By Stephanie Feuer

A significant survey involving  more than 5,800 Americans affected by smell and taste disorders emphasizes the critical role of patient participation in advancing olfactory research and clinical practice. The study, conducted by researchers from the Monell Chemical Senses Center, Smell and Taste Association of North America (STANA), and Thomas Jefferson University, was published in the latest issue of the journal, Chemical Senses.

The survey, which spanned all 50 states and the District of Columbia, revealed crucial insights into patient perceptions of treatment effectiveness and quality of life impacts. Notably, the findings emphasized the need for age-inclusive clinical trials and more nuanced research approaches that distinguish between different types of smell disorders.

 “Patient voices sound the urgency for fundamental research on what underlies sensory disorders and how that can be translated into new and better treatments,” said senior author Nancy E. Rawson, PhD, Monell Executive Vice President & Chief Impact Officer.

The study uncovered significant age-related differences in the effectiveness of treatments. Older adults reported lower effectiveness for common interventions like nasal steroids and smell training. Only those under the age of 40 reported more-than-slight efficacy of steroids or smell training.

People with complete loss of smell (anosmia) rated the training less effective than those with a partial loss (hyposmia), and those with a distorted sense of smell (parosmia) rated nasal steroids less effective than those with hyposmia. It is notable that No treatments were highly effective.

Patient feedback, in the form of small group listening sessions, revealed a pressing need for better diagnostic tools and increased awareness among healthcare professionals across various disciplines. Survey participants expressed frustration with current treatment strategies and called for innovative approaches to address their conditions.

“From the patient survey and listening sessions, we learned that patients have an important and unique perspective based on their own lived experiences that researchers and clinicians should consider,” said co-author Katie Boateng, STANA President. “In particular, patients want to be involved in identifying treatments that directly address impacts on their quality of life.”

 The researchers proposed several priorities for future studies, including developing partnerships between patients, clinicians, and scientists to align research goals, improving accessibility to standardized diagnostic methods, and enhancing healthcare professional training in managing smell and taste disorders. They also surmise that olfactory impairment associated with long COVID could lead to a significant rise in AD incidence, making clinical research on new treatments for smell loss a key priority.