An increasing emphasis is being placed on the management of chronic disease, much of which has been transferred to healthcare professionals working in the community. Chronic obstructive pulmonary disease (COPD) is a cause of significant morbidity and mortality and a major contributor to the occupation of hospital beds when patients are admitted with exacerbations. With the advent of evidence-based guidelines for the diagnosis and management of COPD including smoking cessation and pulmonary rehabilitation programmes, an improvement in information and outcomes for patients and carers alike would be expected.
In their paper, Caress et al. (2010) highlight the importance of exploring patients’ and carers’ perceptions of what help and advice is available for COPD, and whether clients are able to gain access to it. Their study used in-depth interviews with 14 patients and 14 carers in the North West of the UK. They correctly acknowledge that the responses from those who choose not to participate may have been different. They comment that a reason for non-participation was not available; however, gender, smoking status and disease severity could have been obtained from notes and would have been useful in formulating a hypothesis as to why these patients had not participated, and how such groups may be reached in the course of future research. Such non-responders often represent the more difficult to reach members of any disease cohort who may have a greater unmet need. Current smokers and women were less likely to participate in a qualitative study to explore factors affecting their willingness to accept the offer of pulmonary rehabilitation (Harris et al. 2008).
The authors mention that patients did little to maximise their health other than participate in pulmonary rehabilitation. Pulmonary rehabilitation has been shown to have a beneficial effect on health outcomes for patients with COPD. Such programmes included information on exercise, diet, exercise, dealing with anxiety and depression, managing breathlessness, etc. All but one of the patients interviewed found pulmonary rehabilitation helpful. Therefore, the real question is what were the barriers that these patients faced in translating what they learnt during pulmonary rehabilitation into practice and maintaining the benefits? Studies undertaken in the USA (Nguyen et al. 2009) and Germany (Mittag et al. 2006) have shown that telephone follow-up after completions of formal exercise–based programmes improved patient concordance and maintained the benefits.
Patients and carers seemed to have firm views about what could be done and how they could help themselves. The emphasis was mainly on taking medications and thus medicalisation of their illness with the potential for disempowerment. Patients’ lack of information about their illness has previously been reported as a barrier to its management (Seamark et al. 2004, Barr et al. 2005). Some work has been carried out on coping strategies in patients with chronic illness with the emphasis on development of self efficacy. Some patients have passive coping strategies and readily defer to ‘the experts’ while others adopt active coping strategies (Fraser et al. 2006). Self blame, and low expectations of themselves and their treatment may contribute to this feeling of helplessness (Morgan et al. 1983, Fischer et al. 2007).
The impact of chronic disease on carers is well documented in COPD, and it is for this reason that carers are invited to participate in appropriate elements of the pulmonary rehabilitation programmes. There is obviously a need to look at how to emphasise to patients and carers alike the importance of self help and self care particularly in view of the increasing numbers of patients with chronic diseases. The UK Department of Health (DH 2010) has recently published a key document improving the health and well-being of people with long-term conditions and a consultation document on COPD (Dept of Health 2010). One of the important areas identified in the consultation document is the provision of support to people with COPD and their carers by offering practical advice and education on managing their disease. In the UK, many Primary Care services have developed their own protocols for the management of COPD which include supporting patients and carers with self management. Therefore, it is not that the information does not exist, or that patients have not been given it in some form or another. What seems clear is that they have not been provided this information in a useful format (to them) or they have forgotten it.
Caress et al. (2010) recognise fear of breathlessness and anxiety/depression as major barriers which patients with COPD face to taking a more active physical role in their health improvement. Pulmonary rehabilitation programmes do include strategies for helping with these issues, e.g. pursed lipped breathing. At present, health care professionals are required to actively seek and treat the symptoms of depression in those with chronic disease.
The authors appropriately identify the need to understand what factors might motivate patients with chronic disease adopt or maintain behaviours that will improve their health. Identification and treatment of depression in both carers and patients is key, as participation in pulmonary rehabilitation programmes and drop-out is much higher in those with depression (Garrod et al. 2006), and this is likely to be the same for other health promoting activities. The difficulty for healthcare professionals is that we spend most of our time trying to encourage patients to adopt healthier life styles and we have to accept that some of them just are not interested, whether because of stubbornness, lack of self efficacy or depression. Our challenge is trying to find out what works and how to implement the intervention for those who want to change, without becoming de-motivated ourselves.