Qualitative study of views of health professionals and patients on guided self management plans for asthma
BMJ 2000; 321 doi: https://doi.org/10.1136/bmj.321.7275.1507 (Published 16 December 2000) Cite this as: BMJ 2000;321:1507All rapid responses
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The authors conclude that “neither health professionals nor patients
were enthusiastic about guided self management plans”, they are
“ambivalent about their usefulness or relevance” and “most professionals
opposed their use”.
I have two serious concerns about the conclusions reached. First, I
am concerned about the vignettes used to “stimulate comment…”, and second,
I am concerned about the participants’ lack of experience with asthma
plans. The vignettes depict varying levels of understanding and
acceptance of the asthma diagnosis; there is NO mention of asthma plans in
terms of their access or use. Further, the authors do not describe any
link between these vignettes and an appraisal of the utility, relevance
and/or satisfaction with asthma plans.
As for the subjects selected in this study, the authors describe
dismal understanding or use of plans by both the professional and patient
participants. Specifically, “health professionals and patients were aware
of guided self management plans, but general practitioners and nurses made
little use of them and their experience was limited to the plans given out
by the hospitals or, in the case of some nurses, by drug companies.
Although all patients agreed that guided self management plans may be of
use to other people with asthma, only one was currently using a plan (1 of
32) and only five claimed to have done so in the past” yet “most (patient)
participants claimed they would try plans if offered”.
Specifically, with regard to nurse participants, their qualitative
expressions selected for publication demonstrated a very shallow
understanding of the processes needed to develop capable care partners
particularly with patients who have a chronic illness. For a patient to
develop competency, necessary (but not sufficient) ingredients are
knowledge and experience. Yet, these nurses gave “just a few pointers”, or
“two or three instructions” but “only to patients who had accepted and
understood their condition and were using drugs correctly” (obviously the
more competent patient who is less likely to need to refer to an asthma
plan). Yet, these nurses interpreted asthma plans as inappropriate for
both patients newly diagnosed and patients who tended to not seek regular
check-ups! Clearly, these are the patients who have little knowledge and
experience and would be highly likely to refer to a written asthma plan
containing information about symptoms to monitor, triggers to avoid, when
and with what to self-treat, and when to contact a health care provider.
The author’s general remarks about physician participants centered
around a lack of belief that many patients had capacity for self
management AND for some participants, it was inappropriate for the doctor
to try strategies to encourage compliance since this was a nurse delegated
task. Opposite from the perceptions of the nurses, some physicians
expressed the belief that asthma plans encouraged dependency on the
physician! One physician is quoted as saying “Every patient is different
and needs different advice. And only educated patients can deal with the
information they are given anyway. Some of my patients have shown me
these plans, and I’ve told them to put them in the bin”.
The development of an asthma action plan is preceded by an actual
diagnosis of asthma and then education about symptoms, triggers,
medications, and when/how to contact the physician. All of this takes a
significant amount of time and energy and our current practice of 10-20
minute clinic appointments makes this very difficult to operationalize.
Last August, we conducted one focus group of parents who managed asthma on
behalf of their young child. These parents represented a range of
severity and duration of asthma experiences. As a nurse manager, I made
the assumption that those parents who were very experienced would not need
a plan because it would be “in their head”. Much to my surprise, all of
the participants said they knew exactly where their child’s asthma plan
was located. Further, all of them admitted to using the plan every time
the child’s symptoms flared (since all of the children’s symptoms flared
intermittently). The BMJ study does not dissuade me that the National
Heart, Lung, Blood Institute standard that asthma management plans are
highly useful. I believe that asthma plans are essential in developing
competent care givers/patients, particularly in persons whose symptoms are
intermittent or where there is limited experience with the condition
(those who are newly diagnosed). These persons (intermittent symptoms
and/or new diagnosis) are the persons more likely to be treated by Family
Practice physicians and Pediatricians, thus the need to invest the time
and energy in developing competency of patients and care givers through
the use of asthma management plans.
