Incidence and Impact of Misdiagnosis in Diffuse Large B-Cell Lymphoma (DLBCL): An Analysis From Lymphoma Coalition’s 2024 Global Patient Survey on Lymphomas & CLL
Authors: :Lorna Warwick1 Shawn Sajkowski1 Kathryn Perry1 Mavis Lui1 Natacha Bolaños2
1 Lymphoma Coalition, Etobicoke, Canada, 2 Lymphoma Coalition, Madrid, Spain
Background
Diffuse large B-cell lymphoma (DLBCL) is the most prevalent B-cell lymphoma and due to its aggressive nature, a
correct and timely diagnosis is critical to optimise
prognosis. However, an accurate diagnosis remains challenging as symptoms can overlap
with other unrelated illnesses.
Aim
To examine the incidence of misdiagnosis DLBCL and its impact on diagnostic delays and healthcare utilisation
across five European countries; Belgium, Bulgaria, France, Italy and the United Kingdom (UK).
Method
A 2024 cross-sectional, anonymous online global survey captured the lived experience s of people
affected by lymphomas and CLL. People with lived experience of DLBCL (PWLE-DLBCL) reported whether
they received an incorrect diagnosis prior to confirmation of DLBCL, the duration from symptom onset
to diagnosis, and the number of medical consultations required. Data from five European
countries, Belgium (n=69), Bulgaria (n=62), France (n=153), Italy (n=41) and
the UK (n=177) were prioritised for further analysis.
Results
Globally, 1,354 PWLE-DLBCL responded to questions regarding prior misdiagnosis. Of these, 45% were
misdiagnosed at least once. PWLE-DLBCL who were initially misdiagnosed experienced prolonged
diagnostic timelines: 31% waited 3 months or more for a correct diagnosis compared to 14% who were
diagnosed correctly. Furthermore, 69% of misdiagnosed PWLE-DLBCL had 3 or more medical
consultations regarding symptoms versus only 35% who were initially diagnosed correctly.
Within countries examined in Europe, the UK reported the highest rate of DLBCL misdiagnosis (56%,
n=99) followed by Bulgaria (48%, n=30), Italy (46%, n=19), Belgium (44%, n=30) and France (43%, n=65).
Across all five countries, the misdiagnosed cohort had a higher percentage of patients who waited 3
months or more for a lymphoma diagnosis as well as a higher proportion who had 3 or more clinical
visits before receiving their correct diagnosis (Table 1). Though highly varied, the most common
misdiagnosis was another type of cancer (different hematological malignancy or solid tumour).
Conclusions
Our findings demonstrate that nearly half of PWLE-DLBCL experience an initial misdiagnosis, leading to
significant diagnostic delays and increased healthcare utilisation for this population. Within Europe, DLBCL
misdiagnosis appeared particularly pronounced in the UK. Misdiagnoses and delays impose significant clinical,
psychological, and system-level burdens by postponing potentially life-saving treatment for patients, increasing
the volume of avoidable clinical encounters on the healthcare system and placing amplified stress on patients
and care partners. It is imperative that healthcare practitioners maintain a high index of clinical suspicion for
lymphoma to expedite the appropriate diagnostic testing and treatment pathways as well
as reduce excess pressure on healthcare resources and ultimately improve outcomes for patients with DLBCL.