Guest author: Janet Wale member of the Cochrane Consumer Network
People are still struggling with evidence or modern medicine clinicians, patients, health consumers, carers and the public alike. Part of this is because we always thought medicine was based on quality research, or evidence. It is not only that. For evidence to be used most effectively in healthcare systems researchers, clinicians and the existing or potential patients and carers have to communicate and resonate with each other – to share knowledge and responsibilities both in developing the evidence and in individual decision making. On the broader population level, this may include consultation but is best achieved by developing partnerships.
The Cochrane Collaboration develops a large number of the published systematic reviews of best evidence on healthcare interventions, available electronically on The Cochrane Library. Systematic reviews are integral to the collation of evidence to inform clinical practice guidelines. They are also an integral part of health technology assessments, where the cost-effectiveness of healthcare interventions is determined for a particular health system.
With the availability of the Internet we are able to readily share information. We are also acutely aware of disadvantage for many of the Worlds populations. What this has meant is pooled efforts. Now we have not only the World Health Organization but also The Cochrane Collaboration, Guidelines International Network, and Health Technology Assessment International. What is common among these organizations? They involve the users of health care, including patients, consumers and carers. The latter three organizations have a formal consumer/patient and citizen group that informs their work. In this way we work to make the evidence relevant, accessible and being used. We all have to be discerning whatever knowledge we are given and apply it to ourselves.
The National Library of Medicine (NLM) not only launched a redesigned PubMed interface, but also another service (though still in beta): Pillbox beta for “rapid identification and reliable information.
The web address is http://pillbox.nlm.nih.gov/
Pillbox was developed to aid in the identification of unknown solid dosage pharmaceuticals. The system combines high-resolution images of tablets and capsules with FDA-approved appearance information (imprint, shape, color, size and scoring) to enable users to visually search for and identify an unknown solid dosage pharmaceutical. (see About-section).
This system is designed for use by emergency physicians, first responders, other health care providers, Poison Control Center staff, and concerned citizens. David Hale from the National Library of Medicine (NLM), argued in his short presentation at the Medicine 2.0 congress that better medication identification can potentially prevent 6000 to 8000 deaths each year due to adverse events. David explained that while FDA data might be available in the public domain, there is a need to make the information more usable.
The interface is very clear and intuitive. You can choose the visual identification/exploration or the HTML screen reader compatible option to search.
Below I did a quick search with the latter option. (To show you the search options) I searched for 9mm white pills with the imprint West-ward 254, that can be broken in two and I get one result: a hydrocortisone pill (HC). That is neat. Only the imprint would have done, I guess, but without imprint there remain a lot of white pills to choose from.
The visual identification option is even easier to use.
As of September 2009 only 779 of the 5,693 records have images, but as the project of the NLM and FDA proceeds in making large-scale photos of prescription medications, verified by manufacturers, more images will be available.
Once a solid dosage form has been identified, additional information is provided, including brand/generic name, ingredients, and the National Drug File identification number. Links are provided to NLM drug information resources, such as FDA-approved label information (DailyMed) and the Drug Information Portal, which searches all NLM drug information resources (About).
The pills are sometimes difficult to discern. Perhaps because of my screen, and/or because white pills (on a black background) all look alike. The Figure left is 50% of the original (enlarged) picture: it is barely recognizable. So, at least in case of white pills, you do depend on correctly identified imprints.
Do you ever use Wikipedia? I do and so do many other people. It is for free, easy to use, and covers many subjects.
But do you ever use Wikipedia to look up scientific or medical information? Probably everyone does so once in a while. Dave Munger(Researchblogging) concluded a discussion on Twitter as follows:
“Wikipedia’s information quality is better than any encyclopedia, online or off. And, yes, it’s also easy to use”.
Wikipedia is an admirable initiative. It is a large online collaborative, multilingual encyclopedia written by contributors around the world.
But the key question is whether you can rely on Wikipedia as the sole source for medical, scientific or even popular information.
Well, you simply can’t and here are a few examples/findings to substantiate this point.
RANKING AND USE
E-patients
When you search for diabetes in Google (EN), Wikipedia’s entry about diabetes ranks second, below the American Diabetes Association Home Page. A recent study published in the J Am Med Inform Assoc [1] confirms what you would expect: that the English Wikipediais a prominent source of online healthinformation. Wikipedia ranked among the first ten results in more than 70%of search engines and health-keywords tested, and outranked other sources in case of rare disease-related keywords. Wikipedia’s articles were viewed more frequently than the corresponding MedlinePlus Topic pages. This corroborates another study that can be downloaded from the internet here [10]. This study by Envision Solutions, LLC, licensed under the Creative Commons License, concluded that the exposure of Internet user’s to health-related user-generated media (UGM) is significant, Wikipedia being the most reference resource on Google and Yahoo.
According to the Pew Internet & American Life Project*, 10 million US adults search online for information on health each day [1]. Most (66%) begin their research on a search engine like Yahoo or Google. In addition, Americans are saying that the information they find on the Internet is having an impact. According to Pew, “53% of health seekers report that their most recent health information session [influenced] how they take care of themselves or care for someone else.” In addition, 56% say the information they find online has boosted their confidence in their healthcare decision-making abilities.
In 2000, 46% of American adults had access to the internet, 5% of U.S. households had broadband connections, and 25% of American adults looked online for health information. Now, 74% of American adults go online, 57% of American households have broadband connections, and 61% of adults look online for health information.
Thus a lot of people look online for health care questions and are more inclined to use highly ranked sources.
This is not unique for Health topics but is a general phenomenon, i.e. see this mini-study performed by a curious individual: 96.6% of Wikipedia Pages Rank in Google’s Top 10 [12]. The extreme high traffic to Wikipedia due to search referrals has even been been denounced by SEO-people (see here) [13]: if you type “holiday” Wikipedia provides little value when ranking in the top 10: everybody knows what a holiday is
www.wolfescape.com/Humour/Patients.htm
Medical students use it too.
A nightmare for most educators in the curriculum is that students rely on UGM or Web 2.0 sites as a source of medical information. Just walk along medical students as they work behind their computers and take a quick glance at the pages they are consulting. These webpages often belong to the above category.
‘Many students said I know I shouldn’t but….’ and then qualified that they used Wikipedia first because it was easy to understand, they felt it was reasonably reliable, and accessible. One student used it to search directly from her phone when on placement..
50% of the doctors use it!
But these are only medical students. Practicing doctors won’t use Wikipedia to solve their clinical questions, because they know where to find reliable medical information.
A recent qualitative study published in Int J Med Inform [2]examined the “Web 2.0″ use by 35 junior physicians in the UK. Diaries and interviews encompassing 177 days of internet use or 444 search incidents, analyzed via thematic analysis. Although concepts are loosely defined (Web 2.0, internet and UMG are not properly defined, i.e. Google is seen as a web 2.0 tool (!) [see Annemarie's critical review [16] the results clearly show that 89% of these young physicians use at least one “Web 2.0 tool” (including Google!) in their medical practice, with 80% (28/35) reporting the use of wikis. The visit of wiki’s is largely accounted for by visits to Wikipedia: this was the second most commonly visited site, used in 26% (115/44) of cases and by 70% (25/35) of all physicians.Notably, only one respondent made regular contribution to a medical wiki site.
The main motivation for using the Internet for information seeking was the accessibility and ease of use over other tools (like textbooks), the uptodateness, the broad coverage and the extras such as interactive immages. On the other hand most clinicians realized that there was a limitation in the quality or usefulness of information found. It is reassuring that most doctors used UGM like Wikipedia for background or open questions, to fulfill the need for more in depth knowledge on a subject, or to find information for patients, not for immediate solving of clinical questions.
Apparently some doctors also heavily rely on Wikipedia that they refer to Wikipedia articles in publications (see the Int. J Cardiol. PubMed [3] abstract below)!!
WHY WIKIPEDIA IS NOT (YET) A TRUSTWORTHY AND HIGH QUALITY HEALTH SITE
Whether the common use of Wikipedia by e-patient, medical students and doctors is disadvantageous depends on the quality and the trustworthiness of the Wikipedia articles, and that is in its turn dependent on who writes the articles.
Basically, the strength of Wikipedia is it weakness: anyone can write anything on any subject, and anyone can edit it, anonymously.
Negative aspects include its coverage (choice of subjects but also the depth of coverage), the “overlinking”, the sometimes frustating interactions between authors and editors, regularly leading to (often polite) “revision wars“, but above all the lack of ‘expert’ authors or peer review. This may result in incomplete, wrong or distorted information.
Positive aspects are its accessibility, currency, availability in many languages, and the collective “authorship” (which is an admirable concept).
Differences in the interests and attention of Wikipedia’s editors mean that some areas, in the traditional sciences, for example, are better covered than others. (…) Overall, we found that the degree to which Wikipedia is lacking depends heavily on one’s perspective. Even in the least covered areas, because of its sheer size, Wikipedia does well, but since a collection that is meant to represent general knowledge is likely to be judged by the areas in which it is weakest, it is important to identify these areas and determine why they are not more fully elaborated. It cannot be a coincidence that two areas that are particularly lacking on Wikipedia—law and medicine—are also the purview of licensed experts.
It is not unexpected though that Wikipedia’s topical coverage is driven by the interests of its users.
The actual coverage of medical subjects may vary greatly. In one study [5], abstract-format, 2007) Wikipedia entries were screened for the most commonly performed inpatient surgical procedures in the U.S. Of the 39 procedures, 35 were indexed on Wikipedia. 85.7% of these articles were deemed appropriate for patients. All 35 articles presented accurate content, although only 62.9% (n=22) werefree of critical omissions. Risks of the procedures were significantly underreported. There was a correlation between an entry’s quality and how often it was edited.
This study suggests that Wikipedia may be a useful point of engagement for consumers looking for drug information, but that it should be supplementary to, rather than the sole source of, drug information. This is due, in part, to our findings that Wikipedia has a more narrow scope, is less complete, and has more errors of omission versus the comparator database. Consumers relying on incomplete entries for drug information risk being ill-informed with respect to important safety features such as adverse drug events, contraindications, drug interactions, and use in pregnancy.
