Life with Nasal Polyps

This study included several components:

• Social listening
• Peer-to-peer conversations with online patient community members
• Survey of patients and caregivers
• Interviews with patients and caregivers

The study sought to better understand current challenges and barriers to timely diagnosis, quality medical care, effective treatments, and access to resources for nasal polyps. The objectives of the study were to:

• Understand the current state of care for nasal polyps in the U.S.
• Understand the patient journey for nasal polyps
• Identify areas of unmet needs for patients and caregivers

The Life with Nasal Polyps report uses insights from a patient/caregiver survey (n=112) to identify and provide opportunities for improving nasal polyp care in the United States.

Many patients experience delays in diagnosis for CRSwNP, leading to delayed symptom relief, clinical care, and treatment.

• The majority (53%) of patients said it took more than one year to receive a diagnosis after first experiencing symptoms, including one in eight (12%) who said it took more than 10 years to get diagnosed.
• The biggest challenge to getting a diagnosis among this study group was difficulty in distinguishing CRSwNP that it was hard to tell if symptoms with were not just bad allergies or asthma.
• Other challenges to diagnosis include not recognizing their symptoms as a sign of a chronic condition, doctor not realizing there was a problem, and having trouble getting the necessary testing for diagnosis. One significant factor that can delay diagnosis is that CRSwNP symptoms mimic those with other conditions like asthma or allergies. Many interview participants reported not knowing they had nasal polyps until seeking medical help for other conditions. One in 5 (18%) said they didn’t recognize their symptoms as a sign of a chronic condition.

Standard of care is not effective for all patients, and access to newer treatments is challenging for some patients who may benefit.

• The two biggest challenges in long-term management of CRSwNP were reducing or eliminating symptoms (54%) and effectiveness of care and treatment (38%).
• The majority (76%) of patients have used nasal steroids (94%) and oral steroids (76%) at some point for CRSwNP, but some patients resorted concerns or challenges with these treatments.
• Among the pharmacological treatments for CRSwNP, patients reported biologics as having the highest utility.
• Efficacy, side effects, and doctor recommendation were reported as the 3 most important factors for patients when choosing a treatment option.
• Though patient awareness of emerging treatments was low, they are likely to participate in clinical trials if asked. 

Sinus surgery is effective for some patients, but others experience a recurrence of nasal polyps even after surgery, leading to greater frustration and reduced quality of life.

• Most (56%) patients reported having at least one endoscopic surgery to remove nasal polyps, with about 3 in 10 (29%) having more than one surgery.
• Among all treatments for CRSwNP, endoscopic surgery was reported as having the highest utility.
• For some people, recurrence of polyps after surgery led to a significant impact on quality of life.

CRSwNP has a significant impact on quality of life.

• Nearly half (46%) of patients reported that nasal polyps have a significant impact on their ability to get a good night’s sleep.
• A third (32%) of patients said nasal polyps have a significant impact on their ability to exercise.
• Mental and emotional impacts are also seen, with about 1 in 4 survey respondents saying nasal polyps have a significant impact on their emotional (25%) and mental (23%) health.

Patients and caregivers acknowledge a greater need for support and resources for CRSwNP.

• Patients were dissatisfied with general awareness of nasal polyps (37%) and financial resources to support medical care (37%).
• Patients were divided on their satisfaction with social and emotional support, with about the same number of respondents satisfied with social support (24%) as dissatisfied (28%).
• Two-thirds (67%) of patients would like more information about how to manage or reduce symptoms without surgery (67%) as well as treatment options (64%).
• More than half (51%) of patients they would like more basic nasal polyps information such as what they are and what causes them.
• One-third of patients would like more information on nasal polyps drug development (35%) and clinical trial opportunities (34%).

As the landscape of CRSwNP care in the U.S. continues to evolve, AAFA recognizes the need to better understand current challenges and barriers to timely diagnosis, quality medical care, effective treatments, and access to resources—particularly among AAFA’s patient community of people impacted by comorbid conditions like asthma and allergies.

This report provides an overview of the nasal polyps journey from the patient and caregiver perspective using data gleaned from a multi-component needs assessment study. By analyzing data and common themes from the study, AAFA identified several unmet needs and areas of opportunity for improving CRSwNP care.

In this section, we summarize unmet needs that emerged from the study as well as opportunities for CRSwNP stakeholders to address needs in the following domains:

• Health care provider (HCP) education and clinical care
• Patient education and public awareness
• Treatments and patient-centered research