Clinician toolkit: Welcoming patients with prolonged symptoms into your practice

At first, caring for patients with complex medical conditions might seem overwhelming for a busy clinician. However, an empathetic evaluation can frame the visit as one that offers the patient hope and the clinician a sense of fulfillment.

Patients are suffering and looking for help

It is important to be open and welcoming to patients experiencing prolonged symptoms. Some clinicians refuse to see patients who have prolonged symptoms and concerns about Lyme disease (Chen A, Felt-Lisk S. Unpublished data. August 11, 2022). However, these patients are suffering and are looking for help from trusted experts.

Patients need empathetic care and reliable information

Providing empathetic care and a comprehensive evaluation, offering open communication about what is known and not known about the cause of their symptoms, and working with the patient to address their concerns and symptoms is the best approach (Chen A, Felt-Lisk S. Unpublished data. August 11, 2022).

• Validate the patient’s experience and symptoms
• Engage in empathetic care
• Be cognizant of the limitations of biomedicalization
• Maintain diagnostic humility as there are limits to current medical knowledge

It is important to develop a relationship built on mutual trust. Even before a patient comes into the office, sending them information on how to prepare for the appointment (PDF) and what to expect (PDF) shows empathy. Take the time to perform a comprehensive history and physical, including asking the patient why they think they have Lyme disease, the timeline of their symptoms (PDF) as well as alleviating/exacerbating factors, and their journey through the health care system (Chen A, Felt-Lisk S. Unpublished data. August 11, 2022). Listening to the words that patients use can give you clues into their feelings and needs. 

Obtaining prior records is also important to understand what laboratory testing has been done previously—including non-FDA-cleared Lyme disease tests. This can also show you whether other diagnoses have been considered and ruled out (Chen A, Felt-Lisk S. Unpublished data. August 11, 2022), any prior treatments (both pharmacologic and non-pharmacologic) and responses to that treatment. Asking patients to bring these records with them will allow for a complete review and allow for the clinician and patient to discuss them at a later visit. These records should include the patient’s own symptom diaries (PDF), stress diaries (PDF) and health goals (PDF); encourage patients to keep track of their symptoms if they don’t already. A thorough understanding of any pre-existing or current medical conditions, including mental health diagnoses, is also very helpful. Each of these, and other findings, can inform next steps (Chen A, Felt-Lisk S. Unpublished data. August 11, 2022).

A thorough history can reveal key pieces of information, such as whether the patient ever lived in or visited an area endemic for Lyme disease, had a known tick bite or typical symptoms of Lyme disease (e.g., erythema migrans) and whether the patient ever received treatment for Lyme disease (Chen A, Felt-Lisk S. Unpublished data. August 11, 2022). The next section provides other diagnoses to consider.

Conducting these histories with empathy is important (PDF), as patients experiencing prolonged symptoms have often seen many health care professionals in their journey. It is essential to actively listen to the patient’s story and validate their symptoms through statements such as “I believe you.”  

Being aware of the limitations of biomedicalization is important, as many patients may not have a nameable diagnosis, even after a thorough medical evaluation. Biomedicalization is the process by which clinicians take a patient’s subjective complaints of illness and translate that into a diagnosable disease. While this works for some complaints, like a sore throat being diagnosed as a Streptococcus infection, it does not always work for others, such as chronic fatigue (Chen A, Felt-Lisk S. Unpublished data. August 11, 2022).

The following videos explain more about biomedicalization, how it is ingrained in clinician training, and how important it is to understand where it can steer clinicians in the wrong direction:

• Overview of Biomedicalization
• Power in Diagnosis
• Understanding Clinician Bias 
• Overcoming Bias

This effort is supported through a cooperative agreement (grant number NU50CK000597). The U.S. Centers for Disease Control and Prevention is an agency within the Department of Health and Human Services (HHS). The contents of this course do not necessarily represent the policy of CDC or HHS and should not be considered an endorsement by the Federal Government.

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