These errors of omission may prove to be a substantial and largely hidden danger associated with exclusive use of
user-edited drug information sources.
Alternatively, user-edited sites may serve as an effective means of disseminating drug information and are promising as a means of more actively involving consumers in their own care. However, health professionals should not use user-edited sites as authoritative sources in their clinical practice, nor should they recommend them to patients without knowing the limitations and providing sufficient additional information and counsel…
Not Evidence Based
German researches found [7], not surprisingly, that Wikipedia (as well as two major German statutory health insurances):
“…failed to meet relevant criteria, and key information such as the presentation of probabilities of success on patient-relevant outcomes, probabilities of unwanted effects, and unbiased risk communication was missing. On average items related to the objectives of interventions, the natural course of disease and treatment options were only rated as “partially fulfilled”. (..) In addition, the Wikipedia information tended to achieve lower comprehensibility. In conclusion(..) Wikipedia (..) does not meet important criteria of evidence-based patient and consumer information though…”
Wrong, misleading, inaccurate
All above studies point at the incompleteness of Wikipedia. Even more serious is the fact that some of the Wikipedia addings are wrong or misleading. Sometimes on purpose. The 15 biggest wikipedia blunders [23] include the death announcements of Ted Kennedy (when he was still alive), Robert Byrd and others. Almost hilarious are the real time Wikipedia revisions after the presumed death of Kennedy and the death of Ken Lay (suicide, murde, heart attack? [24).
In the field of medicine, several drug companies have been caught altering Wikipedia entries. The first drug company messing with Wikipedia was AstraZeneca. References claiming that Seroquel allegedly made teenagers “more likely to think about harming or killing themselves” were deleted by a user of a computer registered to the drug company [25], according to Times [26]. Employees of Abbott Laboratories have also been altering entries to Wikipedia to “eliminate information questioning the safety of its top-selling drugs.”(See WSJ-blog [27] , brandweeknrx.com [28], and recently Kevin MD[29])
These are “straightforward” examples of fraudulent material. But sometimes the Wikipedia articles are more subtly colored by positive or negative bias.
Take for instance the English entry on Evidence Based Medicine (in fact the reason why I started this post). Totally open-minded I checked the entry, which was automatically generated in one of my posts by Zemanta. First I was surprised by the definition of EBM:
Evidence-based medicine (EBM) aims to apply the best available evidence gained from the scientific method to medical decision making. It seeks to assess the quality of evidence of the risks and benefits of treatments (including lack of treatment).
instead of the usually cited Sacket-definition (this is only cited at the end of the paper):
“the practice of evidence based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research”
In short, the whole article lacks cohesion: the definitions of EBM are not correct, there is too much emphasis on not directly relevant information (4 ways to grade the evidence and 3 statistical measures), the limitations are overemphasized (cf. chapter 7 with 6 in the Figure below) and put out of perspective.
Apparently this has also been noted by Wikipedia, because there is a notice on the Evidence Based Medicine Page saying:
This article has been nominated to be checked for its neutrality. Discussion of this nomination can be found on the talk page. (May 2009)
Now why in earth would some advocate of CAM write the Wikipedia EBM-entry? I can think of 4 (not mutually exclusive) reasons:
When you’re an EBM-nonbeliever or opponent this is THE chance to misinform readers about EBM (to the advantage of CAM).
The author was invited to write this entry.
No EBM-specialist or epidemiologist is willing to write the entry, or to write for Wikipedia in general (perhaps because they find Wikipedia lacks trustworthiness?)
EBM specialists/epidemiologists are not “allowed”/hindered to make major amendments to the text, let alone rewrite it.
According to Mr Naturopath point 2 is THE reason he wrote this article. Now the next question is “exactly by whom was he invited?” But the TALK-page reveals that Mr Naturapath makes it a tough job for other, better qualified writers, to edit the page (point 4). To see how difficult it is for someone to re-edit a page, please see the TALK-page. In fact, one look at this page discourages me from ever trying to make some amendments to any Wikpedia text.
SOLUTIONS?
Changes to Wikipedia’s organization
Wikipedia has long grasped that its Achilles heel is the free editability (see for instance this interview with Wikipedia’s founder [30]). Therefore, “WikiProjects” was initiated to help coordinate and organize the writing and editing of articles on a certain topic, as well as “Citizendium” which is an English-languagewiki-based freeencyclopedia project aimed to improve the Wikipedia model by providing a “reliable” encyclopedia. “It hopes to achieve this by requiring all contributors to use their real names, by strictly moderating the project for unprofessional behavior, by providing what it calls “gentle expert oversight” of everyday contributors, and also through its “approved articles,” which have undergone a form of peer-review by credentialed topic experts and are closed to real-time editing.”
Starting this fall Wikipedia will launch an optional feature called “WikiTrust” will color code every word of the encyclopedia based on the reliability of its author and the length of time it has persisted on the page: Text from questionable sources starts out with a bright orange background, while text from trusted authors gets a lighter shade.
The Wikipedia EBM article is within the scope of these two projects, and this is good news.However, Wikipedia still clings to the idea that: “Everyone is welcome to join in this endeavor (regardless of medical qualifications!).” In my opinion, it would be better if Wikipedia gave precedence to experts instead of hobbyists/ people from another field, because the former can be expected to know what they are talking about. It is quite off-putting for experts to contribute. See this shout-out:
Who are these so-called experts who will qualify material? From what I’ve seen so far, being an academic expert in a particular field hardly protects one from edit wars–Julie and 172 are two primary examples of this. Meanwhile, the only qualification I have seen so far is that they have a B.A. Gimme a friggin’ break! (and before I get accused of academic elitism, I make it known that I dropped out of college and spend an inordinate amount of time at work correcting the BS from the BAs, MAs, and PhDs).
While anyone can still edit entries, the site is testing pages that require changes to be approved by an experienced Wikipedia editor before they show up, the so called Flagged protection and patrolled revisions. (see Wikimedia) This proposal is only for articles that are currently under normal mechanisms of protection (i.e. the Obama-article cannot be edited by a newcomer).
Although this seems logic, it is questionable whether “experienced” editors are per definition better qualified than newcomers. A recent interesting analysis of the Augmented Social Cognition group [31], (cited in the Guardian [32]) shows a slowdown in growth of Wikipedia activity, with the activity slightly declining in all classes of editors except for the highest-frequency class of editors (1000+ edits). Here is an increase in their monthly edits.
In addition the study shows growing resistance from the Wikipedia community to new content. The total percentage of reverted edits increased steadily over the years, but more interestingly, low-frequency or occasional editors experienced a visibly greater resistance compared to high-frequency editors . Together this points at a growing resistance from the Wikipedia community to new content, especially when the edits come from occasional editors.
This is more or less in line with an earlier finding [9] showing that Wikipedia members feel more comfortable expressing themselves on the net than off-line and scored lower on agreeableness and openness compared to non-Wikipedians, a finding that was interpreted as consistent with the possibility that contributing to Wikipedia serves mainly egocentric motives.
A less noncommital approach is the demand to “Publish in Wikipedia or perish”, as described in Nature News[9]. “Anyone submitting to a section of the journal RNA Biology will, in the future, be required to also submit a Wikipedia page that summarizes the work. The journal will then peer review the page before publishing it in Wikipedia.” The project is described in detail here [10] and the wiki can be viewed here
Wiki’s for experts.
One possible solution is that scientist and medica experts contribute to wiki’s other than the Wikipedia. One such wiki is the wiki-surgery [5]. PubDrug, RxWiki , WikiProteins [11] and Gene Wiki [12] are other examples. In general, scientists are more inclined to contribute to these specialists wiki’s, that have oversight and formal contributions by fellow practitioners (this is also true for the RNA-wiki)
A medical Wikipedia
Yet another solution is a medical wikipedia, such as Ganfyd or Medpedia . Ganfyd is written by medical professionals. To qualify to edit or contribute to the main content of Medpedia approved editors must have an M.D., D.O., or Ph.D. in a biomedical field. Others, however, may contribute by writing in suggestions for changes to the site using the “Make a suggestion” link at the top of each page. Suggestions are reviewed by approved editors. Whether these medical wikipedias will succeed will depend on the input of experts and their popularity: to what extent will they be consulted by people with health questions?
