Impact of Peyronie's disease on sexual and psychosocial functioning: qualitative findings in patients and controls

Abstract

Introduction: There are no validated scales for assessing the psychosocial impact of Peyronie's disease (PD), which affects approximately 5-10% of men over age 50.

Aim: To develop a psychometrically valid outcome measure for assessing psychosocial and sexual consequences of PD. To conduct a qualitative study of men with PD and age-matched controls, and design a new patient-reported outcome measure of PD.

Methods: An expert advisory panel identified relevant topics and conceptual areas to be addressed based on clinical experience and literature reviews. A conceptual model was developed to serve as a discussion guide for qualitative interviews with geographically and ethnically diverse PD subjects and controls. Interviews were conducted in a focus-group format by a trained interviewer and were recorded and transcribed for qualitative analysis according to grounded theory concepts.

Main outcome measure: Focus-group interviews.

Results: Focus-group interviews were conducted with 64 men (28 PD patients, 36 controls) in 13 separate focus groups over a 3-month period. Blinded analysis of the interview transcripts identified four core domains: (i) physical appearance and self-image; (ii) sexual function and performance; (iii) PD-related pain and discomfort; and (iv) social stigmatization and isolation. Based on feedback from participants and experts, a new outcome questionnaire was developed to assess core domain responses in a structured, self-report format.

Conclusions: This qualitative study helped to refine and broaden the focus of the conceptual model for further assessment. It also confirmed that PD has a major impact on sexual and psychological function in these patients.