Issue 27 / 22 July 2013

ALL medical practitioners have patients we consider anxious and very unlikely to have much wrong with them — the ones we describe as the “worried well”.

It is hard to deal with many symptoms that have no diagnostic fit. Many words have been coined to enable us to vent, terms such as diagnostic dilemma, medically unexplained physical symptoms (MUPS), somatisation and heartsink.

An inexplicable mix of symptoms generates anxiety in the doctor as well as the patient in all types of medical practice. Tests on such patients are often ordered as a triage tool without any clear diagnosis, or specific physical findings — “just in case, to make sure we are not missing anything” that could be the cause of such “illness” in a patient.

There is a presumption that ruling out a diagnosis by getting normal results is a good thing. There is an assumption that the normal results will provide reassurance.

Our perception is that normal results followed by some variation on a positive “you are in good health” or negative “nothing is wrong” will reduce concern both in us and the patient, and reassure the patient and doctor alike that nothing serious is going on.

However, contrary to our expectations this process does not usually result in reassurance.

A review has shown that providing normal test results to patients with a low probability of disease does not have any meaningful impact on patients’ illness worry, anxiety, ongoing symptoms, medication use and health-seeking behaviour in the short and longer term. Tests included in this review were endoscopy, Helicobacter pylori testing, electrocardiography, blood tests or continuous event monitoring (for chest pain or palpitations respectively) and imaging (for back pain or headaches).

The impact of investigations with normal test results on patients is not what we think it is. Most of the time this does not reassure them, make them feel any better, or make them less likely to seek help.

The patient with normal results continues to exhibit the same frequency of symptoms, consultations and medication use.

Medical interventions may unintentionally reinforce somatisation and, more importantly, the way we communicate information can amplify the adverse effects.

The good news is that discussing the meaning of normal results and giving printed information before testing can create some reassurance, but simply performing tests with normal results, or providing printed information after the test does not.

We commonly order diagnostic tests in patients with vague symptoms such as tiredness, but when “tired patients” had investigations performed, only 3% had abnormal results.

Most patients with vague symptoms rather than specific diagnostic symptoms or signs are unlikely to have any serious illness, and it is unlikely investigations will provide abnormal results, or a diagnosis.

We define “normal” as beyond two standard deviations, which is the 5% either side of the mean. So for every 20 tests, roughly one will be abnormal in a healthy person.

From discussions with colleagues, much of this is counterintuitive to us.

In the doctor–patient relationship, reassurance — defined as removing someone's doubts or fears, or restoring confidence — requires effective communication to understand a patient’s illness concerns, which may be very different from ours. If someone believes they are ill, it takes more than a normal test result to change that belief.

Contrary to our clinical behaviour and beliefs, there is no reassurance provided to patients by normal test results. In fact, some studies suggest we may just be increasing anxiety.

Perhaps we could do less and achieve more.

 

Dr Jane Smith is associate professor of general practice in the Faculty of Health Sciences and Medicine at Bond University, Queensland.

Acknowledgements to Professor Chris Del Mar and Professor Paul Glasziou for their support.

Jane McCredie is on leave.
 


Poll

Are you seeing more "worried well" patients?
  • Yes (64%, 46 Votes)
  • No (22%, 16 Votes)
  • Don't see patients (14%, 10 Votes)

Total Voters: 72

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15 thoughts on “Jane Smith: The dangers of normal

  1. Vikki Monroe says:

    More time and investigation is exactly what may help and result more often in a correct, timely, relevant and appropriate diagnosis. Rather than a quick and easy of a “mental” condition/disorder as discussed here does, especially (statistically) for women, with the “stigma” professionally, personally and financially that also comes attached. This can and does, destroy a patient’s life. The “if” or when the actual physical cause and correct diagnosis is found, can also be too late for treatment. With that, Include the irreparable situation and impact it has already taken on one’s life? That alone shows, these situations need more attention to be addressed. Normal pathology results do and can be interpreted incorrectly, especially when done in haste and preconceived acceptance of misdiagnosis. All of this is only the tip of an iceberg and escalating issues across the board. Lack of time, focus, correct diagnostic guideline and procedure not being met and/or given in primary medical care, often. Ensuing stigma’s consequence also given so easily is something a patient has to face daily, frustrations coupled with ongoing situational impact on their life “missed”. Stress, depression, somatisation, suicidal thoughts, tendencies, associated psychologically conditions, are now more aptly fitting, so perhaps “no longer well with obvious worries” label could be made available. 

  2. Amy C says:

    Ruth, I have friends with EDS, and I know the struggles they have gone through to get diagnosed & to get medical help. They are similar struggles to my own, as ME/CFS & Fibromyalgia also do not have a cure, & are looked upon by the medical profession as “Illness Behaviour” & if you dare to do any research yourself, you are “Health Seeking” or the new term some have come up with is “Cyber-chondriac”…..