I would like to end with a quote from Berci during twitterview (link in Wikipedia):
@Berci : @diariomedico And as Wikipedians say, Wikipedia is the best source to start with in your research, but should never be the last one. #DM1 9 months ago
REFERENCES
Scientific Articles
Laurent, M., & Vickers, T. (2009). Seeking Health Information Online: Does Wikipedia Matter? Journal of the American Medical Informatics Association, 16 (4), 471-479 DOI: 10.1197/jamia.M3059
Hughes, B., Joshi, I., Lemonde, H., & Wareham, J. (2009). Junior physician’s use of Web 2.0 for information seeking and medical education: A qualitative study International Journal of Medical Informatics, 78 (10), 645-655 DOI: 10.1016/j.ijmedinf.2009.04.008
Lee, C., Teo, C., & Low, A. (2009). Fulminant dengue myocarditis masquerading as acute myocardial infarction International Journal of Cardiology, 136 (3) DOI: 10.1016/j.ijcard.2008.05.023
Halavais, A., & Lackaff, D. (2008). An Analysis of Topical Coverage of Wikipedia Journal of Computer-Mediated Communication, 13 (2), 429-440 DOI: 10.1111/j.1083-6101.2008.00403.x
Devgan, L., Powe, N., Blakey, B., & Makary, M. (2007). Wiki-Surgery? Internal validity of Wikipedia as a medical and surgical reference Journal of the American College of Surgeons, 205 (3) DOI: 10.1016/j.jamcollsurg.2007.06.190
Clauson, K., Polen, H., Boulos, M., & Dzenowagis, J. (2008). Scope, Completeness, and Accuracy of Drug Information in Wikipedia Annals of Pharmacotherapy, 42 (12), 1814-1821 DOI: 10.1345/aph.1L474 (free full text)
Mühlhauser I, & Oser F (2008). [Does WIKIPEDIA provide evidence-based health care information? A content analysis] Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen, 102 (7), 441-8 PMID: 19209572
Amichai–Hamburger, Y., Lamdan, N., Madiel, R., & Hayat, T. (2008). Personality Characteristics of Wikipedia Members CyberPsychology & Behavior, 11 (6), 679-681 DOI: 10.1089/cpb.2007.0225
Daub, J., Gardner, P., Tate, J., Ramskold, D., Manske, M., Scott, W., Weinberg, Z., Griffiths-Jones, S., & Bateman, A. (2008). The RNA WikiProject: Community annotation of RNA families RNA, 14 (12), 2462-2464 DOI: 10.1261/rna.1200508
Mons, B., Ashburner, M., Chichester, C., van Mulligen, E., Weeber, M., den Dunnen, J., van Ommen, G., Musen, M., Cockerill, M., Hermjakob, H., Mons, A., Packer, A., Pacheco, R., Lewis, S., Berkeley, A., Melton, W., Barris, N., Wales, J., Meijssen, G., Moeller, E., Roes, P., Borner, K., & Bairoch, A. (2008). Calling on a million minds for community annotation in WikiProteins Genome Biology, 9 (5) DOI: 10.1186/gb-2008-9-5-r89
Huss, J., Orozco, C., Goodale, J., Wu, C., Batalov, S., Vickers, T., Valafar, F., & Su, A. (2008). A Gene Wiki for Community Annotation of Gene Function PLoS Biology, 6 (7) DOI: 10.1371/journal.pbio.0060175
Other Publications, blogposts (numbers in text need to be adapted)
This week the Grand Round will be hosted by Invisible Illness Week, a blog dedicated to the National Invisible Ilness Week, which runs September 14 -20, 2009. The purpose:
National Invisible Chronic Illness Awareness Week (..) is a worldwide effort to bring together people who live with invisible chronic illness and those who love them. Organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the impact of living with a chronic illness that is not visually apparent.
The theme of the Grand Round is, not very surprisingly: Invisible chronic Illness.
I won’t write about this professionally -being a librarian-, but I will speak from my own experience.
As many of you know, I’ve the chronic illness Addison’s Disease. Not that I feel ill. It doesn’t affect me, really… Not anymore.. I think.
But many people with Addison’s disease suffer silently from this disease. And like many other diseases this disease is seldomly understood by partners, colleagues, friends ….. and doctors.
Before I explain more about Addison’s disease, first let me say that almost every disease is “invisible” to others. People can never fully understand what an illness means to someone suffering from it.
Cortisol, Image via Wikipedia
Patients with Addison’s disease make no or too small amounts of cortisol, a hormone made by the adrenal cortex. Cortisol has a bad reputation as the stress hormone among many people. It doesn’t deserve this reputation as this hormone is vital to life. Corticosteroids are involved in a wide range of physiologic systems such as stress response, immune response and regulation of inflammation, carbohydrate metabolism, protein catabolism, blood electrolyte levels, and behavior (Wikipedia)
Here, I will confine myself to Addison’s disease. It is a very good example of an invisible yet serious disease.
There are 3 forms of Addison: primary (defect in the adrenal cortex itself, often also leading to a defect in aldosteron production), secondary Addison (by a defect in the hypophysis or hypothalamus) and iatrogenic Addison (caused by overtreatment with corticosteroids)
Here some reasons why the illness, although “invisible”, can have great impact on your live.
1. Diagnosis.
well-ville.com/images/adrenalQA2.jpg
Diagnosis is often a challenge, especially in patients with primary Addison, most of whom look healthy because of their pigmented skin. Nowadays, the main cause of primary Addison’s disease is immune destruction of the adrenal cortex. This has often a slow onset and in 50% of the patients the diagnosis takes more than 2, sometimes even more than 10 years [1]. 38% of the patients even experience vague complaints, that can later be attributed to Addison, during 11->30 years before diagnosis [1].
Before the diagnosis is made, people with Addison’s Disease often feel extremely tired and miserable. Even when the disease fully manifests itself the symptoms are largely vague and aspecific. The most common symptoms are fatigue, dizziness, muscle weakness, weight loss, difficulty in standing up, vomiting, anxiety, diarrhea, headache, sweating, changes in mood and personality, and joint and muscle pains. Often the symptoms aren’t taken seriously (enough) or the illness is mistaken for anorexia or depression.
My secondary Addison was the consequence of an injury to the pituitary gland as result of heavy blood loss during complicated childbirth (see previous post). The week between the cause and the diagnosis of the disease, was the most terrible week of my life. I felt awful, weak, (well I lost >3 liters of blood to start with), couldn’t give breast milk (no prolactin), and I disgusted food so much, you can’t imagine. I couldn’t get anything down my throat, only the look of it made me vomit. And I felt so bad not being able to care for the baby, but I just couldn’t. I couldn’t even stand for more then a few minutes, couldn’t walk. And then there was unstoppable diarrhea, dizzyness, and speaking with double tongue. And practically no one took it seriously, not the gynaecologists, not the nurses, not the paediatricians, nor my friends or family.
But this was only one week. How would it have been if it durated 5 or 10 years?
2. Grieve and adaptation.
Once the disease is diagnosed you have to learn to live with a body that has let you down (grieve) and you have to learn to become confident again(adapt). You also have to find a new balance. I’ve lost a few hormones overnight (ACTH, cortisol, thyroid hormone, growth hormone, prolactin, gonadotrope hormones) and believe me, it took me a few years to feel reasonable normal again. It is quite surprising how badly I was informed. Very little information about the risk of an Addisonian crises, the dosing of cortisol under various conditions.
It was also confronting how little people wanted to know about the disease or what I had been through. Visitors after the birth wanted me to be euphoric and didn’t want me to go into any detail of what had happened. They cut me short by saying: “But you have a lovely baby”. Somebody cried that she didn’t want to hear it. So I stopped trying to speak about it.
I took no sick leave, immediately went back to work. My boss – a nephrologist, never asked after my health, not once.
As I said it took a few years before my “come-back”. I didn’t feel myself. It was as if I couldn’t think, as if my head was filled with cottonwool. Afterwards I think the main reason for improval was the reduction of the cortisol from 30 mg to 12.5 per day and the use of DHEAs plus that I regained confidence in myself.
3. Comorbidity
With cortisol I lost some other hormones which are also essential. Patients with primary Addison often miss aldosteron as well, which makes them more liable for an Addisonian crisis. Primary Addisonians may also have other immune diseases, like autoimmune thyroid disease, gonadal failure, type 1 diabetes and vitiligo.
4. Addisonian crisis
An addisonian crisis is an emergency situation, with possible fatal outcome, associated mainly with an acute deficiency of the glucocorticoid cortisol. This occurs in (extremely) stressful situations. Some Addisonpatients are more prone to it than others. You can -and should – take precautions, like wearing alert bracelets or necklaces, so that emergency personnel can identify adrenal insufficiency and provide stress doses of steroids in the event of trauma, surgery, or hospitalization.
Some Addisonians fear these crises so much that they dear not walk or run alone. Many Addison patients don’t go to a country far away, some don’t even pass the border (and you know the Netherlands aren’t that big).
5. Addison’s disease can be treated but not cured.
Addison patients are treated with corticosteroids like hydrocortisone and are substituted with other hormones that they may lack. Without treatment, the disease is lethal, with treatment the disease is not cured. I do feel all right now, but many of my fellow patients don’t. I think that the following excerpt from a Seminar of Wiebke Arlt and Bruno Allolio about adrenal insufficiency [2] makes this very clear.
Despite adequate glucocorticoid and mineralocorticoid replacement, health-related quality of life is greatly impaired in patients with primary and secondary adrenal insufficiency. Predominant complaints are fatigue, lack of energy, depression, and anxiety. In addition, affected women frequently complain about impaired libido. In a survey of 91 individuals, 50% of patients with primary adrenal insufficiency considered themselves unfit to work and 30% needed household help. In another survey of 88 individuals the number of patients who received disablility pensions was two to three times higher than in the general population. The adverse effect of chronic adrenal insufficiency on health-related quality of life is comparable to that of congestive heart failure. However, fine-tuning of glucocorticoid replacement leaves only a narrow margin for improvement, and changes in timing or dose do not result in improved wellbeing.
References
Zelissen PM. Addison patients in the Netherlands: medical report of the survey. The Hague: Dutch Addison Society, 1994.
Martin Bril was a well known Dutch writer, poet and columnist – and the man who invented “skirt day”.
He loved live -and love- in all it’s simplicity. He needed few words to describe the essence of things or as he would say: “The surface is deep enough”. But you know, it is looking at one drop of water and understanding the ocean. …
I always thought he had colon cancer, but it was esophageal cancer. That’s the trouble with Dutch:
esophagus = slokdarm,
jejunum, ileum = dunne darm
colon = dikke darm.
Notice they all have “darm” in them. Mostly colon cancer is called “darmkanker” (or “dikke darmkanker”), and because esophagus is called slokdarm, slokdarmkanker is mistaken for darmkanker, which is quite another disease with other prospects.
Stupid, journalists keep on using the wrong name. Not that it matters a lot now, but still.
More “incorrect” was the fact that I first saw the announcement of his death in a newsletter from dokterdokter.nl (below). It is an online medical information site for patients. I have been getting their newsletter for years now, because -for one thing or another- I’m unsuccessful in unsubscribing to it. Dokterdokter.nl is typically a website that gives very general information, mostly leading to the advise “to check your doctor first”.
What struck me (besides the fact that I was taken by his death) was that his death was presented as Medical News, next to an enormous “oral sex” headline and the headline “what happens if you die?”. As if it was a tabloid. The message (he died the day before):
Martin Bril finally succumbed to esophageal cancer at the age of 49. Esophageal cancer has a bad prognosis. Why?
