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The hidden cost of COPD: results of the NiP survey

The COPD online survey took place from 11-25 October 2010. A total of 761 primary care nurses completed the survey, comprising 74% practice nurses, 15% nurse practitioners, 9% district nurses and 1% health visitors. The vast majority of respondents (83%) stated COPD was an area of
special interest. This survey was developed and sponsored by MSD.

Around 900,000 people have been diagnosed with COPD, but it is estimated that the true number living with the condition could be as high as 3.7 million. This Nursing in Practice survey looked at your experience of managing and treating patients suffering from COPD

The role of the primary care nurse is ever changing, with the range of clinical skills required becoming more varied. This short survey focused on your experience and knowledge of managing patients with chronic obstructive pulmonary
disease (COPD).

Smoking-related disease, particularly COPD, is becoming more common, but a large number of patients are not diagnosed with the condition until they reach their 50s. Further, while around 900,000 people have been diagnosed with COPD, it is estimated that the true number living with the disease could be as high as 3.7 million.1

It makes sense that COPD features regularly in the day-to-day graft of the primary care nurse. But just how much knowledge and experience is there among primary care nurses? The latest Nursing in Practice online survey, developed and sponsored by MSD, aimed to gauge the current level of knowledge of COPD and related conditions. And here are the results.

The COPD patient
According to the majority of nurse respondents, approximately 20-40% of all the patients they see have been diagnosed with a respiratory condition. In addition, of the total number of patients seen, 0-20% have a diagnosis of COPD. The average age of the patients they see with COPD is 55 years and over (Figure 1), and most answered that the proportion of time they spend with COPD patients is a quarter of their total workload.

[[Fig 1 COPD1]]

Training and education
The survey revealed almost 86% of respondents had undertaken some type of basic or accredited training in COPD; the most popular form of education was study days, or completion of a COPD/spirometry diploma. A total of 80% of respondents stated they would like to receive more training in this area, particularly spirometry and exacerbation management.

There are various ways in which nurses are able to keep themselves up-to-date with information about COPD. According to the survey data, 86% of our nurses do this by reading professional journals, and 85% by attending educational conferences/meetings (Table 1). In comparison, just 29% keep informed through membership of respiratory or nursing organisations.

[[Tab 1 COPD1]]

Disease management
Respondents were asked how confident they feel distinguishing between the symptoms of asthma and those of COPD. Fifty-two percent stated they feel confident, with 17% not very confident. There has clearly been progress made in the drive to search for and diagnose patients with COPD, as the majority of our nurses (80%) said that they initiate screening for patients who appear to be at risk of developing the disease.

A total of 78% of respondents run asthma, COPD or respiratory clinics themselves, and 60% review patients at every visit; in comparison, 20% review patients only when they request it.

COPD guidelines
This section asked respondents about the guidance used by nurses when treating their patients. A total of 82% of nurses said they use the National Institute for Health and Clinical Excellence (NICE) guidelines when treating patients with COPD and around half use British Thoracic Society (BTS) advice (see Figure 2 for the full list of answers).

[[Fig 2 COPD1]]

When assessing the severity of COPD, most respondents (92%) stated that they look primarily at FEV1 levels and frequency of exacerbations/exacerbation history. In answer to the question, "How does your care differ in line with changes in disease severity?", one specialist disease management nurse commented, "I see those [who are] severe/very severe twice yearly and consider whether to put them on the Gold Standards framework. I put them on an exacerbation care plan where they have steroids and antibiotics at home. They have combined steroid/LABAs and LAMAs as appropriate".

A practice nurse from Yorkshire wrote, "More support is needed as the disease progresses - I help them deal with exacerbations, optimise treatment and inhaler technique. Breathe Easy groups are good for some, and pulmonary rehabilitation is excellent for those who want it".

According to our nurses, the greatest driver in disease progression is an increase in exacerbations (56%), with decline in lung function the second most popular answer (26%). Some respondents added their own thoughts on the issue, and their answers included lack of exercise, nutritional status and poor compliance with medication.

