principles of expert patients could be applied to the Pulmonary Rehabilitation Course. A workshop lasting no more than one hour, with elements of self-care and self-management were developed and included: (1) local resources and support mapping (2) self-care tips (3) working with your health professional (4) using health services appropriately (5) making sense of health information. The course was presented to 38 COPD patients and received positive feedback from attendees. Longitudinal outcome evaluations have not been undertaken but this course has the potential to be a useful addition to support COPD patients.
In 2011, the Pendle CCG ran an innovative weight loss programme called the Pendle Weight Loss Challenge. This was successful in that participants who got involved lost weight through the use of peer support, clinical leadership and self-care support. The emphasis of the ‘ challenge was that through regular monitoring of weight, the establishment of SMART goals through an action plan, and peer support, participants could stick to the programme because it was uncomplicated and straightforward. The premise behind this was that the more complicated the programme was, the less engaged and the more likely it was to fail. The additional support for participants through simple marketing materials and social media helped.
Engagement and communication support
The engagement and communication team have historically supported self-care using ‘tried and tested’ self-care materials – both for the general population and specifically for groups such as COPD , CHD, diabetes and patients with other long term conditions. The input of the communication and engagement team is given on the premise that, as mentioned, above, the clinical input and the care pathway is established and effective.
Historically the team have provided group and one to one ‘self-care skills’ training. However it is recognised that this support can be augmented through the provision of marketing and communication material and the use of social media such as facebook, Twitter, or websites, as well as traditional media such as self-care guides (ie, top 10 tips), leaflets, workbooks and posters. All of these can be developed in-house by the communication and engagement team to support clinicians in the delivery of COPD care. The team are also well positioned to evaluate the impact of these interventions, in conjunction with clinicians and commissioners.
The above mentioned basic level of self-care promotion could be further promoted with the development of an ‘expert patient’ programme that targets the newly diagnosed COPD patients. These could be identified at time of diagnosis by the GP practice. The patient could receive a ‘welcome pack’, which could contain standardised information and an invitation to join a COPD patient group. The group could be facilitated by health educators but the expectation would be that members of the group would become “activated” in essence – and ‘turned on’ to the self-care model. Individual groups of patients could link up to help pursue goals that they set themselves relating to exercise tolerance, or smoking cessation. Social media could be harnessed to support this, as well as the emerging ‘PIE’ (patient information exchange) web resource.
Alongside the programme, an education” prescription” could be developed, tested and evaluated to assess its effectiveness so that it could be rolled out in other locations. Using the experience from the Pendle Weight Loss Challenge, we may secure incentives in the form of motivational prizes from local businesses or the leisure trust.
In addition to this, a process of outreach to large employers, educational establishments, retail environments (such as supermarkets and town centres), and voluntary, community and faith sector (VSFS) networks could be mobilised.
The unique selling point of this proposal is that it focuses on patients at the start of their ‘COPD journey’ and empowers them early and where the impact in terms of better management, reduced exacerbations, and reduced admissions can be realised, whereas the current emphasis is on rehab of the patient who have already had several admissions.
It is clear that there is a need to provide self-care support to COPD patients. There is no shortage of materials already available, and there is scope to modify information to ensure it is relevant and meaningful to local service users.
A ‘programme’ of support – based on action plans, and SMART goals with support from clinicians, commissioners and the communication team would – if it was kept simple be worth testing out.
That a project group scopes out the support ‘programme’ and plans to test it out and evaluate it.
David Rogers/Stuart Berry
AD: Communication and Engagement/CCG Clinical Lead Communication & Engagement