Competing interests: No competing interests
The emerging challenge for health policy makers is to maintain the
quality of life and functional capacity of those with a chronic illness,
within economic constraints and despite system barriers. The organisation
and principles of primary care appear ideally suited to adopting self
management approaches in the care of people with chronic diseases. The
study by Jones et al is important in raising several issues in relation to
self management in primary care. Their conclusions however must be viewed
within the context of the chosen intervention and limitations of study
design.
They point out that an ongoing partnership needs to be formed with
patients, but they then trial a guided self management approach that is
clinician developed. This approach has little ownership by either the
practitioners implementing the program, or the recipients of the program.
Inherent to the success of these plans is the understanding that it is
designed using a partnership approach that is fundamental to any self
management process.
Similarly, concepts such as 'compliance' do not reflect patient
centred medicine or a partnership approach, but rather a directed,
traditional medical model approach. Compliance implies the extent to which
a patient follows medications and recommendations2. Non adherence should
not be regarded as a defiant behaviour, but rather a person's conscious
and often reasoned decision not to follow a prescriptive regimen or change
a behaviour.
In addition to the limitations inherent with this particular self
management plan, the selected study design restricts the generalisability
of the findings. In particular the finding 'guided self management plans
for adults with mild to moderate asthma are unlikely to be accepted or
sustained in primary care' needs to interpreted cautiously. The finding
particularly conflicts with some of the values of primary care which are
highly conducive to a self management approach.
Thoonen and van Weel 3 report that ownership of guidelines is
essential to guaranteeing implementation. This is true not only for GPs
and nurses, but also for patients. Criticism should be perhaps aimed at
the fact that the self management intervention was a written guide that
was not owned by any of those working together. Certainly some patients do
not want to self manage, but everyone should be given the opportunity if
that is what they wish.
The belief that health providers can choose who will benefit is not
substantiated by the literature. Approaches such as the Transtheoretical
model could of great benefit to GPs and other health care professionals as
it underscores the necessity to tailor programs to the actual needs of
patients through discussion with them to achieve the best outcome
possible.4
What is ultimately necessary is not for the imposition of well
intentioned externally designed plans, but rather the acquisition of
skills and knowledge by providers and consumers that is supported by a
self management culture that integrates with existing practice.
1. Jones A, Pill R, Adams S. Qualitative study of views of health
professionals and patients on guided self management plans for asthma.
BMJ 2000; 321: 1507-1510
2. Leickly FE, Wade SL, Crain E, Kruszon-Moran D, Wright EC, Evans R.
Self-reported adherence, management behaviour and barriers to care after
an emergency department visit by inner city children with asthma.
Pediatrics 1998; 101: 5
3. Thoonen B, Van Weel C. Self management in asthma care. BMJ 2000; 321:
1482-1483
4. Cassidy CA. Using the transtheoretical model to facilitate behaviour
change in patients with chronic illness. J Am Ac Nrs Pract 1999; 11 (7):
281 - 285
Sally Roach, Linda Thoms, Pradeep Jayasuriya,. Royal Australian
College of General Practitioners, WA Research Unit. 17 Lemnos Street,
Shenton Park. Western Australia 6010. wagpres@racgp.org.au
Competing interests: No competing interests
Jones and colleagues report that general practitioners and asthma
nurses are ambivalent about the value of self guided management plans for
asthma(1). It is noteworthy that the nurses stressed the importance of
patient education and ongoing monitoring. The doctors also stressed the
need for continuing education and dialogue. The doubts expressed by the
doctors and nurses appear to relate to the value of self management plans
that instruct the patients to adjust to their medication according to Peak
Expiratory Flows and/or symptoms. This begs the question as to whether
guided self management plans confer any benefit over intensive education
and regular review.
Gibson and his colleagues examined this question in a systematic
review(2). The combination of education, self management and regular
review was compared with usual care in 22 studies. Self management was
associated with a reduction in hospitalisations, unscheduled visits to the
doctor, days off work and nocturnal asthma. It is not clear however, from
these studies, whether the benefit was due to intensive education and
regular follow-up as opposed to the self management plans. This question
can be addressed by studies where both groups have regular follow-up and
ongoing education and where the only difference between the two groups is
the use of a guided self management plan. The few studies that have done
this have failed to demonstrate any additional benefit from self
management plans(3-6).
