Date Published: October 23, 2011
Publisher: Hindawi Publishing Corporation
Author(s): Dana Britt DiBenedetti, Dat Nguyen, Laurie Zografos, Ryan Ziemiecki, Xiaolei Zhou.
Purpose. To estimate the US prevalence of Peyronie’s disease (PD) from patient-reported data and to identify diagnosis and treatment patterns.
Methods. 11,420 US males ≥18 years old completed a brief web-based survey regarding the presence of PD, past treatments, and penile symptoms (Phase 1). Phase 1 respondents with PD diagnosis, history of treatment, or PD-related symptoms then completed a disease-specific survey (Phase 2).
Results. Estimated prevalence of PD ranged from 0.5% (diagnosis of PD) to 13% (diagnosis, treatment, or penile symptoms). Thirty-six percent of Phase 2 participants reported that penile symptoms interfered with sexual activities. Of participants who sought treatment for penile symptoms (n = 128), 73% initially saw a primary care physician, 74% did not receive treatment from their first doctor, and 92% were not diagnosed with PD.
Conclusions. PD may be underdiagnosed/undertreated in the US. Improved awareness is needed of PD symptoms and treatment options among health care professionals.
Peyronie’s disease (PD) is a progressive fibrotic tissue disorder with unknown etiology [1–3]. It is a connective tissue disorder of the penile tunica albuginea that results in the formation of a palpable scar or hard plaque, most commonly on the dorsal surface of the penis, which may cause a curvature deformity and changes in the length or circumference of the penis while erect. Penile folding or collapsing during intercourse, penile pain, and erectile dysfunction (ED) are also associated with PD . In a recent retrospective study of 1,001 patients with PD, 58.1% of patients reported having ED . PD may also limit the ability to have intercourse and may make intercourse less enjoyable, more awkward, and even impossible. PD can be psychologically and physically devastating for patients and can also negatively impact partner relationships [5, 6].
Of the 16,000 men aged 18 years and older who were randomly selected from the pool of KN panel members and invited to participate in Phase 1, a total of 11,420 completed the screening survey for a response rate of 71%. In Phase 1 of the study, 415 PD patients were identified (101 of them reported a PD diagnosis and/or surgical/nonsurgical treatment) and invited to complete a full survey in Phase 2. Of those invited to participate, 283 (68%) consented and completed the PD full survey in Phase 2.
Although PD has been recognized for over 200 years, no consensus exists with regard to the etiology, prevalence, treatment, or even the definition of this condition. The current study, the first large-scale, web-based population survey of PD among men in the US, showed the estimated prevalence of PD in the US to range from 0.5% (diagnosis of PD) to 13% (diagnosis, treatment, or penile symptoms) using criteria described previously. The estimate of 0.5% was based on respondent-reported diagnosis by a physician. The study did not collect information on what exams were used by the physician to arrive at the diagnosis. However, this number may be underestimated because most of the responders of the study did not see a physician even though they experienced penile symptoms. When including those reporting penile symptoms, the prevalence increased to 13%. The higher prevalence of symptoms of PD compared with the actual diagnosis suggests that PD may be underdiagnosed in the US. Additionally, diagnosis of ED and high usage of ED-related treatments may actually indicate misdiagnosis of PD symptoms. Underreporting of PD may occur because affected individuals are not comfortable discussing symptoms with health care professionals or are unaware of effective treatment options. In addition, health care professionals may not recognize symptoms when presented by patients, or they may not perform physical exams themselves and may instead refer patients to a specialist. Not all health care professionals may be properly trained in this area of research, and thus, they may be unaware of available treatments.
This study is the first large-scale, web-based population survey of PD among a representative sample of US adult men. The patient-reported prevalence of PD ranged from 0.5% to 13%, depending on how the occurrence of PD was defined. One-third of participants reporting PD also reported interference with sexual activities. More than 90% of PD patients who sought medical care for penile symptoms did not receive a diagnosis of PD, and approximately 75% did not receive any treatment from the first doctor seen. Study findings suggest that PD may be underdiagnosed and undertreated in the US and point to the need for better awareness of PD and related treatment options among health care professionals.