Many of us have experienced this at the doctor’s office, clinic, or hospital. We tell our doctors or healthcare providers how we feel and why we think we are sick or in pain, and what often happens? They ignore us or refuse to take seriously our perceptions about our bodies.

According to a new study by Ph.D. candidate Allyson Bontempo, while scholars who are studying and documenting this phenomenon are aware that healthcare providers do dismiss (invalidate) their patient’s accounts of their illnesses often enough that it is a serious and growing problem, they are facing their own challenge while researching it: they lack a term to describe it.

Lacking a precise, consistent term to use when describing “the invalidation of patient symptoms by healthcare providers” is in itself a serious problem, Bontempo said, because it is “hindering the advancement of knowledge in this important and growing area and has likely prevented it from reaching its full potential.”

Patients who have acute or progressive illnesses, such as infections or cancer, are particularly vulnerable to developing complications if their descriptions of their symptoms are dismissed by healthcare providers, Bontempo, said, which is especially alarming during the pandemic.

To demonstrate how problematic the current vocabulary is, Bontempo said after reviewing 33 scholarly articles describing the invalidation of patient symptoms by healthcare providers, she found 25 different terms used to describe it.

In her paper “The Need for a Standardized Conceptual Term to Describe Invalidation of Patient Symptoms,” published by the Journal of Health Psychology, Bontempo wrote if researchers could use such a standardized term, it will help scholars “acquire more knowledge about what’s happening and the direct and indirect effects on patients,” and that, in turn, will help ensure the problem is addressed. In addition, Bontempo said, the invalidation of patient symptoms can have devastating results for patients, so it is critically important that a solution is found.

Patients who have acute or progressive illnesses, such as infections or cancer, are particularly vulnerable to developing complications if their descriptions of their symptoms are dismissed by healthcare providers, Bontempo, said, which is especially alarming during the pandemic.

“Take COVID-19* or sepsis as examples,” Bontempo said. “If a patient’s symptoms are not taken seriously or are ignored, the patient is likely not going to receive a diagnosis, in which case they won’t be getting any kind of treatment. There are also stories of this happening among patients with cancer. Although not an infection, we know that cancer requires a prompt diagnosis as well as treatment, but the more time that goes by without being diagnosed and consequently treated, the higher the chances of the cancer progressing in stage. And certainly, when patients’ symptoms are not taken seriously, and quite possibly more so with repeated encounters of this kind, they may stop seeking care.”

In the paper, Bontempo also documents increasing evidence that patients whose symptoms are ignored by healthcare providers can develop depression, and that women are disproportionality impacted. “We know from studies on diagnosis and detection of heart disease for women versus men and from studies on how long it takes for women versus men to get prescribed pain medication in the emergency department, for example, that this exists. It would be nice to see some comparative studies of patients with the same diagnosis in terms of their time to diagnosis and also experiences with invalidation in other patient populations to really solidify this.”

To demonstrate how problematic the current vocabulary is, Bontempo said after reviewing 33 scholarly articles describing the invalidation of patient symptoms by healthcare providers, she found 25 different terms used to describe it.

As next steps in her research, Bontempo said she is working on developing ways to capture more statistical evidence. One is a “self-report measurement instrument” that will enable researchers to “measure the degree to which invalidation is occurring and to be able to correlate it with mental and physical health outcomes.”

She began working on a self-report scale two years ago, Bontempo said, where patients rated the degree to which they sensed their clinician dismissed, invalidated, ignored, etc., their symptoms, and she plans to continue the project as a part of her doctoral dissertation.

“If we can show through data analytic methods that the scale is valid (i.e., is measuring the construct—invalidation—that we want to measure) and is reliable (i.e., is consistent in its measurement of this invalidation),” Bontempo said, “we can start using this to see if there’s a statistical relationship between invalidation of symptoms and, for example, depression, avoidance of the healthcare system, delayed diagnosis, and even physical health outcomes. Demonstrating these relationships should help convince clinicians and policymakers, for example, that this is an important area of study and intervention.”

While Bontempo and other scholars work toward a solution, Bontempo said patients can help themselves by self-advocating. “Self-advocacy really seems the best and perhaps only option in this case,” Bontempo said. “In the work that I have done with patients with endometriosis and in other published literature with other patient populations, this advocacy is often framed as ‘forced.’ Such as, if they want their diagnosis, they don’t really have any other choice but to self-advocate.”

Another good tactic is for patients to find a new doctor, Bontempo said. “Trust is a growing area of research in patient-provider communication, and if a clinician doesn’t trust what a patient is reporting to them concerning their bodily experiences, how is that patient then supposed to trust that clinician? Trust is a two-way street and has a powerful effect on health outcomes. There is a great article written on this titled, ‘Feeling Dismissed and Ignored by your Doctor? Do This.’ I recommend readers visit this article for more in-depth advice.”

Bontempo said it might also help patients to self-advocate by sharing their experiences and concerns with others in public forums, such as posting online reviews of healthcare providers, or completing patient satisfaction surveys, or joining Facebook groups where they can ask other patients for recommendations for good clinicians and read about negative experiences others have had with certain clinicians. 

However, Bontempo warns, placing the burden on patients to self-advocate to be heard and taken seriously by their healthcare providers is not a sustainable solution. “Although self-advocacy is increasingly encouraged among patients, especially as patient-centered care becomes more prominent,” Bontempo said, “we must also remember that managing an illness—diagnosed or undiagnosed—can be emotionally, physically, and cognitively draining, so such self-advocacy efforts can really tax already taxed patients.”

*See this recent thread on Twitter.

Discover more about the Ph.D. Program on the Rutgers School of Communication and Information website.