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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
Self management plans: Not a sticking plaster to be applied uniformly
EDITOR 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.
We need to recognize the fundamental validity of the patient's
experience
EDITOR 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.
A wider concept of self management is needed
EDITOR 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 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 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.
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!
Royal Hallamshire Hospital, Sheffield, UK
rod.lawson{at}csuh.nhs.uk
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.
Wellstar Physicians' Group, Marietta, Georgia, USA
James.Smeltzer{at}wellstar.org
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.
determined rather by what the
individual patient "saw fit."
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.
Minchinhampton Surgery, Stroud, Gloucestershire, UK
drmthomas{at}oakridge.sol.co.uk
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).
In:
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.
© BMJ 2002