(if you click: )
“Martin Bril, the well known author …, died of esophageal cancer at the age of 49. He was a real hedonist. Cigarettes and alcohol were part of his life. Many years he had fought cancer, but Wednesday April 22 he lost his fight. Few people really completely recover from this illness.”
(….) Generally, the disease has to do with your lifestyle. In Western Countries, smoking and excessive alcohol consumption are the most important causes of esophageal cancer.
Whereas most medical sites (including the Dutch Cancer Society, from which all the information was taken) just neutrally say that the cause is unknown, but that alcohol and smoking are known risk factors for esophageal cancer, -and even more so in combination- dokterdokter puts a direct link between Martin’s lifestyle and his death, as if it was his own fault. Maybe it was, but at that moment I didn’t want to know. It didn’t matter. I found it disrespectful, tasteless. I’m quite interested in health and medicine and mechanisms, but the reason of his death -at this moment- was less important than his death itself.
Bij Nederlanders hoef ik Martin Bril nauwelijks te introduceren. Dat ik hier over hem schrijf heeft vooral te maken met het stukje dat ik in de nieuwsbrief van Dokterdokter.nl las. In feite was het dit bericht, waardoor ik wist dat hij gestorven was. Voor mij een schok. Ik lees de Volkskrant niet meer, dus het was mij ontgaan dat het slecht met hem ging. Het is ook een jonge vent, jonger dan ik, met twee dochters, net als ik. Zo kom het altijd nog een beetje dichterbij. En hij kon mooi schrijven. “De oppervlakte was diep genoeg,” zo zei hij, maar het was bij hem net of je in een druppel de hele oceaan kon zien.
Voor het eerst zag ik trouwens dat hij slokdarmkanker had. De meeste journalisten spraken van darmdanker, waar men in de regel toch dikkedarmkanker mee bedoelt. Slokdarmkanker is een heel andere ziekte, met een heel andere prognose. Vreemd dat het meerendeel van de journalisten het toch steeds over darmkanker heeft
Maar dit terzijde. Ik vond het vreemd, dat het bericht als een “nieuwsaankondiging” stond naast de kop “orale sex” en “hoe voelt het als je dood gaat”. Misschien had Martin er wel om kunnen lachen, maar ik vond het bizar. Het verhaal zelf vond ik ook nogal ongepast.
De ziekte slokdarmkanker werd schrijver Martin Bril op zijn 49e fataal. Het is een ziekte met slechte vooruitzichten, mede omdat het vaak laat wordt ontdekt.
“Schrijver Martin Bril, bekend van boeken als De kleine keizer en Arbeidsvitaminen en van zijn columns in de Volkskrant, is op 49-jarige leeftijd aan slokdarmkanker overleden. Hij was een echte levensgenieter, sigaretten en alcohol waren een vast onderdeel van zijn leven. Al vele jaren streed hij tegen kanker, maar woensdag 22 april was zijn strijd gestreden. Maar weinig mensen weten volledig te herstellen van deze ziekte.”De ziekte heeft meestal te maken met de leefstijl van mensen. Roken en overmatig alcoholgebruik zijn in Westerse landen de belangrijkste oorzaken voor het ontstaan van slokdarmkanker.
Andere bronnen -ook de KWF-brochure, waar dit stuk aan ontleend is, schrijven steevast dat de oorzaak niet bekend is, maar dat roken en alcohol (vooral in combinatie) de belangrijke risicofactoren zijn. Mogelijk is zijn leefwijze inderdaad de belangrijkste reden geweest dat hij slokdarmkanker heeft gekregen. Nou en? Is het nodig om dit zo op te schrijven? Een dag na zijn dood? Ik vond het nogal oneerbiedig. Misschien dacht men bij dokterdokter.nl dat het schrikeffect mensen zou weerhouden om veel te roken en te drinken, want “kijk, daar krijg je slokdarmkanker van!!” Behalve dat dokterdokter niet bepaald het juiste publiek (de “zelfkanters” en “hedonisten”) zal bereiken, zal zo’n actie sowieso weinig zoden aan de dijk zetten. Dan was Martin’s bijdrage aan de Stivoro campagne “stoppen met roken” (2002/2003) waarschijnlijk veel effectiever. Hij schreef een column voor ze en werkte mee aan een video.
“Samen met de rest van Nederland treurt STIVORO om het heengaan van een bijzonder mens en groot schrijver: Martin Bril
STIVORO heeft Martin leren kennen toen hij zich enthousiast inzette voor onze ‘Stoppen met roken’ campagne van 2002/2003. Hij was toen bereid zijn persoonlijkheid en zijn schrijftalent voor deze campagne in te zetten.
Wij zijn dankbaar dat we met hem hebben mogen samenwerken. We wensen zijn familie en andere dierbaren heel veel sterkte toe.
“We’ll be publishing a wide range of articles, from those that share anecdotes about why we need to improve the health care system, to examples of innovations and care that are working well, through to the policy recommendations that we need.”
Although I easily could give some anecdotal examples from the past about “failures or shortcomings” in Healthcare, I prefer to give some positive examples of how a web 2.0 approach can bring patients and doctors together. There are numerous examples of successful application of web 2.0 tools by patients to find and share information and to improve the management of their disease. There are also many healthcare people who use web 2.0 tools to write down their experiences (blogs, social media), to get their information (RSS) and to put information on the web (wiki’s) for patients or colleagues. There are hospitals that are actively engaged in social media and that facilitate patients to use these tools to gather information, but I’ve seldom seen a real web 2.0 based patient-doctor collaboration…. till recently…. close to home in Nijmegen at the Zorg 2.0 (Health 2.0) event, organized by Lucien Engelen (twitter: zorg20; and on linkedin). In fact, the whole meeting was a success with lots of interesting lectures (i.e. from Bertalan Mesko of Scienceroll and Maarten Lens Fitzgerald of Maarten’s Journey.) and workshops.
All podcasts of the Zorg 2.0 event can be seen here
Two presentations were given by two professors on patient centered care in the so called award winning initiative MijnZorgNet (MyCareNet): Bas Bloem and Jan Kremer.
I will discuss their two presentations in separate posts.
This post will summarize the presentation of Bas Bloem, neurologist from the UMC St Radboud Ziekenhuis Nijmegen and initiator of the Parkinson Center.
Bas Bloem began with his “take home message” (with which I couldn’t agree more):
Health 2.0 is not “the world of gadgets”, but a new way of thinking in healthcare:
the patient becomes centric, care becomes collaborative: the patient is not passive, he is “equal” to the healthcare provider. It isn’t “he asks, we provide”, but the patient definitively has a voice (and choice) in his own healthcare.
coherent and transparent healthcare.
expertise (few experts, but with very specialized knowledge).
He set up a program for Parkinson care delivery networks, first in the surroundings of Nijmegen and later throughout the Netherlands. Although his talk is about Parkinson, it can be seen as a model for all kinds of complex diseases.
Bas is an idealist. He believes most healtcare people choose their job to really help people. Doctors choose to care. Only the system doesn’t help them to realize this.
To change this, a paradigm shift is needed. Healthcare needs to be centered round the patient:
The patient has the right to see the best specialist -in a structured way; the assessment of the patient is “CENTRAL”, in an intramural setting, i.e. by a neurologist. In the present example, people from the first line can easily contact the specialists or plan an appointment in their agenda. In this way the patient is helped promptly and he notices the good cooperation between the two lines.
Daily healthcare is close to home, only performed by a handful of specialists (i.e. physiotherapists) specially trained to treat Parkinson patients. This is called the ParkinsonNet. Patients rather have someone with expertise who is within a 20 minutes distance, than a less experienced person round the corner.
There is optimal communication between the “two layers”.
The patient plays an active role.
How is this organized?
When the patient is referred to the neurologist, he first has to fill in a screening list and has to prioritize 5-10 health problems, which he/she would like to discuss when visiting the Day Center. So one patient may want to see a sexologist, a dietitian and a physiotherapist and an other a rehabilitation physician, gerontologist and a neurologist.
Doctors and patients sit round a table, each in the same position (no hierarchy).
Consumer reviews are shown (anonymously) on the Internet. This makes healthcare transparent. When scores are bad some action should be taken to improve it.
How is this achieved?
Selection of experts who get education (via e learning etc), on basis of geographic distribution. Patients have to travel a bit more, healthcare is canalized,
All healthcare workers work according a multidisciplinary guideline. Patients were active co-producers of the guideline.
Implementation (see above)
Yellowpages (paper and digital version) have been made of healtcare providers, enabling patients to choose.
Indicators are developed, patients are invited to give feedback and to grade the healthcare (providers). If someone performs bad, (gets the red card) he/she may ultimately be taken out of the network.
The experiment of patient empowerment in Parkinson’s Disease management has grown from very small (region Nijmegen) to almost national. The blank region (see Figure) is not included to be able to assess the effectiveness of this system compared to the traditional approach.
The next step is the creation of a virtual community. This is certainly important and not out of reach for the elderly. A transmural electronic health record is available (Parkinson dossier) both for the patient and the healthcare worker.
Within a week after the large SELECT (Selenium and Vitamin E Cancer Prevention) Trial was halted due to disappointing results (see previous posts: [1] and [2]), the negative results of yet another large vitamin trial were announced [7].
Again, no benefits were found from either vitamin C or E when it came to preventing prostate ànd other cancers.
Both trials are now prepublished in JAMA. The full text articles and the accompanying editorial are freely available [3, 4, 5].
In The Physicians’ Health Study II Randomized Controlled Trial (PHS II), researchers tested the impact of regular vitamin E and C supplements on cancer rates among 14,641 male physicians over 50: 7641 men from the PHS I study and 7000 new physicians.
The man were randomly assigned to receive vitamin E, vitamin C, or a placebo. Besides vitamin C or E, beta carotene and/or multivitamins were also tested, but beta carotene was terminated on schedule in 2003 and the multivitamin component is continuing at the recommendation of the data and safety monitoring committee.