Ayres et al randomised 120 patients to dose adjustments made by a
physician or to a self management plan(3). Both groups were seen at 6
weekly intervals. At the end of six months there was no difference between
the groups in symptoms or lung function. The GRASSIC study randomised 569
patients to conventional monitoring or self monitoring with a peak flow
meter(4). The latter group was given guidelines on adjusting medicines
according to their peak flow. All patients were reviewed at 3 monthly
intervals. At one year there was no difference between the groups in lung
function, medication use or hospital admissions. The views reported by
Jones and his coworkers(1) are supported by the published evidence. There
may be selected patients who benefit from guided self management plans but
for the most part it may be more productive to focus on regular follow-up
and repeated education.
Peter Black
1. Jones A, Pill R, Adams S. Qualitative study of views of health
professionals and patients on guided self management plans for asthma. BMJ
2000; 321; 1507-1510.
2. Gibson PG, Coughlan J, Wilson AJ, Abramson M, Bauman A, Hensley MJ,
Walters EH. Self-management and regular practitioner review for adults
with asthma. The Cochrane Library. 2000: Volume 3. Update Software,
Oxford.
3. Ayres JG, Campbell LM, Follows RMA. A controlled assessment of an
asthma self-management plan involving a budesonide dose regime. Eur Respir
J 1996; 9; 886-892.
4. Osman LM, Abdalla MI, Beattie JA et al. Reducing hospital admission
through computer supported education for asthma patients. Grampian Study
of Integrated Care (GRASSIC). BMJ 1994; 308: 568-71.
5. Jones KP, Mullee MA, Middleton M, Chapman E, Holgate ST. Peak flow
based self management: a randomised controlled study in general practice.
British Thoracic Society Research Committee. Thorax 1995; 50: 851-857.
6. van Essen-Zandvliet E,. Lans C, Denteneer A, van Stel H, Colland V. Can
asthma exacerbations in children be reduced by using prodromal signs in a
self management plan? (abstract). Am J Respir Crit Care Med 1999; 159:
A757.
Competing interests: No competing interests
Jones et al describe attitudes to guided self management plans in asthma care (1).
What constitutes a self management plan? This debate concludes that complex, pre-determined, structured documents fail to find favour with either clinicians or people with asthma. Has the management of asthma become too formidable? Can we make it simpler?
Asthma varies over time and in severity in the individual; its presentation and course vary greatly from patient to patient. And, therefore, so should its management algorithm and therapy. Effective interventions are necessary; the patient's involvement is essential.
Self management plans will contribute to better asthma control provided they are simple, sensible, practical and achievable. They should be agreed to be so by clinician and user. Safety and effectiveness should not be forgotten.
Dr John Haughney
Alison Lea Medical Centre
Calderwood
East Kilbride G74 3BE
haughney@gpiag-asthma.org
1. Jones A, Pill R, Adams S. Qualitative study of views of health professionals and patients on guided self management plans for asthma. BMJ 2000;321:1507-10
Competing interests: No competing interests
Dear Editor
We applaud the prominence given to self management in asthma
(BMJ 2000;321:1507-10 and BMJ 2000;321:11482-3) but are concerned that the
work of Jones and colleagues is open to misinterpretation. He and his
colleagues conclude from "exploratory" work with focus groups that
'attempts to introduce self guided management plans for asthma in primary
care are unlikely to be successful' - a conclusion unsupported by
evidence.
As Thoonen's editorial points out, patients are managing their own
care but without health care professional's help, a finding supported by
recent interviews undertaken by the National Asthma Campaign (NAC) which
revealed significant asthma morbidity and only 6% of patients recalling
any kind of written advice on how to take asthma treatment. , It is
striking that Australian work has shown greater primary care use of self-
management plans.
What the research of Jones and his colleagues tells us is the size of
the problem involved in encouraging some asthma nurses and primary care
doctors to take on the challenge. But in the light of the evidence, we
should not be daunted by that task. We need to empower, rather than
simply seeking to educate, patients. We need to overcome the belief that
self-management plans are complex (it is unclear from the paper what
complexity of self-management was portrayed to the study participants).
