In the second of our two-part CPD series, GP partner and educator Dr Ed Pooley discusses how to provide ongoing support for people with medically unexplained symptoms. Read the full article on Pulse 365 today.
Medically unexplained symptoms (MUS) is the term given to symptoms and symptom clusters where we have incomplete information about the aetiology and pathology of those symptoms, or where the symptoms may be psychological in origin (in that they do not fit with a current or expected biological explanation).
In this, the second of a two-part series on managing patients with MUS, we explore the nuances of communicating the diagnostic label of MUS, issues that can arise with patient expectations and fears of pathology, uncertainty and media representations of MUS. The challenges that arise with MUS are myriad and relate to both clinician and patient factors – these are outlined in the sections below, together with strategies for mitigating their impact.
Is it helpful to give a diagnosis of MUS?
We can arrive at a diagnosis of MUS through several routes; for some patients, the presentation will be more overt, for example, irritable bowel syndrome or fibromyalgia, whereas for other patients, there may have been tests or specialist assessment that will have led to the exclusion of other clinical presentations, for example, functional neurological disorder.
To judge whether it is helpful to provide a diagnosis of MUS, it is important to consider how the patient has evaluated their symptoms and what ideas, concerns, and expectations they have.
If we take the example of chronic limb weakness, a patient is likely to have asked themselves several questions: Why has this happened? What has caused this? Is this serious? Will I regain normal movement in my limb? If we bring these thought processes and questions into the open, we can assess whether a diagnosis is going to be helpful or unhelpful in assisting the patient’s evaluation and acceptance of their symptoms. For some, patients may be able to tolerate the uncertainty if there is a method for symptom amelioration.
The scenario can become more complex, however, in the situation where the patient does not believe that all appropriate alternatives have been excluded (for example, by a specific type of scan, or through specialist assessment) or where they may feel ‘fobbed off’ and that a label has been applied without thorough evaluation. This experience can be magnified if a patient perceives their age, gender, or past medical history to be negatively influencing the diagnostic process, such as if a patient is told that all the symptoms they experience are related to their history of anxiety or fibromyalgia, or age. Clinicians need to be clear about the thought processes they are working through, so that decision making is overt rather than something that happens in the background.
How do we guide patients through online and offline forums that may influence their understanding of MUS and their approach to clinical encounters?
Part of the answer to this relates to the previous experiences of the patient with clinical encounters and part relates to how well the clinician can sit with the patient’s assessment of them as a practitioner.
It can be challenging in busy clinics when you feel on the back foot in relation to establishing a diagnosis, have few options for treatment, are holding a degree of uncertainty and feel under scrutiny from a patient who has read all about their specific symptoms on online forums or spoken to someone who has reported their expertise in managing or attributing the patient’s symptoms. These negative dynamics can be magnified by reports of doctors missing or delaying diagnoses of similar symptoms which have ultimately turned out to be significant or life limiting.
My approach with patients who have MUS is to signpost to high-quality sources of information where possible, for example the FND Guide (formerly called neurosymptoms.org) or to local support groups for their specific pattern of symptoms. I will be clear with them about my confidence level of the diagnosis for now, the situations that would change that position, and how there are many forums offering support for individuals who may have experienced discrimination, difficulty with diagnosis or problems with accepting the impact of the diagnosis or their symptoms on their life, and the need for many patients to vent and grieve the loss certainty that often accompanies a diagnosis of MUS. As such, some forums can be unhelpful for patients and may be destabilising.
How can we explain the importance of avoiding cycles of investigation and referral?
A common reaction from patients to having a diagnosis of MUS is to try to find methods of reducing uncertainty, either relating to the diagnosis (and trying to ensure that more serious diagnoses, such as cancer, or rarer diagnoses, such as multiple sclerosis, have been adequately excluded) or relating to symptom management – often with the assumption that once the diagnosis is correct, the management will be more effective (which isn’t always true).
To reduce this uncertainty, patients are often keen to seek scans, tests and specialist or secondary opinions. The evidence, as outlined in part one of this series, however, is that this process is often unnecessary and can worsen outcomes. In addition, where a clinician may also be uncertain, they may agree to tests and referrals to reduce their own degree of stress, with the outcome that the interaction between patient and doctor becomes more transactional and less relational. Because of this relational-transactional shift, trust levels can reduce, and patient and doctor frustrations increase to the detriment of the interaction.
If you are making a diagnosis of MUS, be clear about your evidence and the symptoms that support this diagnosis and reduce the likelihood of an alternative explanation. Avoid shutting down discussion of tests and referrals but, instead, focus on why these are being requested.
For example, is a test being requested because the patient does not accept that their symptom could have a psychological explanation, and that there is no physical pathology as the predominant cause? Fatigue is a common example of this, where the reality is that the symptom is usually multifactorial, being the result of low level chronic stress, poor sleep, reduced exercise tolerance and mild reductions in iron or vitamin D due to alterations in diet.
It is important to document which tests, scans and referrals have been made and when, in order that a ‘quick-look’ entry in the record can assist colleagues who are meeting the patient for the first time and who may suggest a test that has already been done, or a relatively rarer diagnosis encapsulating the symptoms that has already been excluded. It is important to recognise that doctors enjoy solving clinical presentations and that in the attempt to find the answer they may, inadvertently, open up a diagnostic can of worms or reinvent the wheel.
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Dr Edward Pooley is a GP and communications trainer in Nottingham