Similar to the SELECT trial this RCT had a factorial (2×2) design with respect to the vitamins E and C [1]: randomization yielded 4 nearly equal-sized groups receiving:
400-IU synthetic {alpha}-tocopherol (vitamin E), every other day and placebo (similar to the SELECT trial)
500-mg synthetic ascorbic acid (vitamin C), daily and placebo
both active agents
both placebos.
Over 8 years, taking vitamin E had no impact at all on rates of either prostate cancer (the primary outcome for vitamin E), or cancer in general. Vitamin C had no significant effect on total cancer (primary outcome for vitamin C) and prostate cancer. Neither was there an effect of vitamin E and/or C on other site-specific cancers.
How can the negative results be explained in the light of the positive results of earlier trials?
The conditions may differ from the positive trials:
The earlier positive trials had less methodological rigor. These were either observational studies or prostate cancer was not their primary outcome (and may therefore be due to chance). (See previous post The best study design for dummies).
Clinical data suggest that the positive effect of vitamin E observed in earlier trials was limited to smokers and/or people with low basal levels of vitamin E, whereas animal models suggest that vitamin E is efficacious against high fat-promoted prostate cancer growth (20), but lacks chemopreventive effects (i.e. see [1,4] and references in [5], a preclinical study we published in 2006).
Indeed, there were very low levels of smoking in the PHS II study and the effect of the vitamins was mainly assessed on induction not on progression of prostate cancer.
Eight times higher vitamin E doses(400IE) have been used than in the ATCB study showing a benefit for vitamin E in decreasing prostate cancer risk! [1,4]
Other forms of vitamin E and selenium have been proposed to be more effective.
As Gann noted in the JAMA-editorial, the men in both recent studies were highly motivated and had good access to care. In SELECT, the majority of men were tested for PSA each year. Probably because of this intense surveillance, the mean PSA at diagnosis was low and prostate cancers were detected in an early, curable stage. Strikingly, there was only 1 death from prostate cancer in SELECT, whereas appr. 75-100 deaths were expected. There also were indications of a deficit in advanced prostate cancer in PHS II, although a much smaller one.
In other words (Gann): “how can an agent be shown to prevent serious, clinically significant prostate cancers when PSA testing may be rapidly removing those cancers from the population at risk before they progress?”
Similarly, in the SELECT trial there was no constraint on the use of other multivitamins and both studies put no restriction on the diet. Indeed the group of physicians who participated in the PHS II trial were healthier overall and ate a more nutritious diet. Therefore Dr Shao wondered “Do we really have a placebo group – people with zero exposure? None of these physicians had zero vitamin C and E” [7]. In the Netherlands we were not even able to perform a small phase II trial with certain nutrients for the simple reason that most people already took them.
What can we learn from these negative trials (the SELECT trial and this PHS II-trial)?
Previous positive results were probably due to chance. In the future a better preselection of compounds and doses in Phase 2 trials should determine which few interventions make it through the pipeline (Gann, Schroder).
Many other trials disprove the health benefits of high dose vitamins and some single vitamins may even increase risks for specific cancers, heart disease or mortality [9]. In addition vitamin C has recently been shown to interfere with cancer treatment [10].
The trials make it highly unlikely that vitamins prevent the development of prostate cancer (or other cancers) when given as a single nutrient intervention. Instead, as Dr Sasso puts it “At the end of the day this serves as a reminder that we should get back to basics: keeping your body weight in check, being physically active, not smoking and following a good diet.”
Single vitamins or high dose vitamins/antioxidants should not be advised to prevent prostate cancer (or any other cancer). Still it is very difficult to convince people not taking supplements.
Another issue is that all kind of pharmaceutical companies keep on pushing the sales of these “natural products”, selectively referring to positive results only. It is about time to regulate this.
Sources & other reading (click on grey)
Huge disappointment: Selenium and Vitamin E fail to Prevent Prostate Cancer.(post on this blog about the SELECT trial)
Vitamins E and C in the Prevention of Prostate and Total Cancer in Men: The Physicians’ Health Study II Randomized Controlled Trial. J. Michael Gaziano et al JAMA. 2008;0(2008):2008862-11.[free full text]
Effect of Selenium and Vitamin E on Risk of Prostate Cancer and Other Cancers: The Selenium and Vitamin E Cancer Prevention Trial. Scott M. Lippman, Eric A. Klein et al (SELECT)JAMA. 2008;0(2008):2008864-13 [free full text].
Combined lycopene and vitamin E treatment suppresses the growth of PC-346C human prostate cancer cells in nude mice. Limpens J, Schröder FH, et al. J Nutr. 2006 May;136(5):1287-93 [free full text].
News
“an initial, independent review of study data from the Selenium and Vitamin E Cancer Prevention Trial(SELECT), funded by the National Cancer Institute (NCI) and other institutes that comprise the National Institutes of Health shows that selenium and vitamin E supplements, taken either alone or together, did not prevent prostate cancer. The data also showed two concerning trends: a small but not statistically significant increase in the number of prostate cancer cases among the over 35,000 men age 50 and older in the trial taking only vitamin E and a small, but not statistically significant increase in the number of cases of adult onset diabetes in men taking only selenium. Because this is an early analysis of the data from the study, neither of these findings proves an increased risk from the supplements and both may be due to chance.”
SELECT is the second large-scale study of chemoprevention for prostate cancer. Chemoprevention or chemoprophylaxis refers to the administration of a medication to prevent disease. The SELECT trial aimed to determine whether dietary supplementation with selenium and/or vitamin E could reduce the risk of prostate cancer among healthy men. It is a randomized, prospective, double-blind study with a 2×2 factorial design, which means that the volunteering men received either one of the supplements, both supplements or no supplements (but placebo instead), without knowing which treatment they would receive.
The trial volunteers were randomly assigned to one the following treatments:
200 µg of selenium and 400 IU of vitamin E per day. (both supplements)
200 µg of selenium per day and placebo
400 IU of vitamin E per day and placebo
two different placebo’s (neither supplement)
(µg = micrograms, IU = International Units)
In an interview with CBS, one of the investigators Dr Katz, said he was highly disappointed and concerned, because he had high hopes for the trial. “I”m disappointed with the study. I’m very concerned about the results of the trial.
The question now is: Was there enough evidence to support such a large trial? Could this result have been foreseen? Would the trial have had different outcomes if other conditions had been chosen?
Quite coincidentally I commented to Sandsnurf blogpost referring to the SELECT trial, 1 week before the bad outcome was announced):
Indeed, in many RCT’s vitamin supplements didn’t have the beneficial effects that they were supposed to have. Already in the early nineties, adverse effects of beta-carotene (higher mortality in smokers) have been shown in several RCT’s. Still, because vitamin E had an expected positive effect on prostate cancer in one such trial, vitamin E is now being tested together with selenium (2X2) in a very large prostate cancer trial. Quite disturbingly, 8 times higher doses vitamin E are being used (400IE) compared to the original study. If the Lawson study is right, the outcome might be harmful. Worrying.
It might be argued that it is easy to criticize a study once the outcome is known. However, this critique is not new.
Already in 2002 a very good critique was written by MA Moyad in Urology entitled: Selenium and vitamin E supplements for prostate cancer: evidence or embellishment?
Here I will summarize the most important arguments against this particular trial (largely based on the Moyad paper)
The incidence, or rate of occurrence, of prostate cancer was not the primary focus or endpoint of the few randomized controlled trials studies on which the SELECT study was based.
A 2×2 design is inadequate for dose-response evaluations, in other words: before you start the trial, you have to be pretty sure about the optimal dose of each supplement and of the interactive effect of vitamin E and selenium in the particular doses used. The interaction between two agents might be synergistic or additive, also with respect to any negative (i.e. pro-oxidant) effect.
Eight times higher vitamin E doses(400IE) have been used than in the ATCB study showing a benefit for vitamin E in decreasing prostate cancer risk! This is remarkable, given the fact that high doses of anti-oxidants can be harmful. Indeed, a prospective study has shown, that vitamin E supplements in higher doses (> or =100 IU) are associated with a higher risk of aggressive or fatal prostate cancer in nonsmokers.
Other forms of vitamin E and selenium have been proposed to be more effective. For instance dietary vitamin E (gamma tocopherol and/or gamma tocotrienols) might be more effective in lowering prostate cancer risk than the chemically-derived vitamin E (dl-alpha tocopherol acetate) used in SELECT. Also the used selenomethionine might be less effective than organically-bound selenium.
Selenium and vitamin E supplements seem to provide a benefit only for those individuals who have lower baseline plasma levels of selenium or vitamin E.
There may be other compounds that may be more effective, like finasteride, lycopene, statins (or with respect to food: a healthy lifestyle)
Katz said. “I would have hoped this would have been the way to prevent cancer in this country.”
Isn’t it a little bit naive to expect such huge effects (25% less prostate cancers) just by taking 2 supplements, given the thoughts summarized above?
In the interview, shown in the CBS-interview LaPook concludes “This is a major disappointment, but it is also progress. Because it’s also important to know what does not prevent cancer.”
Well I wonder whether it is ethical ànd scientifically valid, to do such a costly experiment with 35.000 healthy volunteers, based on such little evidence. Do we have to test each single possibly effective food ingredient as a single intervention?
SOURCES:
Official publications and information
- EA Klein: http://www.ncbi.nlm.nih.gov/pubmed/12756490
- Lippman SM, J Natl Cancer Inst. 2005 Jan 19;97(2):94-102. Designing the Selenium and Vitamin E Cancer Prevention Trial (SELECT). (PubMed record)
- The results of the SELECT trial are published in JAMA: Effect of Selenium and Vitamin E on Risk of Prostate Cancer and Other Cancers: The Selenium and Vitamin E Cancer Prevention Trial. Scott M. Lippman, Eric A. Klein et alSELECT)JAMA. 2008;0(2008):2008864-13, published online December 9th 2008.
Here I will summarize one of the presentations in that opening session, i.e. the presentation by Pekka Mustonen, called:
Connecting patients to the best-evidence through technology: An effective solution or “the great seduction”?
Pekka essentially showed us what the Finnish have achieved with their Duodecim database.
