Researchers and patient advocates from the Monell Chemical Senses Center, Smell and Taste Association of North America (STANA), and Thomas Jefferson University came together during the COVID-19 pandemic to incorporate patient voices in efforts to prioritize research areas focused on improving care for people with smell and taste disorders.
To this end, in 2022 these collaborators conducted a survey and listening sessions with patients, caregivers, and family members affected by impaired smell or taste. They asked about their individual perceptions of the effectiveness of treatments, among other topics. Using an online questionnaire, over 5,800 people in the U.S. – from all 50 states and the District of Columbia – answered the team’s call to action. The survey results and critical areas for related research are published in Chemical Senses.
Overall their findings underscore the importance of conducting more large-scale, randomized clinical trials that include older participants. They also identified a need to parse results among anosmia, hyposmia, and parosmia to better understand the mechanisms underlying each diagnosis.
“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 team, which also includes researchers from San Diego State University, analyzed the characteristics that predicted whether treatment for smell or taste disorders was reported as effective (or not) for patients aged 18-24, 25-39, 40-60 and 60+ years. No treatments were highly effective. Collectively, the survey participants reported being treated with nasal steroids, oral steroids, zinc, nasal rinse, smell training, theophylline, platelet rich plasma, and Omega 3. The most consistent predictor of low effectiveness was age. The majority of those 40-60 and 60+ years old reported that nasal steroids, oral steroids, zinc, nasal rinse, and smell training were only slightly effective or not effective at all. However, many of these treatment strategies target cell regeneration and immune response, functions that can diminish with age. Only those under the age of 40 reported more-than-slight efficacy of steroids or smell training.