What Is a Cascade of Care?

Dr. Meredith Niess discussed a troubling case in an NPR story. A man was scheduled for hernia surgery. A preoperative X-ray was ordered despite the paucity of evidence of whether the X-ray was needed. The X-ray suggested a mass. The patient was worried about cancer.

Cancer was ruled out. “In fact, a follow-up CT scan showed a clean lung but picked up another suspicious ‘something’ in the patient’s adrenal gland,” stated Niess. The second CT scan was negative.

Niess used the case “as an example of what researchers call a ‘cascade of care’—a seemingly unstoppable series of medical tests or procedures.”

The Classic Example: When a Routine X-Ray Triggers Unnecessary Tests

This cascade effect has been described before. “With regard to medical technology, the term refers to a chain of events initiated by an unnecessary test, an unexpected result, or patient or physician anxiety, which results in ill-advised tests or treatments that may cause avoidable adverse effects and/or morbidity,” wrote Deyo.

Deyo cited an example of a cascade effect in his review from the professionals who coined the term.

Mold & Stein offered the story of a patient admitted to the hospital for elective repair of an inguinal hernia. “He had a history of coronary disease with very mild arterial narrowing on a previous cardiac catheterization. Anxious about his cardiac status, the surgeons requested a preoperative cardiology consultation. Perhaps uncertain about his own clinical judgment, the cardiologist suggested obtaining an exercise tolerance test.

This was delayed for six hours while the patient waited outside the test room, during which time he became anxious, agitated, and angry, and had some mild chest discomfort. Because of the chest discomfort, the test was not done and the patient was transferred to a telemetry unit. There he became more anxious and agitated, was found to have some electrocardiogram changes, and received medications.

He underwent another cardiac catheterization, which actually showed slight improvement since his previous test. At that point, the hernia repair could not be performed because of a full operating room schedule, and the primary physician was left to try to reassure the patient that he was in no danger. The procedure had to be delayed for two weeks.

In this example, the chain of events seemed to be fueled by physician anxiety, and it snowballed with the addition of patient anxiety.”

How Lyme Disease Triggers a Different Kind of Cascade

In some cases, Lyme disease may go undiagnosed and with its broad array of symptoms and presentations can trigger a cascade of costly, unnecessary tests.

Unlike the examples above where unnecessary initial tests trigger cascades, Lyme disease creates cascades through missed diagnosis. Patients present with fatigue, cognitive dysfunction, joint pain, neurologic symptoms, or autonomic dysfunction. Without recognition of tick-borne illness, they undergo extensive workups for other conditions.

MRI scans for headaches and cognitive symptoms. Rheumatology evaluations for joint pain. Cardiac workups for palpitations and chest discomfort. Gastroenterology testing for digestive complaints. Psychiatric evaluations for anxiety and depression.

Each specialty orders tests within their domain. Each test comes back negative or nonspecific. Yet symptoms persist. More specialists are consulted. More tests are ordered. The cascade continues—not because of an unnecessary initial test, but because the correct diagnosis is never considered.

The Cost of Delayed Diagnosis

Misdiagnosis and delayed diagnosis have been described in a large Lyme disease database. “More than half (51%) reported that it took them more than three years to be diagnosed and roughly the same proportion (54%) saw five or more clinicians before diagnosis. These diagnostic delays occurred despite the fact that 45% of participants reported early symptoms of Lyme disease within days to weeks of exposure,” wrote Johnson et al.

Others with recurrent Lyme disease and Lyme encephalopathy have waited an average of 2 years before receiving treatment.

These delays can have life-long repercussions. Once the Borrelia burgdorferi infection disseminates, symptoms can become more problematic and treatment more difficult.

The financial costs are staggering. Multiple specialist visits. Repeated imaging studies. Laboratory panels for autoimmune conditions, endocrine disorders, infectious diseases. Emergency department visits for acute symptom flares. Each negative test result should prompt reconsideration of the diagnosis—but too often, it simply triggers another referral.

The emotional toll compounds the medical cascade. Patients are told their symptoms are psychosomatic. They’re referred to psychiatry when organic illness goes unrecognized. They doubt themselves. They lose time at work, relationships, and quality of life—all while undergoing tests that will never reveal the underlying tick-borne infection.

Why Lyme Disease Creates These Cascades

Several factors contribute to the diagnostic cascade in Lyme disease:

Symptom Diversity – Lyme disease affects multiple organ systems simultaneously, leading to consultations across specialties rather than integrated diagnosis.

Test Limitations – Standard Lyme testing frequently produces false negatives, particularly in early disease. When initial Lyme tests are negative, the diagnosis is often abandoned rather than pursued clinically.

Lack of Clinical Suspicion – Many clinicians don’t consider Lyme disease outside of endemic areas or without tick bite recall, despite evidence that patients frequently don’t remember tick exposure.

Specialist Silos – Each specialist evaluates symptoms within their domain without recognizing the pattern that would suggest tick-borne illness.

The cascade continues until a clinician familiar with Lyme disease recognizes the pattern—or until the patient finds their way to a Lyme-literate physician, often years into their illness.

Frequently Asked Questions

What is a cascade of care in medicine?
A cascade of care is a chain of medical tests or procedures triggered by an unnecessary test, an unexpected result, or physician/patient anxiety. In Lyme disease, cascades occur when the correct diagnosis is missed and patients undergo extensive testing for other conditions.

How does Lyme disease trigger unnecessary tests?
Undiagnosed Lyme disease presents with symptoms affecting multiple organ systems. Without recognition of tick-borne illness, patients are referred to multiple specialists who each order tests within their domain, creating costly cascades of evaluation.

How long does it typically take to diagnose Lyme disease?
Research shows that 51% of Lyme disease patients report it took more than three years to be diagnosed, and 54% saw five or more clinicians before diagnosis—despite 45% having early symptoms within days to weeks of exposure.

Why don’t doctors consider Lyme disease earlier?
Many clinicians don’t suspect Lyme disease without tick bite recall or outside endemic areas. Standard tests frequently produce false negatives. Symptoms affecting multiple systems lead to specialist referrals rather than integrated diagnosis.

How can the cascade of unnecessary tests be stopped?
Early consideration of tick-borne illness in patients with multi-system symptoms, particularly in those with exposure history or unexplained chronic illness. Clinical diagnosis should not be abandoned based on negative serology alone.

Clinical Takeaway

The cascade of care concept typically describes how unnecessary initial tests trigger chains of subsequent procedures. But Lyme disease creates a different, equally costly cascade—one driven by missed diagnosis rather than unnecessary testing. When tick-borne illness goes unrecognized, patients enter a medical maze. They see multiple specialists. Each orders tests within their domain. Rheumatology evaluates joint pain. Neurology investigates headaches and cognitive symptoms. Cardiology works up palpitations. Gastroenterology addresses digestive complaints. Each workup comes back negative or nonspecific. Yet symptoms persist and worsen. More than half of Lyme disease patients report seeing five or more clinicians over more than three years before diagnosis—despite nearly half experiencing early symptoms soon after exposure. This represents a profound failure of clinical pattern recognition. The cascade continues not because tests are unnecessary, but because the right diagnosis is never considered. Breaking this cascade requires clinical suspicion of tick-borne illness in patients with multi-system symptoms, particularly when standard workups repeatedly fail to explain illness. Once Borrelia burgdorferi infection disseminates, treatment becomes more difficult and recovery less certain. The most effective intervention is early recognition—before the cascade begins.