    I wish your daughter & your family all the best in your journey (that’s how I’ve come to see my life these days….)

  3. Huw R Davies says:

     The Cancer Council reports that one in two Australians will develop cancer in the next five years.  What are doctors missing?  These patients have a lot to worry about.

    Those numbers somehow don’t look right……..

     

  4. Camille Sergeant says:

    As a parent, I have concerns about the readiness of  practitioners to label a person presenting with a recurrent symptom/s over time, with hyperchondria disorder/ abnormal illness behaviour.  Our child was diagnosed withl hypotonia at birth. and we  were just told that she would never be a ballet dancer, and other than that – don’t worry about it. So we didn’t. However, this child had significant problems with feeding, developmental delays, excessive lethargy and fatigueability, scoliosis, kyphosis, lumbar lordosis,  feet that collapsed on weight bearing, Reflux, ongoing gastrointestinal issues, recurrent joint and muscle pain, chronic headaches, atypical “asthma” , shortness of breath and chest pain with minimal activity,  Temporo-Mandibular Joint Dysfunction,  difficulties swallowing, “failure to thrive” as an infant and persistent difficulty maintaining weight  since then, plus quite a number of other symptoms.  Despite asking questions and expressing concerns periodically, twenty very difficult years later, after being assured she was fine – it was just stress, growing pains, and we were just “over-anxious parents”, she has been diagnosed by specialists with Ehlers Danlos Syndrome and CNS Hypersomnia, . All her  symptoms from chilhood are well-documented aspects of these disorders. Both disorders are rare, have no cure, and there are very few physicians in Australia  with in-depth knowledge of these. Despite this our GP clinic continues to regard her symptoms as “Illness Behaviour”  and our attempts to understand the conditions to assist in self-management as ” Health Seeking”. Labelling can put people in impossible positions..

      

  5. Amy C says:

    As a patient, I know what it’s like to have medical tests done & the results come back “Normal”. But that’s not to say there’s nothing physically wrong with me, it’s just that the medical tests haven’t caught up yet.

    There is no pathology test for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), or Fibromyalgia (FM), or hundreds, perhaps thousands of other debilitating diseases that are out there that may affect a few people through out the world, or like ME/CFS & FM, millions of people.

    Over 100 years ago, Diabetics were called Hypochondriacs because there wasn’t a test yet that could tell doctors why those people were sick. Now it’s a case of a few blood tests, & “Hey presto! You’ve got Diabetes! Cut out the sugar!”

    One day soon, people with ME/CFS, FM & other illnesses that make doctors believe these people are just “worried well” or “anxious”, “depressed”, “hypochondriacs” or suffering from “somatisation disorders”, will also have the pathology tests to show what they’ve been saying all along!!!

  6. Andew Nielsen says:

    @Advocate for the worried well: I admire your stand.  People do not have hypochondroiasis or a somatisation disorder or anything else until they have had someone spend the time, get a history, do a physical examination and order enough investigations.  

  7. Zenon Gruba says:

    I find the above article extremely concerning.

    I see the “worried well”.  I find real detectable disorders in nearly all of them.  Not one of my patients have ever had a doctor’s hand placed on their person.  The Cancer Council reports that one in two Australians will develop cancer in the next five years.  What are doctors missing?  These patients have a lot to worry about.

    The Peter MacCallum si on record saying that it needs more money to discover the causes of cancer.   How much more money do they need?  The Monash University Dept of Nutrition has printed an article in the Age that states that margarine causes cancer.  The ABC 4 Corners reports that carcinogenic dioxins are being sprayed on our foods.  

    Where is there any action to research these causes?  

    No wonder patients are worried when their medical experts don’t seem to be doing anything active to prevent such statistics. 

  8. CKN Queensland Health says:

    Great article.  It makes me reflect on my practice, and I disagree with some of the comments.

    Mums with coughing kids.  Tired students. These are not people with anxiety or hypochondriasis, just normal people  following expectations and doctor’s orders.

    We have to accept that – the more we keep giving unnecessary treatments or placebo investigations – the more people will keep presenting expecting them. I think as doctors we have created some of this demand from the ‘worried well’.

    I’m happy to read an article like this to reflect on and possibly change my practice.

    Dr Warren Jennings

  9. Alex Wood says:

    As an old fellow, who read Michael Balint’s advice and adopted it, there is nothing so valuable to patients as our attention and TIME!  It earns you less, so what sort of person do you wish to be, a curer or an earner?

