New Study Examines the Patient Perspective of Living with Recurrent Respiratory Papillomatosis
What Does It Actually Feel Like to Live With RRP? A New Study Finally Puts the Numbers Behind the Experience
For people living with Recurrent Respiratory Papillomatosis — and the families who support them — the challenges of this disease go far beyond the operating room. The financial pressure, the emotional weight, the impact on your voice, your work, your daily life. Our community has known this for a long time.
Now, a newly published study in The Laryngoscope puts real data behind what so many of us have been saying for years. And the best part? That data came directly from members of our community.
Here’s what the study found, and why it matters.
What Was This Study About?
A team of researchers led by Dr. Sara Pai at Yale University School of Medicine set out to understand the full picture of what it’s like to live with RRP — not just from a medical standpoint, but from the perspective of patients and caregivers themselves.
They looked at survey responses from 122 people in the United States who are part of the RRPF/CoRDS Patient Registry. Of those 122 participants, 55% had juvenile-onset RRP (diagnosed before age 18) and 45% had adult-onset RRP. About 80% of the surveys were completed by patients themselves, and the remaining 20% were filled out by parents or legal guardians on behalf of younger patients.
The study examined the burden of RRP across three areas of life: clinical (the medical side), economic (the financial side), and humanistic (the emotional and social side).
Who Participated?
The participants ranged in age from infants to 64 years old. The group was 59% female and 41% male. At the time they completed the survey, the vast majority — 84% — reported that their disease was still active. Only 13% were in remission, and a small number weren’t sure of their current status.
Among those who provided information about their birth, 88% were born via vaginal delivery. And notably, 78% reported that their mother had not received the HPV vaccine — a detail that underscores the importance of vaccination in preventing this disease.
What Are People Most Worried About?
When asked about their greatest concern related to their RRP diagnosis, the answers paint a clear picture of how deeply this disease affects people’s lives.
The top fears reported were:
Permanent communication problems — 35.7% of respondents said this was their number one concern. For a disease that grows on the vocal cords and airway, the threat of losing your voice — or never having a normal one — is very real.
The disease spreading — 22.4% worried most about their RRP spreading to other parts of the airway or lungs.
Financial burden — 15.3% pointed to the cost of ongoing treatment as their biggest concern.
Death from RRP — Another 15.3% said their greatest fear was that the disease could ultimately be fatal.
These aren’t abstract statistics. They reflect the daily reality for thousands of people and families living with RRP.
The Clinical Picture: A Lifetime of Procedures
RRP is a disease that often requires repeated surgeries to remove papilloma growths from the airway. For many patients, this means dozens — sometimes hundreds — of procedures over the course of a lifetime. Each surgery carries risk, including the potential for lasting damage to the vocal cords.
At the time of the survey, 84% of participants were still dealing with active disease, which means the cycle of treatment was ongoing. The study highlights that the repeated nature of these procedures can lead to significant physical and psychological consequences, including post-traumatic stress disorder (PTSD), anxiety, and depression.
The Economic Picture: It Adds Up
Managing a rare, chronic disease is expensive. Between surgeries, specialist appointments, medications, travel to see doctors with expertise in RRP, and time away from work or school, the financial toll can be enormous. The study confirmed that economic burden is a major concern for patients and families — ranking among the top worries alongside the disease itself.
For children with RRP, this burden also extends to missed school days and the impact on parents’ ability to work. For adults, it can mean lost income and limited career opportunities.
The Emotional Picture: More Than a Medical Condition
Perhaps the most important contribution of this study is its focus on the humanistic burden — the emotional and social toll of living with RRP.
This disease doesn’t just affect your body. It affects how you communicate, how you feel about yourself, how you interact with the world. The fear of losing your voice, the anxiety of not knowing when the next surgery will be needed, the frustration of explaining a rare disease that most people have never heard of — it all takes a toll.
The study reinforces what earlier research has shown: that RRP can severely impact the mental and social well-being of both patients and their families.
Why This Study Matters
There are a few reasons this particular study is so significant.
First, the data came from patients. This wasn’t researchers making assumptions about what life with RRP is like. It was people living with the disease — and their caregivers — sharing their own experiences through the RRPF/CoRDS Patient Registry.
Second, it looked at the whole picture. A lot of RRP research focuses narrowly on surgical outcomes or clinical measures. This study intentionally examined the economic and emotional dimensions as well, giving a much more complete view of how the disease affects people’s lives.
Third, it was published in a top medical journal. Having this kind of patient-centered data in The Laryngoscope means it reaches the doctors, researchers, and policymakers who are in a position to make a difference.
What You Can Do
If you’re living with RRP and you haven’t yet joined the RRPF/CoRDS Patient Registry, we encourage you to consider it. Studies like this one are only possible because people in our community took the time to share their experiences. That data drives awareness, informs research priorities, and ultimately moves us closer to better treatments and outcomes.
Your voice — your experience — has the power to shape the future of RRP care.
Join the RRPF/CoRDS Patient Registry →
To read the full study, visit The Laryngoscope: The Patient Perspective of Living With Recurrent Respiratory Papillomatosis
Citation: Pai SI, et al. “The Patient Perspective of Living With Recurrent Respiratory Papillomatosis.” The Laryngoscope, 2026. doi: 10.1002/lary.70412