Duodecim was started as a health portal for professionals only. It is a database (a decision support system) made by doctors for doctors. It contains Evidence Base (EBM) Guidelines with:
regularly updated recommendations
links to evidence, including guidelines and Cochrane Systematic Reviews
commentaries
Busy Clinicians don’t have the time to perform an extensive search to find the best available evidence each time they have a clinical question. Ideally, they only would have to carry out one search, taking not more than oneminute to find the right information.
This demand seems to be reasonably met by Duodecim.
Notably, Duodecim is not only very popular as a source for clinicians ànd nurses, the guidelines are also read and followed by them. Those familiar with healthcare know that this is the main obstacle: getting doctors and nurses to actually use the guidelines.
According to Pekka, patients are even more important than doctors to implement guidelines: Half of the patients don’t seem to follow their doctor’s advice. If the advice is to keep on inhaled steroids for long-term management for asthma, many patients won’t follow that advice, for instance. “When you reach patients, small changes can have large benefits”, he said.
However, although many patients rely on internet to find health information, formal health information sites face fierce competition on Internet. It is difficult for consumers to separate chaff from wheat:
Still, Duodecim has managed to make a website for the general public that is now as popular as the original physicians database is for doctors, the only difference being that doctors use the database continuously, whereas the general public just consults the database when they are confronted with a health problem.
The database contains 1000 EBM key articles, where the content is integrated with personal health records. The site looks rather straightforward, not glitzy nor flashy. Intentionally, in order to look like a serious and trustworthy professional health care site.
A survey revealed that Duodecim performed a lot better than Google in answering health care questions, and does lead to more people either deciding NOT to consult a physician (because they are reassured), or deciding to consult one (because the symptoms might be more serious than thought). Thus it can make a difference!
The results are communicated differently to patients compared to doctors. For instance, whether it is useful to wear stockings during long-haul flights to prevent deep venous thrombosis in patients that have either a low or a high risk for thrombosis is explained to the physician in terms of RR, ARR, RRR and NNT.
Patients see a table with red (high risk patients) and green columns (low risk patients). Conclusions will be translated as follows:
If 1000 patients with a low risk for DVT wear stockings on long-haul flights
9 will avoid it
1 will get it
1 out of 1000 (will get it)
990 use stocking in vain
If 1000 patients at high risk for DVT wear stockings on long-haul flights:
27 will avoid it
3 will get it
1 out of 333 (will get it)
970 use stocking in vain
This database will be integrated with permanent health records and virtual health checks. It is also linked to a tv program with the aim of changing the way of living. Online you can do a life expectancy test to see what age you would reach if you continue your life style as you do (compare “je echte leeftijd”, “your real age”[dutch]).
“What young people don’t realize”, Pekka said, is that most older people find that the best of life starts at the age of 60(?!) Thus, it doesn’t end at 30, as most youngsters think. But young people will only notice, when they reach old age in good health. To do this, they must change their habits already when young.
The Finnish database is for free for Finnish people.
Quite coincidentally (asking for a free usb-stick at the Wiley stand ) I found out that Wiley’s database EBM Guidelines links to the Duodecim platform (see below). Quite interesting to take a trial, I think.
(Although this presumably is only the professional part of Duodecim, thus not the patient oriented database.)
Regular breast exam, either by women theirselves (BSE, breast self exam) or a doctor or nurse, has been promoted for many years, because this would help to detect breast cancer earlier, and “when breast cancer is found earlier, it’s easier to treat and cure” . At least that is what most people believe and what has been advocated by organizations and Internet companies (i.e. selling special gloves) (see figure).
In a question-answer like way I try to cover the story.
1. What is the conclusion from the study? The authors conclude that regular breast examination (BE) does more harm than good and is therefore not recommended.
2. Which harm, which good? Breast examination didn’t lower mortality (not beneficial), whereas it led to more unnecessary biopsies (harm).
3. Why did they look at mortality only? They didn’t, they also scored the number and stage of cancers identified. However mortality (or really survival) is an outcome that matters most for patients. Suppose the screening finds more breast cancers, but early intervention does not lead to any cure, than the early recognition of the cancer is of no real value to the patient.
4. Why are more unnecessary biopsies considered as harm?
Biopsies are an invasive procedure and lead to unnecessary anxiety, that can have a long-lasting effect on psychological well-being. Extra tests to rule out that it is not cancer also cost a lot of money. Whether it is ‘worth it’ depends on whether -and to which extent- people’s lives are saved (or quality of life improved).
5. What kind of study is it? It is a systematic review (of controlled clinical trials) made by the Cochrane Collaboration (see glossary). Generally these systematic reviews are of high methodological quality, because of the systematic and explicit methods used to identify, select and critically appraise relevant research. After extensively searching for all trials, only controlled clinical trials (studies of the highest evidence) with predefined characteristics are included. Thus authors are really looking for all the high level evidence there is, instead of grabbing some papers from the drawer or looking at the core English language journals only.
6. Is this new information? No, not really. In fact this systematic review is an update of a previous version, published in 2003. The studies included and the conclusions remain the same. As shown from the scheme below (taken from a figure in a very interesting opinion paper entitled “Challenges to cancer control by screening” (see abstract here), the attitude towards breast self examination already changed soon after the original trials were published.
M.N. Pollak and W.D. Foulkes: Nature Reviews Cancer 3, 297 (2003)
7. Omg? …. All Cochrane Systematic have to be regularly updated to see if there isn’t any new evidence that could alter the conclusions. In this case, after updating the search, no new studies of good quality were found. However, there are still some trials ongoing.
8. Can we rely on these conclusions? Is the Cochrane Review of good enough quality? The Cochrane Review itself is of high quality, but the two randomized studies included, one from Russia (1999: ~122,500 participants) and one from Shanghai (2002: ~266,000 participants) have some serious flaws. For instance, both studies did not have an adequate allocation concealment (keeping clinicians and participants unaware of the assignments). An inadequate concealment undermines the validity of a trial (see for instance this 2002 Lancet paper). Also, description of statistical methods was lacking. Furthermore, data from the Moscow-branch of the Russian study were incomplete (these are excluded), mammography might have been used additionally and in the Shanghai trial there was a large difference in all-cause mortality in favor of the control group, suggesting that the two groups were imbalanced from the start.
9. Can the results of these rather old trials from countries as China and Russia be directly translated to the situation in Western Countries with a high standard of care? Intuitively I would say ‘probably not’. However, we still don’t know whether the current western quality of care would actually lead to a better outcome after early detection, because it has never be tested in a well performed controlled trial.
10. Is this outcome applicable to anyone? No, the studies are applicable to healthy, middle-aged woman without any particular risk. Screening methods might be more useful or even required for woman at high risk (i.e. familiar predisposition, previous ovarian or breast cancer).
11. Still, in recent interviews experts in the field say they do know that BSE is beneficial. One doctor for instance referred (in this Medscape paper) to a recent trial, that concluded that breast self-examination should be promoted for early detection of breast cancer (see here). Either these doctors/experts give their personal opinion, refer to unpublished data or to studies with a lower evidence level. For instance the study referred to by Dr. Goldstein above was a retrospective study looking at how accurately woman could detect a breast tumor. Retrospective studies are more biased (see previous post on levels of evidence for dummies). Furthermore this study didn’t evaluate a hard outcome (survival, better prognosis) and there are just as many retrospective studies that claim the opposite, i.e. this article of Newcomb et al in J Natl Cancer Inst. 1991(abstract).
12. Should woman refrain from breast self examination then? I found a short article (half A4) in the Dutch woman’s magazine (!) Viva very clear and concise.
Four woman gave their opinion.
A patient who had had a previous breast tumor kept on checking it (high risk group).
http://breastselfexam.ca/section1slide2.html
The director of a patient association said: “there is no evidence that BSE is beneficial: don’t feel quilty if you don’t check your breasts. But it might have a reassuring effect if you do”.
The spokeswoman of the Dutch association “struggle against cancer” (KWF) said that they didn’t promote structural breast exam any longer, but they advised to “know your body” and know the alarm signals (retracting nipple etc), much the same way as you check for alterations in nevi. Most woman find small alterations anyway, said another, for instance when taking a shower. Indeed, exemplified by my own experience: 18 years ago my mother detected breast cancer when feeling a lump in her breast under the shower (malignant, but curable).
The Cochrane authors are also very clear in their review about the necessity of women noticing changes to their breast.
“Some women will continue with breast self-examination or will wish to be taught the technique. We suggest that the lack of supporting evidence from the two major studies should be discussed with these women to enable them to make an informed decision.
It would be wrong, however, to conclude that women need not be aware of any breast changes. It is possible that increased breast awareness may have contributed to the decrease in mortality from breast cancer that has been noted in some countries. Women should, therefore, be encouraged to seek medical advice if they detect any change in their breasts that may be breast cancer.”
Listen to this Podcast featuring the Cochrane authors to learn more about their findings
Periodieke borstcontrole, uitgevoerd door vrouwen zelf of door artsen/verplegers, is jarenlang gepromoot, omdat je hierdoor eerder borstkanker zou ontdekken, waardoor het beter te genezen is. Deze gedachte wordt actief uitgedragen door verschillende organisaties en Internetbedrijven (die bijvoorbeeld speciale handschoenen verkopen, zie figuur).
Ik zal proberen om dit onderwerp in een vraag-en antwoord-vorm te bespreken.
1. Wat zijn de conclusies uit de studie? Dat structureel borstonderzoek door vrouwen zelf of door artsen/verplegers meer kwaad dan goed doet, en dus niet langer aanbevolen kan worden.
2. Welk kwaad, welk goed? Maandelijkse controle van de borsten leidt niet tot minder sterfte (niet ‘beter’), maar wel tot 2x zoveel biopsies (kwaad, ‘harm’).
3. Waarom kijken ze alleen naar sterfte? Ze keken ook naar het aantal ontdekte kankers en hun stadia, maar sterfte (of eigenlijk overleving) is veel belangrijker voor de patient. Stel dàt je eerder borstkanker vindt door screening, maar dit leidt niet tot genezing en/of een betere kwaliteit van leven, dan schiet de patient daar niets mee op, integendeel (zij weet het langer).
