Medically Unexplained Symptoms

 

Guidance for health professionals on medically unexplained symptoms (MUS)

Click here for a download of this guidance document (pdf 1.3 MB)

 

January 2011

  • Making Sense of Symptoms
  • Managing Professional Uncertainty
  • Building on Patient's Strengths

Medically unexplained symptoms are ‘persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology'.

"Our remedies oft in ourselves do lie." All's well that ends well. Willilam Shakespeare

Key Learning Points

  • People want to be taken seriously - show you believe them.
  • Ask yourself and the patient "Am I hearing and understanding what you are trying to tell me?"
  • Doctors can make a difference to their patient's well-being even when their symptoms are unexplained.
  • Concentrate on helping to manage symptoms and improve functionality
  • Sometimes the only "therapy" needed may be the strength of your doctor-patient relationship - continuity of care and long-term relationship helps.
  • Be pre-emptively reassuring, yet show you have an open mind and will continue to reassess
  • Explain more than just ‘normalise'
  • Be explicit about your thoughts, your uncertainties and your expectations of referrals to specialist care.
  • Proactively communicate with other clinicians

Despite having a strong suspicion that there is no serious medical problem, GPs worry about missing something serious and are often left with a sense of dissatisfaction with such cases. Patients may feel unsupported and confused. Such uncertainty often leads to extensive and unproductive investigations.

This guidance will highlight the importance of clinicians trusting, perhaps more than they do, their own psychological abilities and the strengths of their therapeutic alliance with their patients. This would help achieve better concordance between addressing the patients' fears and managing their own anxiety and uncertainty.

MUS cannot easily be ascribed to recognised physical diseases.

Three main types:

  • pain in different locations;
  • functional disturbance of organ systems
  • complaints of fatigue or exhaustion

They might be caused by physiological disturbance, emotional problems, or pathological conditions which have not yet been diagnosed.

What should alert me?

MUS should be considered if you see a patient with

  • Physical Symptoms
  • For 3 months
  • Affecting functioning
  • Cannot be readily explained

Risk / associated factors for MUS

  • Long Term Conditions with anxiety/depression.
  • Childhood adversity/abuse 
  • More common in women
  • In severe cases overlap with Personality Disorder 
  • Recent infection; current physical illness; severe illness or death of close relative.

Why is this important?

  • Accounts for up to 20% of GP consultations 
  • MUS is associated with 20-50% more outpatient costs  & 30% more hospitalisation
  • The symptom complexes affect all ages
  • Investigation causes significant iatrogenic harm.
  • Annual healthcare costs of MUS in UK exceed £3.1 billion. Total costs are estimated to be £18 billion.

Outcomes for this group

  • 4%-10% go onto have an organic explanation for their presentation
  • 75% remain unexplained at 12 months;
  • 30% (10% - 80%) have an associated psychiatric disorder (usually depression, anxiety) depending on how many unexplained symptoms are present.
  • 59% with lung symptoms suffer hyperventilation.
  • 25% persists for over 12 months (in primary care) 

In secondary care, 50% of outpatients fulfil criteria for MUS with a wide range of disorders.

The following shows the % at 12 months 

  • Gynaecology (66%)
  • Neurology (62%)
  • Gastroenterology (58%)
  • Cardiology (53%)
  • Rheumatology (45%)
  • General Medicine (40.5%)


Effective Interventions do exist:

Techniques enable doctors and nurses to make sense of the symptoms, offering credible explanations and appropriate support, whilst avoiding behaviours that may worsen the situation. (See below for what helps in a consultation and what doesn't)


"It is not what you say that matters but the manner in which you say it;

there lies the secret of the ages."

William Carlos Willams, American poet 1883-1963

A mismatch - patients' help seeking and GP's care.


Doctors often manage the symptoms by minimising (normalising) and treating empirically; whereas patients usually want explanations and emotional support - for their symptoms to make sense.

Doctors and nurses, especially if unsure how to manage the situation, may assume patients want more than they do. The doctor may precipitate premature tests & referrals, perhaps to distance themselves from their patients; or by perceiving undue pressure to diagnose and cure.

Past health and psychosocial experiences may encourage some patients to minimise certain symptoms and over emphasise others to shift the doctor's attention in a particular direction.

People want reassurance that the doctor has considered all the possibilities. They will usually accept that there is uncertainty now, yet want assurance that their symptoms will be taken seriously and reassessed in future.

Therefore Consider...

Medically Unexplained Symptoms are just that - medically unexplained. People will present with symptoms that can be explained alongside those that cannot.

This is especially the case in those with long-term conditions - for example, diabetes; respiratory, vascular, musculoskeletal and neurological disorders, severe mental illness, depression & anxiety.

The professional needs to consider multiple modalities and approaches - personalise the plan - physical; medical; pharmacological; psychological (CBT; PDT); spiritual.

So what helps?

MUS is about the doctor having a number of hypotheses. Many patients with unexplained symptoms just need reassurance. Most people with MUS who see their GPs will improve without any specific treatment, particularly when their GP gives an explanation for symptoms that makes sense, removes any blame from the patient, and generates ideas about how to manage their symptoms.

Treat the Treatable

Advocate specific treatments that will help acute or chronic conditions - use pain ladders, control dyspnoea in COPD and angina in IHD. Remember to maximise treatment and symptom control of long-term conditions and pain, balancing treatment with potential adverse effects.

