Dismissing symptoms, lack of care may delay Cushing’s diagnosis
'Stereotyped assumptions about weight gain' impact treatment by providers
Lack of patient-centered care, dismissing symptoms, and negative experiences related to changes in weight may delay recognizing and diagnosing Cushing’s syndrome by primary healthcare providers, a study that gathered the experiences and perceptions of seven women in Canada suggests.
“Overall, the results of our study highlight the importance of patient-centered care. Participants reported miscommunication, invalidation, weight stigma … all of which are contrary to the goals of patient-centered communication,” the researchers wrote. The study, “The healthcare system did fail me repeatedly”: a qualitative study on experiences of healthcare among Canadian women with Cushing’s syndrome,” was published in BMC Primary Care.
Cushing’s syndrome comprises a series of conditions marked by high levels of cortisol, a hormone normally produced by the adrenal glands. Cushing’s disease, one of its most common forms, is caused by a tumor in the pituitary gland that produces large amounts of adrenocorticotropic hormone (ACTH), triggering excessive cortisol production. Less frequently, the syndrome is caused by ACTH-producing tumors elsewhere in the body, called ectopic Cushing’s syndrome, or it may be ACTH-independent and is caused by tumors in the adrenal glands.
“Although researchers have documented the clinical presentation of Cushing’s, approaches to working with patients with a possible diagnosis, as well as treatment approaches and outcomes, there is an absence of research on the lived experience of patients with Cushing’s in healthcare,” the researchers wrote.
The patient experience with Cushing’s
Here, researchers interviewed seven women to learn more about the experiences of women in Canada with Cushing’s. The women had a mean age of 44 and six had ACTH-dependent Cushing’s — five with Cushing’s disease and one with ectopic Cushing’s (ACTH-producing lung carcinoma) — and one had ACTH-independent Cushing’s (adrenal tumor). All reported having clinically significant high 24-hour urine-free cortisol levels, which contributed to their diagnosis.
The women were asked about the path to their diagnosis, and their healthcare experiences and perceptions about the effects of the disease before and after diagnosis. Two predominant content areas emerged: the negative experiences in healthcare and body image issues associated with Cushing’s.
The women said there was a lack of patient-centered care before their diagnosis, either due to miscommunication with their primary care provider or because providers downplayed or dismissed their symptoms, which could have contributed to a delayed diagnosis.
In general, the women felt they weren’t receiving the care they expected from their primary care provider. One woman said that even after a 24-hour urine-free cortisol test showed elevated levels, the doctor insisted she was doing the test wrong. Other symptoms, such as weight gain, swollen hands and feet, or skin sensitivity, were dismissed by providers.
The patients also said their symptoms were misunderstood. This was the result of difficulty communicating with providers that led to misperceptions that weren’t clarified with diagnosis and treatment. Examples included patients not associating symptoms like weight gain and stretch marks with Cushing’s, or believing weight gain, stress, anxiety, or excessive work was the cause of their symptoms.
The women also said they were treated differently after gaining weight.
“For patients with endogenous Cushing’s, weight stigma may be a contributing factor in the consistently reported delays to diagnosis, due to stereotyped assumptions about weight gain coupled with a lack of knowledge about Cushing’s, among providers as well as patients,” wrote the researchers, who said the findings “highlight the potential harm of weight- and appearance-focused sociocultural discourses on Cushing’s-related healthcare.”
The women did report a sense of relief and validation, as well as a positive healthcare experience with treatment after they were diagnosed.
The researchers said more research involving more people would help to explain the “potential impact of provider miscommunication, medical gaslighting, and weight stigma on the experiences of patients with Cushing’s throughout the diagnostic and treatment process.”
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