And additional barriers - that self management is not appropriate for most
patients and the belief that education alone is the key to success - are
also not supported by evidence.
The 'Be in Control' initiative being launched by the NAC on January
30th 2001 is designed to make self management easier for busy health care
professionals; and should meet the plea from doctors and asthma nurses in
the study who feel that advice should be simple and patient focused rather
than simply generic.
As far as patients are concerned, we see nothing new in this study,
and important omissions. Responses about denial and non-compliance are
already well known, with some of this knowledge coming from previous work
from Jones, Pill and Adams. But we also know from the NAC telephone
helpline and other surveys that those with asthma dislike the uncertainty
associated with the condition. How they are helped to address that
provides an important route to gaining acceptance for proactive self
management. Each patient requires an approach which recognises their own
particular circumstance. Not everybody needs a detailed personal asthma
action plan, but everybody does need to know what to do in the event of
deteriorating control of their asthma.
Yours sincerely
Martyn Partridge
Consultant Chest Physician
Whipps Cross Hospital
Greta Barnes
Director
National Asthma and Respiratory Training Centre
David Price
GPIAG
Professor of Primary Care Medicine
Jack Barnes
Director of Research
National Asthma Campaign
1. Price DB, Wolfe S. Patient's use and views on the service
provided. Asthma J 2000;5:141-4.
2. Strachan D P. Defining unmet need. Asthma J 2000;5:137-40
3. Beilby J, Wakefield M, Ruffin R. Reported use of asthma management
plans in South Australia. Med J Aust 1997; 166: 298-301.
4. Gibson PG, Coughlan J, Wilson AJ, Abramson M, Bauman A, Hensley MJ
et al. Self.management education and regular practitioner review for
adults with asthma Cochrane Database Syst Rev 2000;3:CD001117.
5. Gibson PG, Coughlan J, Wilson AJ, Hensley MJ, Abramson M, Bauman
A, Walters EH. Limited (information only) patient education programs for
adults with asthma (Cochrane Review). In: The Cochrane Library, Issue 3,
2000. Oxford: Update Software.
Competing interests: No competing interests
We are concerned about various methodological flaws in the study
reported by Jones and colleagues (BMJ2000; 321:1507-10). He and his
colleagues concluded from work with focus groups that neither health
professionals nor patients were enthusiastic about guided self-management
plans. We suggest that aspects of the methodology adopted by Jones and
colleagues may have biased the outcome of their study.
Focus groups, or group interviews, have been carried out when doing
exploratory studies and undoubtedly have their advantages. However,
research has indicated that these may not be the most efficient way of
gathering data when the subject area is complex or participants hold many
different, opposing and interrelated attitudes towards the subject.
Stasser and colleagues (1,2) found that during group discussions,
information that is not held by at least a couple of group members is less
likely to be brought up in the discussion. This suggests that
participants in the Jones study who may have had positive attitudes
towards self-management of asthma care would not have voiced their views
if the majority group were airing negative attitudes. The use of focus
groups, therefore, discourages expression of alternative views.
The varied locations (schools, surgeries, pubs and the local
community hospital) used for group meetings is also of concern. Oppenheim
(3)looks at exploratory interviews and advises "a comfortable, unhurried
and relaxed setting for a private, confidential talk; anything that might
upset or disturb respondents or make them feel pressed or intimidated
should be avoided" (p69). Examples of inappropriate places to conduct
interviews include a pub! The appropriateness of holding group
discussions on guided self-management plans for asthma with asthma
patients, nurses or doctors is dubious. Additionally, participant
responses may well have been influenced by the location in which the group
interview was held.
The vignettes used by Jones and colleagues appear to be based on the
transcripts collected by the same authors in an earlier paper (4) which
categorise patients as 'deniers', 'accepters' and 'pragmatists'.
