BMJ  2003;327:E5 (4 October), doi:10.1136/bmjusa.01020003 (published 5 September 2002)

BMJ USA: Letter

RAPID RESPONSES FROM BMJ.COM

This article originally appeared in BMJ USA

The paper by Jones et al provoked a spirited response on bmj.com. As of January 13, 11 e-letters had been posted in response to the paper, three of which are published below (in whole or in part).—Editor, BMJ USA

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Self management plans: Not a sticking plaster to be applied uniformly

Editor—The article by Jones et al suggesting that there is widespread dissatisfaction with the concept of self management plans is thought provoking. However, the sweeping conclusions are difficult to justify. "We found that many patients with mild to moderate asthma . . .," they say, although they used a sample of only 32 patients, 12 of whom were deliberately selected as being clearly noncompliant. I can certainly think of examples in which patients have been clearly helped by the provision of written self management plans. Perhaps, therefore, I should add balance to the debate by making the statement that many patients with mild to moderate asthma find written management plans invaluable. My personal series of cases is far greater than 32 patients!

Less frivolously, I think the important point to be made is that self management plans are not a sticking plaster to be applied uniformly to all patients. In the same way that some patients will get on best with a metered dose inhaler and some with a dry powder inhaler, so there are patients who will appreciate and use a self management plan, whilst there are those who will not use it or who will actively dislike it. The challenge is to recognize which patients are which and to respond accordingly. More helpful research would quantify how many patients do and don't find plans helpful; it would also characterize how we can spot those who are likely to respond. I hope the authors will proceed to such studies in the future.

Royal Hallamshire Hospital, Sheffield, UK rod.lawson{at}csuh.nhs.uk

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We need to recognize the fundamental validity of the patient's experience

Editor—The patients [in the study by Jones et al] were guiding their own self management based on the very salient feedback of the response of their own asthma to their own behaviour. We should all recognize this in interacting with our patients in the acute care setting. They are often in front of us specifically because their own algorithms broke down or they encountered a situation for which it was not prepared.

If we help them figure out when, how, and why their system went astray, we can help them improve their knowledge of their disease and its treatment. We need to be nonjudgmental enablers for this process. Perhaps we should manage these patients in focus groups, where they can help (or harm) each other. This is what happens, for better or worse, over the Internet.

As a clinician, I have been reminded countless times that a physician who ignores his patient's observations in favor of his medical learning is a peril to the patient. I was taught this as a junior resident by a young woman in a contraception clinic who asked me if her tampons could make her sick. I asked her what she meant. She told me that she had tried a new tampon and had gotten a rash and fever and felt like she was going to die. I told her that I'd never heard of anything like that, but if she thought her new tampons made her sick, she should go back to the old ones. Three months later, toxic shock syndrome was described in the literature. By luck, I had stumbled on the proper response to such a situation. Recognizing the fundamental validity of the patient's experience and using that in the therapeutic alliance is the cornerstone of guided self management.

Wellstar Physicians' Group, Marietta, Georgia, USA James.Smeltzer{at}wellstar.org

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A wider concept of self management is needed

Editor—All concerned with improving standards of asthma care will be interested in the fascinating qualitative data reported by Jones et al on the unenthusiastic attitudes of patients and health professionals alike to guided self management plans for asthma. These findings may help to explain the disappointingly poor usage of this intervention, which has been shown to improve outcomes of asthma care in combination with regular practitioner review.¹ Recent surveys have shown that contrary to popular perception, there remains a high level of asthma mortality, and that we are failing to meet the goals of asthma management specified in our guidelines.

At first sight, the results of the study by Jones et al may dishearten those seeking to improve outcomes by propagating the message of self management, with both patients and professionals apparently unwilling to endorse the concept. A closer reading, however, allows other interpretations. The patients and professionals in the focus groups clearly equated guided self management with the provision of pre-printed, standardized self management plans, and felt that these documents had a very limited role to play for them. However, the comments of many of the patients reveal that they were, in fact, practicing a form of self management by avoiding triggers and by altering their medication in response to changes in their condition.

These actions are similar to those recommended in plans given by professionals. But unfortunately, in the absence of professional involvement, they are unguided—determined rather by what the individual patient "saw fit."

It is becoming apparent that many patients with asthma do not want to fit into the structures that we have evolved for delivering asthma care;² many do not want to attend for regular evaluation, do not want to monitor their peak flow regularly, and (consciously or otherwise) would rather tolerate symptoms of asthma. These findings indicate the need for us to be more imaginative and patient centered in our delivery of care.

In regards to self management plans, this may mean that we should be guiding and assisting our patients to allow them to do more effectively what it seems they want to do—to monitor their asthma in a way appropriate to them, to change their treatment when their clinical condition changes, and to use scarce health service resources responsibly and appropriately. What really matters is that patients have the necessary information, preferably in a retrievable medium, to allow them to act appropriately to changes in their asthma and to know when to call for help.

This negotiation and empowerment process may be somewhat time consuming at the onset, and, it seems, will require a change in the mind-set of health professionals. In the longer term, however, by introducing greater professional guidance and involvement in what patients are going to do anyway, it may achieve better outcomes and so be both clinically effective and cost-effective. The paper by Jones et al illustrates the current gulf between what patients think they want and what health professionals think they need; a wider conception by both of what constitutes a guided asthma self management plan may be a step towards bridging that gulf.

Minchinhampton Surgery, Stroud, Gloucestershire, UK drmthomas{at}oakridge.sol.co.uk

References

1. Gibson PG, Coughlan J, Wilson AJ, et al. Self management education and regular practitioner review for adults with asthma. (Cochrane review) In: Cochrane Library (issue 2). Oxford: Update software, 2000
2. Price D, Wolfe S. Delivery of asthma care: patients' use of and views on healthcare services, as determined from a national interview survey. Asthma J 2000;5:141-144

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