4. Waarom worden biopsies als ’schadelijk’ gezien?
Een biopsie is een medische ingreep, die -zeker in het geval van vermoede kanker-, een langdurig negatief kan effect hebben op iemand’s psychische gesteldheid. Biopsies en andere testen, die nodig zijn om kanker uit te sluiten kosten veel geld. Of dit het ‘waard’ is hangt af van hoe nuttig die testen werkelijk zijn, dus of ze de kans op overleving of een betere kwaliteit van leven verhogen.
5. Wat voor een studie is het? Het is een systematisch review (van “gecontrolleerde” klinische studies), gemaakt door auteurs van de Cochrane Collaboration (zie Glossary). Over het algemeen zijn deze reviews van uitstekende methodologische kwaliteit, omdat studies volgens een vast stramien gezocht, geselecteerd, beoordeeld en samengevat worden. Van te voren worden alle criteria vastgelegd. Dus de auteurs proberen echt alle evidence (positief of negatief, zonder taalbeperking) boven water te krijgen in plaats van wat artikelen uit de kast te trekken of alleen maar de top-tijdschriften te selecteren.
6. Is deze informatie nieuw? Nee, niet echt. Dit systematische review is in feite een update van een vorige versie uit 2003. De geincludeerde studies en de conclusies zijn hetzelfde. Zoals te zien in het schema hieronder (Nature Reviews Cancer 2003, samenvatting hier), is de houding ten opzichte van borstzelfcontrole al sinds de publicaties van de oorspronkelijke studies (die in het Cochrane Review opgenomen zijn) veranderd. De Amerikaanse Cancer Society beveelt bijvoorbeeld al sindsdien maandelijks zelfonderzoek niet meer aan.
M.N. Pollak et al: Nature Reviews Cancer 3, 297 (2003)
7. Huh? …. Alle Cochrane Systematische Reviews behoren regelmatig ge-update te worden om te kijken of er geen nieuwe evidence is die tot een andere conclusie leidt. In dit geval werden er geen nieuwe studies van goede kwaliteit gevonden. Wel lopen er nog enkele studies.
8. Kunnen we van deze conclusies op aan? Zijn Cochrane Reviews van een voldoende kwaliteit? Het Cochrane Review zelf is van een goede kwaliteit, maar op de 2 studies die opgenomen zijn in het review (een uit Rusland uit 1999 met ca. 122.500 deelnemers en een uit Shanghai uit 2002 met ca. 266.000 deelnemers) is wel het een en het ander aan te merken. In beide studies was de blindering van de patienten en de behandelaars voor de toewijzing van de behandeling (concealment of allocation) onvoldoende. Daarmee wordt zo’n studie minder valide (zie bijv. dit artikel uit de Lancet van 2002). Verder was de beschrijving van de statistische methoden onvolledig, waren gegevens van de Moskouse tak van de studie Russische studie niet compleet (zijn wel uitgesloten) , en was er in de Shanghai studie een groot verschil in algehele sterfte (dus niet alleen borstkanker), wat een duidelijke aanwijzing is dat de 2 groepen al vanaf het begin niet gelijkwaardig waren.
9. Zijn de resultaten uit deze oudere studies uit landen als China en Rusland zondermeer op Westerse landen van toepassing? Intuitief zou ik zeggen van niet. De zorg in Westerse landen en de hedendaagse behandelingen zijn mogelijk beter. Alleen weten we niet of screening door zelfonderzoek hier wel tot een betere uitkomst zou leiden, omdat dat nooit in goede gecontroleerde studies is bestudeerd.
10. Gelden de conclusies voor alle vrouwen? Nee, de studies zijn allen gedaan -en daarom alleen van toepassing op gezonde vrouwen van zo’n 35 tot 65 jaar. Screeningsmethoden, waaronder borstzelfonderzoek, zijn wel aan te bevelen voor vrouwen, die tot de risicogroep behoren (vrouwen die erfelijk belast zijn of die eerder al borst- of eierstokkanker hebben gehad).
11. Toch stellen bepaalde deskundigen dat zelfonderzoek wel gunstig is. Een dokter (Dr. Goldstein) verwees daarbij in een interview in Medscape (zie hier) naar een heel recente studie (zie hier). Deze artsen/deskundigen geven hun persoonlijke mening, verwijzen naar niet-gepubliceerde studies of naar studies met een lagere bewijskracht. De studie waar Dr. Goldstein naar verwijst is bijvoorbeeld een retrospectieve studie, die alleen onderzoekt hoe goed vrouwen borstkanker kunnen vaststellen. Retrospectieve studies hebben altijd meer vertekening (zie een vorig bericht over het beste studietype… voor dummies). Verder keek deze studie niet naar harde uitkomsten (overleving, betere prognose). Daarnaast zijn er evengoed retrospectieve studies die het tegenovergestelde beweren, zie bijvoorbeeld dit artikel van Newcomb PA et al in J Natl Cancer Inst. 1991(abstract).
12. Moeten vrouwen dan helemaal geen borstcontrole meer doen?
Ik kwam toevallig ergens op een terrasje een klein stukje in de Viva (1-7 aug 2008) tegen dat ik heel duidelijk vond.
4 Vrouwen gaven hun mening.
Een vrouw die eerder borstkanker had gehad bleef maandelijks controleren (risicogroep). De directeur van de Borstkankervereniging zei: “Wetenschappelijk is aangetoond dat borstcontrole niet zorgt voor minder sterfte door borstkanker. Voel je niet schuldig als je het niet doet. Doe je het wel om zo je borsten goed te leren kennen, dan heeft dat vooral een psychologisch effect”. De woordvoerdster van de KWF Kankerbestrijding zei dat ze periodieke zelfcontrole niet langer promoten, maar dat ze ook niet zeggen dat het zinloos is. Het is net als bij moedervlekken, die controleer je ook niet gestructureerd, maar als je een verandering ziet ga je wel naar de huisarts. Daarmee in overeenstemming zei de directeur van Pink Ribbon dat 90% van de vrouwen borstkanker zelf opmerkt: als er iets zit merk je het toch wel, bijvoorbeeld tijdens het douchen. Inderdaad kan ik dat uit eigen ervaring bevestigen. Mijn moeder voelde jaren geleden een knobbeltje terwijl ze zich aan het douchen was (kwaardaardig, maar genezen).
De Cochrane auteurs zeggen in hun review ook heel expliciet dat het absoluut noodzakelijk is om naar de dokter te gaan als vrouwen veranderingen aan hun borst opmerken.
“Some women will continue with breast self-examination or will wish to be taught the technique. We suggest that the lack of supporting evidence from the two major studies should be discussed with these women to enable them to make an informed decision.
It would be wrong, however, to conclude that women need not be aware of any breast changes. It is possible that increased breast awareness may have contributed to the decrease in mortality from breast cancer that has been noted in some countries. Women should, therefore, be encouraged to seek medical advice if they detect any change in their breasts that may be breast cancer.”
Hier is de Podcast waarin de Cochrane auteurs over hun studie vertellen.
Ook in de Psychiatrie een nauwe verstrengeling tussen farmaceutische industrie en wetenschap.
Beluister hier het interview met Trudy Dehue in het radioprogramma Argos (de Ochtenden) van de VPRO/VARA (vrijdag 6 juni 2008), over haar boek De Depressie Epidemie
[ISBN: 9789045700953] .
In dit interview komt vooral de invloed van de industrie op het (te vaak) voorschrijven van depressiva (prozac e.d.) en het verdoezelen van bijwerkingen aan de orde.
In deze audio-opname wordt er ook op gewezen dat editors van vooraanstaande engelstalige tijdschriften (Lancet, BMJ) regelmatig de verstrengeling van geneesmiddelenindustie en wetenschappelijk onderzoek stevig aan de kaak stellen.
Klik hier voor zo’n editorial van Fiona Godlee BMJ 2008;336: “Editor’s Choice – Doctors and the drug industry” en hier voor een editorial van RE Ferner – BMJ 2005; 330: 855-856: “The influence of big pharma”.
Toevallig speelt nu ook de kwestie van het ADHD-medicijn Strattera, dat volgens het Nederlands Comité voor de Rechten van de Mens (NCRM) het risico op suïcidaal gedrag, hartaandoeningen en leverbeschadigingen zou verhogen. De NCRM beschikt over een gedeelte van het evaluatierapport over dit medicijn ‘Strattera Risk Benefit Assessment’ (2006). In de 67 beschikbare pagina’s zijn o.a. de volgende gegevens te vinden:
130 meldingen van suicidaal gedrag in één maand
766 spontane meldingen van hartaandoeningen
172 meldingen van leverbeschadigingen
20 geslaagde zelfmoorden
Morgen [9 juni 2008] is er een zitting van de Bestuursrechtbank in Amsterdam aangaande de openbaarmaking van het hele rapport in het kader van de Wet Openbaarheid Bestuur. Het Nederlands College ter Beoordeling van Geneesmiddelen (CBG) wilde het rapport namelijk niet vrijgeven.
“A young doctor sat down with a terminal lung cancer patient and her husband to discuss the woman’s gloomy prognosis. The patient began to cry. Then the doctor did, too.
At a recent meeting of the Society of General Internal Medicine, Dr. Anthony D. Sung of Harvard Medical School and colleagues reported that 69 percent of medical students and 74 percent of interns said they had cried at least once.
In the 1988 PBS documentary “Can We Make a Better Doctor?” a Harvard medical student, Jane Liebschutz, sees her patient unexpectedly die during a cardiac bypass operation. She suddenly bursts into tears and wanders away from her colleagues until the chief surgeon, who has witnessed what happened, assures her that her response was natural.
Dr. Benita Burke, skipped lunch to spend extra time with her cancer patients. They dubbed this time “mental health rounds,” during which they could address issues that were not strictly medical. Many times, Dr. Burke would wind up in tears or giving an embrace.
