NAFC's Annual Patient Surveys
Every year, NAFC conducts national surveys to better understand the real experiences, needs, and challenges of people living with bladder and bowel health conditions. These surveys help us identify trends, uncover gaps in care, and amplify the voices of individuals who are often overlooked or hesitant to speak up.
NAFC’s latest national survey explores one of the most pressing challenges in incontinence care: the gap between seeking treatment and finding meaningful relief. The survey captures firsthand experiences from people living with incontinence, examining their journeys through the healthcare system, including barriers to seeking care, communication with healthcare providers, treatment effectiveness, reasons for discontinuing treatment, and awareness of available options.
This report highlights critical gaps in the patient journey, revealing that seeking care does not always lead to clear answers or effective treatment. The findings suggest that many patients become stuck after an unsuccessful treatment, unsure of what to try next or whether additional options are available. The results underscore the need for better patient education, stronger provider communication, and ongoing support to help individuals navigate their treatment journey.
Some of the key findings of the Access to Care Survey include:
1. Seeking care doesn’t always lead to answers
While 84% of respondents had spoken with a healthcare provider about their incontinence, only 34% left their appointment with a clear understanding of their condition. This disconnect highlights the need for better communication and patient education during medical visits.
2. Many patients discontinue treatment before finding relief
An overwhelming 75% of respondents reported stopping at least one treatment. Among those who discontinued treatment, a common reason was that the treatment simply wasn’t working well enough. These findings raise important questions about how patients are supported when an initial treatment fails.
3. Nearly half are still struggling to manage their symptoms
Despite efforts to seek care and manage their condition, 47% of respondents reported that their current approach wasn’t working. This suggests a significant unmet need for more effective treatment strategies and continued engagement with healthcare providers.
4. Too many patients fall out of care
Among respondents who had spoken with a healthcare provider, 41% were no longer receiving care or treatment. This finding highlights a critical gap in the patient journey and the importance of helping individuals understand their next steps when treatment isn’t successful.
5. Barriers extend beyond access to a doctor’s appointment
Patients reported multiple obstacles to seeking and continuing care, including cost or insurance concerns (29%), embarrassment or anxiety (26%), and fear of treatment (22%). These barriers can make an already challenging treatment journey even more difficult to navigate.
6. Patients want more information about their options
The survey revealed a strong demand for better treatment education, with 64% of respondents expressing interest in a guide to available treatment options and 37% seeking more information about advanced therapies. These findings suggest that patients want to better understand their choices and take a more active role in managing their condition.
For industry leaders, researchers, and healthcare partners, this survey offers a valuable patient-reported perspective on where the incontinence treatment journey breaks down—and why so many patients struggle to move forward after an unsuccessful treatment. The findings reveal opportunities to improve patient education, strengthen continuity of care, expand awareness of treatment options, and develop more effective, patient-centered solutions that help individuals achieve lasting relief and a better quality of life.
About The Surveys
Access Surveys HEre
2025 Survey: Mental Health & Incontinence
NAFC’s latest national survey explores one of the most overlooked dimensions of bladder and bowel conditions: the profound impact on mental and emotional well-being. A 56-question survey was conducted with 330 respondents with who shared (multiple choice & open-ended) candid experiences about how incontinence affects their daily lives, including anxiety, depression, social isolation, sleep disruption, intimacy, confidence, and overall quality of life.
This report highlights critical connections between symptom severity, treatment engagement, coping behaviors, and emotional health. The findings reveal significant unmet needs and underscore the importance of whole-person care approaches in pelvic health.
Some of the key findings of the Mental Health & Incontinence Survey include:
1. Incontinence takes a serious toll on mental health
Over 90% of people living with incontinence report an impact on their mental health, and more than half describe that impact as moderate to significant. Feelings of embarrassment, anxiety, and frustration are nearly universal.
2. Daily life is shaped by fear of leakage
Incontinence disrupts everyday activities including travel (92%), social life (89%), self-confidence (88%), and sleep (81%). Many respondents describe constant vigilance and planning as mentally exhausting.
3. Embarrassment remains a major barrier to care
While most respondents have spoken to a doctor, 15% have not. Among those who avoid medical care, embarrassment is the leading reason, cited by nearly half.
4. Many people suffer in silence
Nearly 70% of respondents actively hide their condition. About one-third report feeling emotionally unsupported by close family members or partners, reinforcing isolation and stigma.
5. Treatments often fall short emotionally and clinically
Fewer than half of respondents say their current treatment plan is effective. For many, treatment has not improved emotional well-being and, in some cases, has made frustration worse.
6. There is strong demand for better options and support
Frustration with existing treatments is driving interest in alternatives. Nearly three-quarters want to learn about additional treatment options, and many are actively seeking mental-health-focused educational resources.
For industry leaders, researchers, and healthcare partners, this survey offers a unique, patient-reported lens into the psychological burden of incontinence, an area essential to improving outcomes, guiding innovation, and shaping patient-centered solutions.
TRusted Partners: ACCESS ALL Surveys
Trusted Partners receive comprehensive access to NAFC’s full survey data. Please enter the access code included in your Trusted Partner packet to view and download all reports.
Thank you to our Partners
We extend our sincere appreciation to the partners who have supported this research over the years. Their commitment to patient-centered insights helps make this work possible and drives meaningful progress in bladder and bowel health
