Does doctors dismissing symptoms take its toll on patients?

By Stephen Beech

Patients have been left feeling suicidal after believing their doctor thought their symptoms were “all in their head.”

Dismissed symptoms can push patients to breaking point, reveals new research.

The study uncovers concerns about misdiagnosis, stigma and inconsistent care for people with autoimmune diseases who are also diagnosed with functional neurological disorder (FND).

University of Cambridge and University of East Anglia (UEA) researchers also discovered “deep disagreements” between doctors over FND diagnoses.

The research team says better communication, multidisciplinary working and more holistic care are needed to improve treatment of patients.

Lead author Melanie Sloan said: “FND is a recognized neurological condition that can cause symptoms such as weakness, shaking, changes in movement or feeling, and non-epileptic seizures.

“These symptoms are real and are not made up or under a person’s control.

“We wanted to better understand the challenges of diagnosing complex neurological symptoms in autoimmune diseases, and why patients and clinicians can sometimes see things very differently.

“Ultimately, our aim was to identify practical ways to improve communication, reduce distress and help ensure patients receive the most appropriate care and support.”

The research team explored how FND diagnoses are used and understood in people with autoimmune diseases.

They analyzed responses from international surveys involving 1,853 patients, 400 clinicians and 463 members of the public, as well as conducting interviews with patients and doctors.

The team examined how complex neurological symptoms in autoimmune diseases are diagnosed, interpreted and communicated in real-world healthcare settings.

They found that while 86% of patients agreed that a diagnosis of depression was correct, only 53% agreed with a diagnosis of fibromyalgia and 30% agreed with a diagnosis of FND.

Just 7% agreed with being told that their symptoms were “psychosomatic.”

Doctors taking part in the study described how difficult it can be to work out what is causing symptoms.

Many said they had little training in FND and others had very strong opinions either for or against FND diagnoses.

Patients and doctors reported examples of symptoms being put down to the wrong cause, with misdiagnoses reported in both directions.

Sloan, from UEA’s Norwich Medical School and the Cambridge University’s department of public health, said: “We still do not know enough about some of the ways autoimmune diseases affect the brain and nervous system to always be certain what is causing a particular symptom.

“FND is a real condition and people with FND need the right treatment.

“But we need to be careful about assuming we know the cause of every symptom and coming to quick conclusions.

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“There may be many different causes of neurological symptoms in autoimmune diseases which are very hard to untangle.

“Clearer explanations of diagnoses could help patients understand and accept them, while doctors need to be cautious when the cause of symptoms is not clear.”

The study found that the way a diagnosis was explained could make a big difference to how patients felt about it.

Doctors (72%) were much more likely than patients (50%) or the general public (48%) to say that mental-health symptoms were seen as more acceptable or less stigmatized when they were thought to be caused directly by the person’s physical disease.

Some patients described feeling distressed when an FND diagnosis seemed to suggest that their symptoms were psychological or something they could control.

The problem of stigma was also highlighted by Guy Leischziner, neurology consultant at Guys’ and St. Thomas’ hospital.

He said: “FND used to be known by a variety of outdated and offensive terms like ‘hysteria’, and some of the old ideas behind that term have unfortunately carried over into how people still think about FND today.

“It used to be thought that FND almost invariably had a psychological trigger, but we now know that this is not the case.

“There is also growing interest in how physical illnesses, including autoimmune diseases, may play a role in FND.”

The study, published in the journal Rheumatology International, found that patients were more likely to accept a diagnosis when doctors listened to them, explained why they thought a symptom had a particular cause, and explained how symptoms linked to FND differed from those caused by their autoimmune disease.

Michael Bosley, a patient and one of the study’s authors, said: “How doctors explain this uncertainty really matters.

“People need to know that their symptoms are being taken seriously, understand why doctors think a particular diagnosis fits, and feel able to come back if things change.

“The damage done by an explanation that’s unclear, rushed, or doesn’t acknowledge the patient’s experience was clear, with several patients in our study reporting feeling suicidal after a unempathetic diagnostic consultation.”

Lucy Calderwood, also a patient and co-author, said: “I think one of the most concerning findings from our study is that getting one of these diagnoses may be more about the doctor’s views and prejudgments than about the patient’s symptoms.

“So the same patient with the same symptoms could go to different doctors and one would say it was the autoimmune disease and another would say it is functional.

“And they’d get completely different treatment.”

Previous research from the same program found that women were more likely than men to report that their symptoms had previously been put down to psychiatric or “psychosomatic” causes.

Senior study psychiatrist James Bourgeois, from the University of California, said: “The brain and the body are closely connected.

“Symptoms experienced by the brain such as depressed or anxious mood, confusion, or irritability go along with pain, weakness, and other symptoms of illness experienced in other parts of the body.

“Brain-related symptoms can be the first sign of illness, so doctors need to consider brain-related symptoms along with body-related symptoms. Brain-related symptoms are part of the illness and are not under the patient’s direct control.”

He added: “Comprehensive care requires managing brain and body symptoms together in an integrated way, and doctors being honest about what we do not yet know.”