The comments in the NY Times and at two blogs (DB’s Medical Rants and Clinical Cases and Images) are also worth reading. These responses illustrate that there is not one truth. Whether strong emotions like crying are appropriate depends on the doctor, the patient, the situation and where and how emotions are expressed. Most patients do not seem to appreciate outright crying at their bedside as it makes them insecure. A crying doctor might also feel like a final verdict: no hope is left. But nobody would blame an intern for crying with his or her mates. And a doctor who cries in front of the patient’s family when sharing information about a serious medical error might help to accept what happened.
So, what kind of doctor would you prefer?
I agree with Dr Hiram Cody, cited in the NY Times, who cautions against excess emotions. Although Dr. Cody emphasizes the need for doctors “to understand, to sympathize, to empathize and to reassure,” he says his job “is not to be emotional and/or cry with his patients for two reasons: It is not therapeutic for the patient, and it will cause “emotional burnout”. (although I’m not sure about the latter)
Personally I prefer a doctor with great knowledge, but openminded to other ideas, attentive and empathic, but without loosing a certain distance, a good listener, explaining disease and treatment options, ….. but no crying, please, never! Never when I’m around. Not when I’m the patient.
Dit stuk bespreekt de voor en tegens van een dokter die zich “laat gaan”.
Enkele citaten:
“A young doctor sat down with a terminal lung cancer patient and her husband to discuss the woman’s gloomy prognosis. The patient began to cry. Then the doctor did, too.
At a recent meeting of the Society of General Internal Medicine, Dr. Anthony D. Sung of Harvard Medical School and colleagues reported that 69 percent of medical students and 74 percent of interns said they had cried at least once.
In the 1988 PBS documentary “Can We Make a Better Doctor?” a Harvard medical student, Jane Liebschutz, sees her patient unexpectedly die during a cardiac bypass operation. She suddenly bursts into tears and wanders away from her colleagues until the chief surgeon, who has witnessed what happened, assures her that her response was natural.
Dr. Benita Burke, skipped lunch to spend extra time with her cancer patients. They dubbed this time “mental health rounds,” during which they could address issues that were not strictly medical. Many times, Dr. Burke would wind up in tears or giving an embrace.
Behalve dit stuk zijn ook de commentaren in de NY-times zelf en op 2 blogs (DB’s Medical Rants en Clinical Cases and Images) de moeite van het lezen waard. Diverse meningen passeren de revue, zowel die van dokters als patiënten of familie. Hieruit blijkt dat er niet één waarheid is. Of het uiten van heel sterke emoties kàn, hangt erg af van de dokter, de patient, hun relatie en de situatie. De meeste patienten vinden het uiten van emoties wél belangrijk (“een dokter moet geen robot zijn”), maar velen vinden te sterke emoties zoals het in huilen uitbarsten waar de patient bijstaat niet prettig, omdat ze juist willen dat ze op hun arts kunnen steunen. Gaat het om een heel slechte boodschap (kanker bijvoorbeeld) dan kan de patient het ook ervaren dat hij opgegeven is: de arts neemt alle hoop dan in een keer weg. Maar als een co-assistent bij het overlijden van zijn/haar “eerste” patient bij haar vrienden uithuilt kan iedereen dat begrijpen. Als een dokter huilt wanneer hij slecht nieuws brengt over een dierbare ten gevolge van een medische fout, dan kan dat bij de verwerking helpen.
Maar welke dokter zou jij verkiezen?
Ik ben het in grote lijnen met Dr Hiram Cody eens. In de NY Times waarschuwt hij tegen overmatige emoties. Hij benadrukt weliswaar dat artsen begripvol moeten zijn, moeten meeleven, empathisch moeten zijn en gerust moeten stellen, maar echt emotioneel zijn en huilen raadt hij af omdat het noch de patient noch de arts goed doet.
Persoonlijk verkies ik een arts met een goede kennis van zaken, maar die wel openstaat voor andere opvattingen, die meeleeft en empathisch is wanneer nodig. Hij moet goed kunnen luisteren, mij serieus nemen, goed kunnen uitleggen waarom ik iets heb en welke behandelingsmogelijkheden er zijn (met hun voor-en nadelen). Hij moet eerlijk zijn en als ik het nodig zou hebben is een beetje emotie en een beetje warmte prettig. Maar huilen, nee. Geen huilen waar ik bij ben. Niet wanneer ik de patient ben.
Every now and than my collegue Heleen provides me with an interesting paper (a nice web 1.0 way of sharing things). Last Friday I found this paper on my desk: “Etiquette-Based medicine” from Michael W Kahn. The paper in this week’s New England Journal of Medicine is not about the substition of “evidence based medicine” or “eminence-based medicine” by “etiquette-based medicine”. It is about the importance of a good attitude of doctors towards their patients.
When psychiatrist Dr. Khan hears patients complain about doctors, their criticism often has nothing to do with not feeling understood or empathized with. Instead, they object that “he just stared at his computer screen,” “she never smiles,” or “I had no idea who I was talking to”, he writes.
On the contrary, during his own hospitalization he noticed the professional attitude of his European-born surgeon having Old World manners (dress, body language, eye contact etc.).
“The impression this surgeon made was remarkably calming, and it helped to confirm my suspicion that patients may care less about whether their doctors are reflective and empathic than whether they are respectful and attentive”, wrote Dr. Kahn.
Therefore, Khan suggests that medical education and postgraduate training should place more emphasis on “etiquette-based medicine” as it forms the basis of the patient-doctor relationship. One approach would be to introduce a checklist to enforce an etiquette-based approach. A checklist for the first meeting with a patient would for instance cover items like ‘asking permission to enter the room and wait for an answer’, ‘introducing yourselve, showing your ID badge’ and ‘explaining you role on the team’.
This approach bears resemblance to the program introduced at several Academical Medical Centres in the Netherlands. For instance Maas Jan Heineman, nowadays Professor Gynaecology in the Amsterdam Medical Centre (AMC), Amsterdam, helped to introduce such a “etiquette program” in Groningen and in Amsterdam. The competences of the doctors and the integration of knowledge, skills and attitude are now central to the new curricula. As Heineman says it: “What good are doctors who have great knowledge but behave badly. Or vice versa”?! )
The reviewer, Iain Lawrie, is very positive about the content:
“The layout and language are clear and unambiguous throughout. Important points are emphasised where necessary, and at no time does reading become laborious. Far more importantly, however, the authors have employed an evidence-based approach that moves these titles from the realm of personal opinion and musings to an authoritative work. The frequent use of examples further serves to promote this series as a ‘useable’ guide. (….)
The book gives examples Skills for Communicating with Patients, the authors use a logical approach to analyse the various aspects of communication relevant throughout the consultation process, which are then explored in greater depth over six chapters. They move from the initiation of a consultation (!), through information gathering, structuring, and relationship building, to the often neglected areas of explaining and planning and, finally, closing the encounter.”
Thus it seems that the awareness within the medical community about the necessity of good communication skills is growing. The tools are there, some curricula have already embraced “etiquette based medicine” (although not called by that name) and it seems just a matter of time before “etiquette” becomes an integral part of medical education.
Lets conclude with a quote from the abovementioned book, that also applies to professions other than medical:
‘If you can’t communicate, it doesn’t matter what you know’
Van mijn collega Heleen krijg ik af en toe een artikel of een krantenknipsel toegeschoven. Nog geheel op de ouderwetse web 1.0 manier, maar eigenlijk wel zo leuk. Van de week lag er een artikel in mijn postvak getiteld “Etiquette-Based medicine”, geschreven door Michael W Kahn. Ik dacht eerst “weer een zogenaamd alternatief voor “evidence based-” of “eminence-based medicine”, maar het artikel in het laatste nummer van de New England Journal of Medicine ziet “Etiquette-Based medicine” meer als een aanvulling. Het gaat over het belang van een juiste attitude van de arts tegenover zijn patient.
De klachten die Dr. Khan als psychiater van patiënten over artsen hoort gaan meestal niet over gebrek aan empathie maar veel meer over zaken als: “hij staarde maar naar zijn computerscherm”, “er kan geen lachje af”, “ik had geen idee met wie ik nou te maken had”.
Toen Khan zelf in het ziekenhuis lag had hij precies de tegenovergestelde ervaring. De behandelend chirurg van europese herkomst kwam door zijn zogenaamde ‘Oude-Wereld’ houding (kleding, lichaamstaal, oogcontact) bijzonder professioneel en geruststellend over.
Dit sterkte Khan in zijn idee dat patiënten het veel belangrijker vinden dat hun arts hen met respect en met aandacht bejegent dan dat hij heel erg meelevend is.
Hij stelt daarom dat er in het medisch onderwijs meer aandacht moet komen voor wat hij “etiquette-based medicine” noemt, daar dit de grondslag van een goede patient-doctor relatie vormt. Een checklist zou daarbij kunnen helpen. Als een arts de patient voor het eerst ziet zou hij bijvoorbeeld eerst moeten vragen of hij welkom is en pas als de patiënt akkoord is zou hij naar binnen moeten gaan, een hand moeten geven en zich voor moeten stellen.
De recensent Iain Lawrie is erg positief over het boek. Het is helder geschreven en legt de juiste nadrukken. Verder stijgt het werk door de evidence-based benadering boven een opeensomming van feitjes en meningen uit. Het begeleidende boek geeft voorbeelden van hoe te handelen in bepaalde situaties, bijvoorbeeld tijdens het eerste consult. Het boek omvat dus precies wat Khan suggereerde.
Het lijkt er dus op dat men zich binnen de medische wereld steeds meer bewust wordt van de noodzaak van goede communicatievaardigheden. Er zijn al ‘leermethoden’ beschikbaar en in enkele curriculums is etiquette based medicine reeds verweven (zij het onder een andere naam). Het is slechts een kwestie van tijd voordat etiquette een vanzelfsprekend onderdeel van de medische vorming is.
Tot slot een citaat uit het eerder aangehaalde boek (dat eigenlijk op veel meer beroepen van toepassing is):
‘If you can’t communicate, it doesn’t matter what you know.’
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