Stuffy nose is big SNOT-22 concern for CF patients with sinusitis

69 patients asked to rank importance of various symptoms in study

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A persistently stuffy nose is a big concern for people with cystic fibrosis (CF) who have chronic nose inflammation, but loss of smell isn’t as significant a worry, according to a new study that used the SinoNasal Outcome Test (SNOT-22).

“Nasal congestion and post-nasal discharge were top priorities reported by [people with CF and chronic nasal inflammation],” researchers wrote in the study “Patient perspectives on chronic rhinosinusitis in cystic fibrosis: Symptom prioritization in the era of highly effective modulator therapy,” which was published in the International Forum of Allergy and Rhinology.

Chronic inflammation in the nose and sinuses, known as rhinosinusitis or sinusitis, is a common complication of CF that can lead to symptoms including a stuffy or runny nose, cough, loss of smell, and pressure or pain in the face. In the study, scientists surveyed people with CF and chronic rhinosinusitis to better understand the relative importance of these different symptoms.

A total of 69 adults with CF, ages 20 through 63, completed a modified version of SNOT-22 that asked patients to rank the importance of various symptoms.

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Nose congestion, blockage rated as most problematic by patients

By a fairly wide margin and in all patient subgroups, the symptom rated as most problematic was congestion or blockage in the nose.

“Nasal blockage/congestion is the only symptom that was selected by the majority of participants and subgroups,” the researchers wrote, adding this finding “indicates the severe impact of nasal congestion on quality of life” for people living with CF.

Post-nasal discharge (runny nose) was rated as the second-most important symptom, followed by pain and pressure in the face. Although many of the patients had some amount of smell loss, they rated it comparatively low.

“Surprisingly, olfactory [smell] loss was not identified as a high priority symptom despite a large portion of this cohort having objective olfactory dysfunction,” the researchers wrote, noting this is “substantially different” from what’s been found in studies of people with chronic rhinosinusitis who don’t have CF.

“Understanding why smell is not a top priority in [people with rhinosinusitis in the context of CF] requires further investigation,” the scientists wrote.

About two-thirds of the patients in the study were taking CFTR modulators, a newly developed class of therapies that work to boost the function of the defective CFTR protein in people with CF caused by specific mutations. Most patients were taking the triple-combination modulator therapy Trikafta (ivacaftor/tezacaftor/elexacaftor).

Patients taking Trikafta were less likely to report that problems sleeping were a major issue, compared with patients not on modulator therapy. Other rhinosinusitis symptoms were prioritized similarly, regardless of modulator treatment.

About one-third of the patients elected to undergo nasal surgery to help manage rhinosinusitis. Compared to patients who were treated with regular medical management only, patients who opted for surgery were more likely to rate sleep problems, as well as fatigue, concentration, and productivity concerns as issues related to their rhinosinusitis. This finding suggests that helping patients sleep and get mental health support may help reduce the need for nasal surgeries, the researchers said.

“If sleep and psychological dysfunction-related symptoms are primary motivators for patients electing to pursue surgical intervention, the ability to target these specific domains via other interventions may alleviate the need for surgical intervention,” they wrote.

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The team noted overall CFTR modulator therapy was linked to fewer sleep issues, and consistently, patients taking Trikafta were less likely to choose surgery.

“Building on our earlier findings that taking [Trikafta] is associated with less need to pursue sinus surgery, this study supports further investigation into [modulator therapies’] potential to address sleep concerns and circumvent surgical intervention in CF-related [chronic rhinosinusitis] treatment,” the scientists wrote.

The team stressed a need for more studies to specifically assess how modulator therapy affects patients’ sleep and also to develop other forms of support that all patients can benefit from since some aren’t eligible for modulator treatments.