However, all three vignettes seem negatively biased against the patient or
at least biased against asthma management. For the 'accepter' vignette
(case2), instead of saying that Sue was upset, they could have said "she
was relieved when diagnosed" as shown in their previous study that found
some patients "who had been suffering symptoms for some time expressed
relief" (p195). In addition to this, instead of "I don't need an asthma
clinic" a more positive alternative taken from the previous study could
have been; "I don't need the doctor as long as the medication is working.
I'd let him know if there was a problem"(p197). We suggest that the
apparent bias may have triggered off attitudes in the doctors and nurses
towards the typical "non compliant" patient rather than self-management
plans per se. In turn, the wording of the vignettes may have resulted in
putting the patients on the defensive (an 'us' and' them' situation)
rather than extracting attitudes towards self-management plans.
If the aim of the study was as the title suggests looking at attitudes
towards guided self management plans, then why was there no mention of
guided self management plans in the vignettes?
Previous authors (5) have suggested that it is helpful for vignettes
to end with a sentence looking at the way matters are likely to develop in
the future i.e. prognosis. This may have been a useful addition to the
vignettes used by Jones et al., particularly for the professionals who are
likely to have hypothesised their own opinions as to each 'patent's'
prognosis - these opinions may have differed widely and may have
influenced their feedback.
Finally, Jones and colleagues reported that participants were given
an additional explanation of guided self-management plans consistent with
the British Thoracic Society guidelines. Details of this explanation were
not provided although feedback from one participating doctor indicates
that they were perceived as complex. The complexity of information on
self-management plans may well have influenced the attitudes of
participants towards their utility.
In conclusion, the conclusions of this study seem to be based on
flawed methodology which may not, therefore, accurately reflect the views
of patients and professionals towards guided self management plans for
asthma.
Jennifer Cleland, Clinical Lecturer
(jen.cleland@abdn.ac.uk)
Mandy Moffat, Doctoral Student
(m.moffat@abdn.ac.uk)
Both Department of General Practice and Primary Care, University of
Aberdeen, Foresterhill Health Centre, Westburn Road, Aberdeen, AB25 2AY
References:
1 Stasser G, Titus W. Pooling of unshared information in group
decision making: Biased information sampling during discussion. Journal of
Personality and Social Psychology 1985;48:1467-1478.
2 Stasser G, Taylor LA, Hanna C. Information sampling in structured
and unstructured discussions of three- and six-person groups. Journal of
Personality and Social Psychology 1989;57:67-78
3 Oppenheim AN. Questionnaire Design, Interviewing and Attitude
Measurement, (new edition). London: Pinter Publishers,1996.
4 Adams S, Pill R, Jones A. Medication, chronic illness and
identity: The perspective of people with asthma. Social Science and
Medicine 1997;45:189-201
5 Miller T, Velleman R, Rigby K, Orford J, Tod A, Copello A, Bennett
G. The use of vignette in the analysis of interview data: Relatives of
people with drug problems. Doing Qualitative Analysis in Psychology Hayes
N (ed)1997: 201-225
Competing interests: No competing interests
Editor
All concerned with improving standards of asthma care will be interested
in the fascinating qualitative data on the unenthusiastic attitudes of
patients and health professionals alike to guided self management plans
for asthma reported by Jones et al 1. 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 2. Recent surveys have shown that contrary to popular
conception, there remains a high level of avoidable morbidity in asthmatic
patients in the UK3 and in Europe4, and that we are failing to met the
goals of asthma management specified in our guidelines.
At first sight, the results of this study may dishearten those seeking to
improve outcomes by propagating the message of self-management, with
patients and professionals alike 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 standardised self-management
plans, provided either by a local hospital unit or by a pharmaceutical
company, and felt that these documents had a very limited role to play for
them. However, the cited 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 in themselves 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 care5; many
do not want to attend for regular review of their asthma and 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 the instance of 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 the patient has 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 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 and cost
effective. This paper 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 it.
Mike Thomas
General Practitioner
The Surgery, Minchinhampton, Stroud, Gloucs GL6 9JF
drmthomas@oakridge.sol.co.uk
1. Jones A, Pill R, Adams S. Qualitative study of views of health
professionals and patients on guided self management plans for asthma. BMJ
2000;321:1507-10.