    Alas our present system of fee for service and Government having a big say militates against a solution to that, especially in a society that values money, power & position, in my view far too much.  Alas I have no remedy for the human condition either on doctor or patient side, both need to be better communicators to help the problem, but that is not a fix.  Compared to much of the world, we in Australia & developed world use, earn & “need” too much, so contribute to inequity.

  10. DR ANTHONY LOWY says:

    Clarification exists in two seminal Papers by two Psychiatrists in 1987:

    1. Abnormal Illness Behaviour : Prof I Pilowski

    2. Abnormal Treatment Behaviour : Prof B Singh

  11. Andrew Nielsen says:

    I think that the patients you refer to have hypochondriasis, or perhaps a somatoform disorder.  Those are the DSM terms.  The good news is that there are already standard procedures for managing hypochondriasis and somatoform disorders.  They are to have regularly scheduled visits with physical examination of the effected part, not doing repeated investigations, allowing the patient to talk about stressors and treating anxiety, depression and psychosis if they are present.  SSRIs are recommended, and Efexor (and TCAs) have the advantage that they can help with the neuropathic component of pain.  Relaxation training, physical exercise and CBT also all help.  

    I myself think that listening to patients is probably the most important element of treatment.  As one person told me, people will not listen until they have been listened to.  As someone else told me, they don’t care what you know, they just want to know that you care.  I myeslf think that educating patients about maintainnig good health with exercise, and about how cartesian dualism is a false dichotomy might help too.    

  12. Marion Lustig says:

    A comment about referring these patients. Yes, sometimes they can be referred and helped by a psychiatrist or a psychologist. 

    At the very least, this can achieve a diagnosis.

    But many of these somatising patient will not accept a referral, or even when referred, may not be treatable, at least in the short-term. As I wrote before, this may be because, by definition, they do not have words for their concerns. 

    One of Michael Balint’s most important insights was that, very often, these patients are optimally treated by a GP. The GP can develop a relationship with the patient over a period of time. Within a trusting relationship, the patient, may, at best, be able to find the words to express their concerns and thus reduce or eliminate their need to somatise. At worst, the GP can support the patient and protect them from unnecessary and potentially harmful investigations and interventions. Balint thought that dealing with these patients required specialised skills and that these were skills that GPs were in the best position to exercise.

  13. Bond University Library says:

    Thank you for your comments. They make me realise the missing words physically or physical, admittedly there is a biomedical focus eg “ALL medical practitioners have patients we consider anxious and very unlikely to have much physically wrong with them”.

    My focus was on the lack of benefit or even potential harms of tests. This is an issue because we commonly use investigations as a means to deal with complaints instead of addressing anxieties and worries. Perhaps becasue it is easier.

    There was no intent to belittle the importance of recognising severe consequences of anxiety, or the need to address mental health issues and other influences on health

     

  14. john buchanan says:

    The term “worried well” is a regrettable and inappropriate term- it implies that worry is “nothing”. I obsolutely agree with Marion’s posting. Surely it is clear we have a major mental health problem in this country; the “high prevalence disorders” -depressive illness and anxiety disorders- are not “nothing’ but major community health problems. Anxiety disorders, and depressive disorders,  have a serious morbidity and mortality assocated with them. 

    It is time that all medical practitioners understood that anxiety in the presence of normal tests, does not mean that the person has “nothing wrong with them”; it means they have an anxiety disorder! (or depressive disorder) which should be diagnosed and the patient either treated , or referred to a psychiatrist for a proper assessment and management plan, or treated in conjunction with a psychologist.

  15. Marion Lustig says:

    Thanks for a really interesting article.

    One way of thinking about it is that anxiety about physical symptoms is not “nothing” and that these patients are indeed worried, but may be far from well.  Indeed, such anxiety exists in a spectrum of severity and can be utterly disabling. The extensive ordering of tests to reassure both patient and doctor can have unintended consequences, including unnecessary costs (sometimes astronomical), complications from invasive procedures, and perhaps most importantly, delayed diagnosis.  All too often, delayed diagnosis can lead to the impossibility of diagnosis, as the patient becomes entrenched in a sick role, sometimes with secondary gain.

    Michael Balint in his famous book “The Doctor, The Patient and His Illness” published in 1964 but still relevant today, wrote eloquently about these issues. In the Balint groups which he invented and which continue to this day, participants often discuss these kinds of patients. There is often much to be discovered about the real diagnosis.  

    I agree with the writer about doing less and achieving more. But there is doing and doing. Doing tests unlikely to be helpful is one thing. Doing what is required to help the patient is another kind of doing, which is more difficult. Balint said “don’t just do something, sit there!”. Sitting there in a helpful way is challenging, requiring skill, education, experience, wisdom and time,  as somatising patients by definition do not readily put their concerns into words. 

    Perhaps consider joining a Balint group?

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