When asked to pick a single word to sum up their feelings about caring for patients with COPD, most of our nurses chose "challenging", followed by "interesting" and "rewarding". Perhaps encouragingly, only 20% would use the word "frustrating". As a practice nurse from West Yorkshire commented, "I feel I can make more of a difference to the lives of patients with COPD (and asthma) than in any of the other areas of chronic disease management [in which] I work". For more responses to this question, see Box 1.

[[Box 1 COPD1]]

COPD treatment options
The majority of respondents stated they find out about new treatments for COPD from articles in healthcare publications (Table 2). Demonstrating the extended roles of primary care nurses in today's NHS, in answer to the question "Are you involved in the decision-making process for reviews of current and/or new treatment options in your GP surgery or health centre?", 66% answered in the affirmative. This decision is taken in collaboration with the GP in most cases.

[[Tab 2 COPD1]]

Patient understanding and support
It can be difficult for patients to fully understand their diagnosis, and it is common for them to experience some denial; for example, with regard to the effect that their smoking has had upon the progress of their disease.

We asked our nurses if they feel that patients have sufficient understanding of the chronic nature of their condition, to which 70% answered no. In contrast, 56% felt that, in general, patients do have a good understanding about what an exacerbation is. It was also revealed that 77% of nurses give their patients literature or details of support groups, but 47% felt that there is not enough literature currently available.

The most common types of literature given to patients by our nurses included British Lung Foundation leaflets, and details of local pulmonary rehabilitation. We also asked what the most popular support services were for patients, with pulmonary rehabilitation the most popular answer, followed by COPD support groups and patient meetings.

In terms of smoking cessation support, 90% of nurses stated that they offer information about local services to their patients. However, many also said that they themselves provide one-to-one smoking cessation advice/appointments, rather than signposting them to other services in the area.

National COPD strategy
In 2006, the Labour government initiated a National Strategy for COPD, and work has been ongoing since then to improve treatment and services tailored towards people living with the condition. Since the election, it has not been made clear when the final strategy publication will appear, as consultation closed on 6 April 2010, but work continues on implementing the plans set in place previously.

In light of this, we asked our nurses to tell us whether or not they think that the Strategy will have any effect on the provision of COPD services in the UK. Fifty-four percent said yes, they believe it will, although 41% were unsure.

In addition, there were varied opinions about the purpose and potential outcomes of the Strategy. A practice nurse from Hertfordshire felt that the effect would be "encouraging better standards of education and training in primary care to find COPD patients before they develop symptoms and to educate clinicians about new treatments."

However, there are clearly concerns about the current state of service provision for chronic respiratory conditions, as a practice nurse from the north-west of England commented: "Ideally, yes I would like to believe it will have an impact and I really hope it will. However, in the current climate of government spending reductions it may be unlikely. There is already inequality in health, particularly for patients with COPD; COPD is given significantly less funding than heart disease and yet hospital admissions for exacerbations cost the NHS millions. More funding is needed to provide adequate training for all nurses working in primary and hospital care if better management is to be achieved."

Most respondents were unsure about whether or not the Strategy will affect their role specifically, although many nurses were happy to comment on the issue. One practice nurse from Cumbria felt that possible changes would include "increased screening; possibly going out into the community for case management as not everyone can come in; and increased co-operation with the outlook team to prevent admissions."

Considering the breadth of knowledge primary and community nurses need to meet the planned and opportunistic needs of patients, this survey is very positive. There are some elements that need to be built upon, but it is clear nurses feel positive about being able to make a difference to the lives of patients with COPD. In the future, perhaps the National Strategy on COPD will influence care sufficiently for quality of life and prognosis in this group of patients to be significantly improved.

Your comments (terms and conditions apply):

"The nurse were not asked about the availability of specialist services in their areas - either for support directly to the patient/carers or for advice to themselves. This is interesting especially in light of the emphasis that both NICE guidance and the unpublished strategy make on the availability of multidisciplinary specialist care" - Sarah Cowdell, Kirklees

"The nurses were not asked about dealing with depression and anxiety in these patients or training for same. As these conditions are extremely prevalent in patients with COPD and can affect their progress this would be an interesting finding" - Sheila Hardy, Northampton