Between Doubt and Diagnosis: Patient Experiences of Emotional Harm from Diagnostic Delays, 2026, McCleskey

Dolphin

Dolphin

Senior Member (Voting Rights)

Patient Education and Counseling​

Available online 1 April 2026, 109610


Between Doubt and Diagnosis: Patient Experiences of Emotional Harm from Diagnostic Delays​


Sara McCleskey a, Joachim Hero b, Carl Berdahl a c, Gordon Schiff d, Divvy Upadhyay e, Sangeeta C. Ahluwalia a

aRAND Santa Monica, 1776 Main Street, Los Angeles, CA 90401
bRAND Boston, 20 Park Plaza Suite 920, Boston, MA 02116
cCedars-Sinai Medical Center, 6500 Wilshire Blvd #733, Los Angeles, CA, 90048, United States
dHarvard Medical School, 75 Francis Street, Boston, MA 02115eGeisinger Health System, 100 North Academy Avenue, Danville PA 17822

Received 15 December 2025, Revised 23 March 2026, Accepted 25 March 2026, Available online 1 April 2026.



https://doi.org/10.1016/j.pec.2026.109610


Highlights​

  • •
    Patients view emotional harm as the most salient impact of delayed diagnosis
  • •
    Feeling dismissed by clinicians was common across both acute and chronic conditions
  • •
    Invalidation led to lasting mistrust and changes, namely reluctance, in healthcare-seeking behavior
  • •
    Validating patient experiences even in the face of diagnostic uncertainty may reduce harm from delayed diagnosis

Abstract​

Background​

Diagnostic error, including delayed diagnosis, is a significant threat to patient safety. While much research has focused on clinical and system-level contributors to diagnostic delay, less is known about patient perspectives, particularly regarding the emotional and psychological impacts.

Methods​

We conducted in-depth, narrative interviews with 23 patients who self-reported experiencing a delayed diagnosis in one of five medical conditions: preeclampsia, myocardial infarction, ankylosing spondylitis, sepsis, and lung cancer. Participants were recruited via online patient communities and advocacy organizations. Interviews explored diagnostic trajectories, barriers to timely diagnosis, and the emotional, financial, and physical impacts of delay. Transcripts were thematically coded and analyzed to identify key themes.

Results​

Patients described diverse diagnostic journeys, but the most salient theme involved the profound emotional impact of delayed diagnosis. Three major themes emerged: 1) nearly all participants reported feeling dismissed or not taken seriously by medical professionals, leading to frustration, anger, and self-doubt; 2) receiving a diagnosis brought relief and validation, affirming patients' experiences and enabling more informed decision-making; and 3) despite eventual validation, many patients experienced long-term emotional consequences of delayed diagnosis, most notably mistrust in the healthcare system and reluctance to seek future care. These impacts were observed across both acute and chronic conditions and among patients of different ages and backgrounds.

Conclusions​

The emotional and relational dimensions of delayed diagnosis are of primary importance to patients and can have lasting effects on trust and engagement with healthcare. Patient-centered strategies that prioritize validation, effective communication, and partnership in the diagnostic process are essential for reducing harm. Efforts to address diagnostic safety should incorporate patient perspectives to foster more empathetic and trustworthy healthcare systems.

Keywords​

Diagnostic delay
Patient experience
Qualitative research
Patient safety
Diagnostic error
 
The paper said:
Patients view emotional harm as the most salient impact of delayed diagnosis
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Wow, someone did not listen to a damn thing they heard and just put down what they wanted in the first place, uh? That's ridiculous. Justice delayed is justice denied. Delayed diagnosis is the same as denying justice, except with zero mechanism for correction, or even acknowledgement, certainly not redress.
The emotional and relational dimensions of delayed diagnosis are of primary importance to patients and can have lasting effects on trust and engagement with healthcare
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It is, in fact, entirely normal to not trust professionals who fail this way, especially as those consequences compound, get written in records that make those future mistakes more likely. This is an entirely rational response that has strong emotional aspects but those are secondary, and the usual consequence of framing it this way allows systems to perpetuate abuse while making farcical efforts at 'managing' those emotions. In fact, there is no other possible response to this.

They should think of this the same way as being wrongfully imprisoned for years. Yes, the emotional toll, but, no, it's not the most salient impact. Good grief, it's as if they forget that we are animals who need basic needs to be fulfilled, and that yoga ain't gonna do a damn thing for this.
 
Jonathan Edwards said:
What people want prioritising is safe effective care surely?
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And, equally, an admission if it cannot be provided, including the sense and decency to not further compound the problem with bullshit to avoid having to admit it.

The most important obligation on experts of any kind is to know the limits of their knowledge and stay within them.

Hope springs eternal.

Except, of course, it doesn't. It is a finite resource like all of them.
 
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