2. Gibson PG, Coughlan J, Wilson AJ, Abramson M, Bauman A, Hensley
MJ, and et al. Self-management education and regular practitioner review
for adults with asthma. (Cochrane review) In: Cochrane Library (Issue 2).
2000. Oxford: Update Software.
3. Smith NM. The 'Needs of People with Asthma' survey and initial
presentation of the data. Asthma J 2000;5:133-6.
4. Rabe KF, Vermeire PA, Soriano JB, Maier WC. Clinical management
of asthma in 1999: the Asthma Insights and Reality in Europe (AIRE) study.
Eur Respir J 2000;16:802-7.
5. 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;5:141-4.
Competing interests: No competing interests
The experience of asthma for patients varies greatly in severity and
over time. Most patients with mild or moderate asthma will neither want
nor need a formal self-management plan (SMP). Some patients may benefit
from a SMP but perhaps only some of the time. The mismatch reported by
Jones et al (ref 1) may reflect the uncertainty about which patients need
and will use a SMP.
We have been conducting a randomised controlled trial in 545
asthmatic patients who use steroid inhalers. These patients were a
subgroup of the 1209 patients in our general practice aged over 16 who
were recorded as suffering from asthma. A control group was mailed an
invitation for the standard treatment based around an annual review (i.e.
a review by GP or nurse of symptoms, signs, management and written self-
management plans). A second group was sent the invitation for the standard
treatment plus a blank standardised written self management plan that
could be completed at their annual review. A third group was posted the
invitation plus a partially completed personalised self-management plan.
Twelve months after the mailshots the patients’ medical records are being
checked for measures of process and outcome and the patients are being
questioned to assess their understanding of self-management, and their
current symptoms. Data collection and analysis continue but there are
some clear impressions. Most GPs and practice nurses can provide SMPs.
Over two thirds of patients discussed a SMP with a GP or practice nurse in
the 12 months of the study. Many of these patients (roughly 20%) report
they use and benefit from guided SMP.
The challenge for primary care is that GPs and Practice Nurses are
willing and able to offer an effective intervention like a written SMP
when needed. The challenge for research and development is to inform
professionals and patients when and how an intervention is likely to be
effective. We need to know how to engage each patient in the effective
management of the problems that are important for that patient.
Terry Kemple
General Practitioner
Horfield Health Centre,
Lockleaze Road,
Bristol BS7 9RR
TK@elpmek.demon.co.uk
Ref 1
Qualitative study of views of health professionals and patients on guided
self management plans for asthma,
Alan Jones, Roisin Pill, and Stephanie Adams,
BMJ 2000; 321: 1507-1510
Competing interests: No competing interests
We have the concensus that noone is helped by the current conception
of guided self-management plans: Our friend in radiology is convinced, as
are some of the nurses, that the patients are too stupid to manage it.
The nurses know they cannot get the patients to follow orders now, much
less complicated ones, and the physicians aren't sure that externally
imposed inflexible plans are very practical.
I agree with the physicians, but the patients most of all. I think
the providers should get together with the patients, who are indeed
following self-management plans: "All the adults felt that they were
already self managing competently and were behaving responsibly by not
bothering the doctor or nurse unless necessary. For them self management
meant taking drugs as they saw fit, avoiding "triggers" that brought on
asthma, and requesting medical assistance only when this self care failed
(box). Emphasis was placed on "knowing your own body best," what drugs
worked for them, and therefore what to "reorder.""
The patients were guiding their own self-management based on the very
salient feedback of the response of their own asthma to their own
behavior. 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 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 with better self-management algorithms. We need to be non-
judgmental enablers for this process. Perhaps we should manage them in
focus groups, where they can help (and harm) each other. This is what
happens for better or worse over the net.
I have not read these asthma protocols. Perhaps they are like the
old TR-4 service manual I remember so well: useless if you know what you
are doing and incomprehensible if you don't. Perhaps we should conclude
that external, imposed, [mis]guided self-management [sic] plans don't
work. I personally think this fact is a very favorable reflection on the
human spirit, and would have it no other way.
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 she had tried a
new tampon and gotten a rash, 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.