  • Consider altering medication - ask if it might be medication causing or aggravating the symptoms.
  • 30-60% of people in chronic pain have depression. Depression is four times more common in patients with low back pain (in primary care). Treating depression helps with pain, including arthritis. 
  • Screen for depression and treat appropriately.
  • CBT helps with MUS  and with chronic pain.  It also reduces fatigue in Chronic Fatigue Syndrome. 
  • Physiotherapy and exercise therapies help and should be encouraged.    
  • Communicate with other clinicians involved - consider a shared plan agreed with the patient and professionals.


Consultation techniques that help.

Connect 

  • Listen to the patient - their beliefs about the cause of their symptoms and their associated worries - ideas, concerns and expectations (ICE).
  • Ask open questions and let them tell their story fully their way: it's their experience; their family background; their worries.
  • Go back to the beginning of the complaint - right back, including previous health experiences. ("Drain the symptoms dry")
  • Focus on the impact of symptoms - how it affects them.
  • Acknowledge and validate the patient's sense of suffering - empathy; acknowledge it can be frightening.
  • Watch for signs that you are not "hearing" the patient; repetition, new symptoms, amplifying symptoms etc, and then try a different tack.
  • Knowing the patient and the context - or admitting you don't know these things - makes all the difference.

Summarise

  • Let the patient recap their view of the situation
  • Summarise what you think you have heard - being open about your uncertainty and willingness to check your understanding.
  • Use the patient's language to offer tangible explanations of what is causing the symptoms; be clear on what is not wrong and why.
  • Indicate how common such symptoms are.
  • Use narrative and metaphor -linking to the patient's own experience.
  • Offer the opportunity to link physical with psychosocial.
  • Use "scripts' - forms of words shown to be helpful **.
  • Show your interest - "I have spent a lot of time thinking about this."  "I would really like to learn more about you."

Hand Over

  • Share the action plan - around goals and functional improvement; suggest that the patient may monitor his or her symptoms to observe fluctuation
  • Agree that the goal is to restore function, as well as minimising symptoms.
  • Develop an individual personal health plan (similar to ones for other long term conditions); but not a pre-defined one
  • Reassure about long-term improvement and reversibility of symptoms, the ability of the body to recover.
  • Introduce the idea that emotions can aggravate physical symptoms, being careful not to imply you disbelieve them
  • Believe in patients and their ability to manage this; encourage them; build on their strengths.

Safety Net

  • Understand positive risk management and discuss that with the patient; share the uncertainty
  • Reassure the patient that they will always be taken seriously and any working hypothesis will be reassessed
  • Safety net in agreement with the patient;
  • Inform and document about "Red Flag" symptoms and signs. Agree actions if the situation changes and in what timescale and encourage continuity of care.
  • To address uncertainty in general practice on how to manage these symptoms, pathways of care should support alternatives to hospital referral - health trainers; well-being teams; peer supporters; links to IAPT pathways. Communication is essential.
  • Ensure doctor peer support to discuss thinking & management.

"Sorrow which finds no vent in tears, may make other organs weep."

Sir Henry Maudsley, (c. 1907)


Positive Risk Management

For MUS, good practice consensus recognises that not investigating may be best for the patient.

Investigations and Referrals

  • When referring - discuss the possible outcomes and their meanings; pre-empt normal tests results.
  • Be clear with the specialist what the question is
  • Copy patients into letters - agree content and goals.

Just be there

It DOESN'T help to...

  • Focus exclusively on a diagnosis (instead focus on the symptoms and their effect on functioning)
  • Dismiss the symptoms as normal (normalisation) without matching the explanation to the patient's concerns. Be careful not oversimplify the explanation to one life event (instead match your explanation using their own words)
  • Let patients think that you think something is wrong by investigating without sharing the likelihood of the negative result (instead share your uncertainty; discuss the possible negative result and its implications)
  • Treat symptoms with drugs rather than finding out whether the patient can tolerate them (instead have a discussion about therapeutic trials and side effects)
  • Assume you know what the patient wants (instead share decisions with the patients; listen to what they want carefully)
  • Judge the patient; be critical of their behaviours (instead acknowledge the importance of the patient's view and circumstances - they are important. Don't attribute ‘blame') 
  • Ignore or miss psychological cues (instead sensitively accept them and let the patient expand on them)
  • Enforce psychosocial explanations as this leads to defensiveness (instead allow time and encourage the patient to make those connections; it may take a few consultations - accept that.)
  • Let your anxiety or uncertainty take over (instead use word scripts to encourage a shared plan; Be open about your uncertainty yet reassuring that a serious cause is unlikely, but stress that you will keep an open mind.)
  • Give a diagnosis whatever (instead talk about functional conditions, and being able to manage symptoms)

Cautions and Uncertainties about this guidance

  • By highlighting MUS, doctors may use it as a diagnosis - this is best avoided; it is better to focus on the symptoms, the consequences and the functioning, not the name.
  • Setting up MUS teams? The risk is that teams concentrating on MUS may label patients and encourage silo management - it is better to encourage collaborative care and increase skills within primary care and specialist departments. Improve communication channels.
  • Reattribution training  - whilst appearing to increase GPs confidence and improve the Dr-Patient relationship, it is unclear if it improves patient outcomes.
  • The business case and medical offset costs - although it is likely that addressing MUS effectively will reduce both health and social costs, further research is required - the evidence that is available does show cost reduction.


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