Clinicians supporting cancer patients with taste loss need educational materials and training

AMHERST, Mass. – While an overwhelming majority of cancer patients experience taste disruption from their disease or treatment, they have consistently reported a lack of support from their doctors about this troubling side effect, according to research.

A new study by the University of Massachusetts Amherst, focusing for the first time on the issue from the cancer clinicians’ point of view, reveals not a lack of concern about their patients’ taste loss but a lack of access to educational materials, diagnostic tools and strategies to help their patients.

“The most surprising and important finding was that the clinicians really do value their patients’ symptoms,” says sensory expert Alissa Nolden, assistant professor of food science and senior author of the research published May 24 in the journal Supportive Care in Cancer. “That was not expected because all of the previous literature described taste changes to be a minor symptom compared to fighting cancer.”

Nolden and lead author Lakmani Tharaka Galaniha, a Ph.D. candidate in food science, developed an online survey completed by 67 clinicians who treat cancer patients – mostly ear, nose and throat specialists and speech pathologists – between January 2021 and February 2022.

“We had three aims,” Galaniha says. “We were testing their knowledge about taste, and we also wanted to learn about their experiences with educational materials and their perspective on taste alterations in cancer patients.”

Loss of or change to taste perception has a range of physical and psychosocial impacts on cancer patients, the paper points out. It can affect dietary intake and nutrition, treatment outcome and quality of life. Taste disruption can cause “many negative emotions, including disappointment, frustration, and sadness, and interferes with [patients’] daily rituals, especially around dining events and roles with their family members,” the paper states.

Among the survey findings:

• About half the participant clinicians were familiar with specific taste disorder classifications but only 15.4% correctly defined both taste and flavor. “Clinicians are using the terms taste and flavor interchangeably, but they are not the same,” Galaniha says. (Taste is what the sensory cells on taste buds in your mouth perceive, while flavor includes both taste and aroma, or the sense of smell.)
   
• Close to 60% of the clinicians reported not having access to adequate information to help their patients manage their taste dysfunction. “Addressing these inequities in education and improving the standard of care is the first step in improving the care for cancer patients suffering from altered taste function.”
   
• Some two-thirds of participants reported routinely asking patients about their taste function.
   
• Most clinicians reported using self-assessment tools to determine their patients’ taste function. “Even though self-assessment is convenient and easily accessible, most questionnaires do not differentiate between taste and flavor, raising concerns as to whether these questions accurately capture patient experiences,” the paper states.

The researchers note that the pandemic has raised awareness about taste and smell dysfunction because they were common symptoms of people suffering from COVID-19. That has led to efforts to develop questionnaires that assess both the quantity and quality of self-reported perception of chemosensory modalities in smell, taste and chemesthesis (oral irritation).

The research identifies a need for standardized terminology, access to educational materials online and validated taste assessment methods that can be easily used in clinical settings.  

“Overall, improving clinician training and knowledge regarding taste loss and reducing the communication barrier regarding taste will help patients feel supported and may lead to an improvement in their nutritional status and quality of life,” the paper concludes.

Contacts: 

Alissa Nolden, [email protected]

Lakmani Tharaka Galaniha, [email protected]

Patty Shillington, [email protected], 305-606-9909