Competing interests: No competing interests
Guided self management palns for asthma
Editor - Jones, Pill and Adams (1) in their qualitative study on
asthma self-management plans challenge us by their description of patient
and health practitioner treatment preferences that diverge widely from
internationally promulgated asthma treatment guidelines. However,
clinician
acceptance of the attitudes reported in this study risks introducing
standards of care which are known to be suboptimal.
In asthma, Level 1 evidence does exist to support the efficacy of a
comprehensive strategy of asthma education, self-management and ongoing
review in improving objective medical outcomes (2). Why did this study by
Jones' and colleagues reach such different conclusions with regard to
patient and health practitioner attitudes? A recent global question has
been what are the barriers to the adoption of evidence-based guidelines by
health practitioners(3)? It has been established that the beliefs of
edical practitioners surrounding medical information are critical to
subsequent clinical actions (4) and that local ownership of guidelines is
critical to implementation. The study sample of patients, nurses and
doctors was recruited from one region of Wales where health practitioners
did not
perceive asthma management plans as useful. How involved have these health
professionals been in any regional development of asthma management plans?
In the absence of involvement, patients may simply be reflecting the views
of their doctors and clinical nurses regarding the utility of asthma
management plans.
With regard to patient perspectives, it would be critical to understand
how Jones, Pill and Adams derived their categorisation of patients as
compliant or non-compliant. Was it self-definition, health practitioner-
defined, or a
combination? Methodological rigour in qualitative research requires
transparency of the research process in dissemination of results,
notwithstanding the limitations imposed by publication vehicles (5).
Given the significance of this issue a better understanding of these
choices and
their influence on data analysis and interpretation would enable readers
to better assess the results of this pilot study.
For too long patients have been the "silent voice" in the construction of
treatment guidelines and asthma is not an exception. Jones, Pill and
Adams should be commended for listening to patients as well as clinicians.
The
issues raised by this study mandate a more comprehensive qualitative study
of the attitudes of individual asthma patients to established treatment
guidelines in order to ensure that valuable principles are not dismissed
on
pilot evidence.
Jo Douglass
Head,
Asthma and Allergy Unit, Department of Allergy, Asthma
and Clinical Immunology, The Alfred Hospital & Monash University,
Prahran, Vic. 3181. Australia.
Rosalie Aroni
Lecturer,
School of Public Health, La Trobe University,
Bundoora, Vic 3083. Australia.
Dianne Goeman
Research Officer,
Department of Allergy, Asthma and Clinical
Immunology, The Alfred Hospital & Monash University, Prahran, Vic.
3181.
Australia.
Susan Sawyer
Associate Professor,
Centre for Adolescent Health, Royal
Children's Hospital and University of Melbourne. Parkville Vic, 3052.
Australia
Michael Abramson
Associate Professor,
Department of Epidemiology and
Preventive Medicine, Monash University Medical School, Prahran Vic. 3181.
Australia.
Kay Stewart
Senior Lecturer,
Victorian College of Pharmacy, Monash
University, Parkville. Vic. 3052. Australia.
Frank Thien
Consultant Physician,
Department of Allergy, Asthma and
Clinical Immunology, Alfred Hospital and Monash University, Prahran Vic
3181
Australia.
References:
1) Jones A, Pill R, Adams S. Qualitative study of views of health
professionals and patients on guided self management plans for asthma.
BMJ 2000; 321: 1507-1510.
2) Gibson PG, Coughlan J, Wilson AJ, Abramson M, Bauman A, Hensley
MJ et al. Self-management, education and regular practitioner review for
adults with asthma. Cochrane Database Syst Rev 2000; 3: CD 001117.
3) Cabana MD, Rand CS, Powe NR, Wu AW, Wilson MH, Abboud PA. Why
don't physicians follow clinical practice guidelines? A framework for
improvement. JAMA 1999; 282: 1458-1465.
4) Graham I. I believe therefore I practise. Lancet 1996; 347: 4-
5.
5) Mays N, Pope C. Assessing quality in qualitative research. BMJ
2000; 320: 50-52.
Competing interests: No competing interests