(032) PATIENT PERSPECTIVES OF PEYRONIE’S DISEASE: A QUALITATIVE APPROACH TO UNDERSTANDING THE PSYCHOSOCIAL COMPLEXITIES OF TREATMENT FOR PEYRONIE’S DISEASE
Authors: Amighi A , Hatton S , Lee J , Gore J , Walsh T , Hehemann M 
Published: December 2024

Introduction

Few studies have explored the complex psychosocial effects of Peyronie’s disease on patients and their partners or what influences their treatment choices. FDA approved therapies for Peyronie’s disease have varying degrees of success for individual patients; however, the demand for these therapies remains high. It is unclear what factors encourage patients to choose surgery or medical therapy. The patient experience of modern Peyronie’s disease treatment is not well understood, which limits effective shared decision-making.

Objective

To better characterize patient experiences with Peyronie’s disease and its treatment with injectable therapy and/or surgery through a qualitative analysis.

Methods

With institutional review board approval, we conducted semi-structured interviews with adult patients who underwent Peyronie’s disease treatment at our institution between January 2020 and May 2024. We audio-recorded, transcribed, and analyzed the interviews using ATLAS.ti software. Deductive codes based on the PDQ and existing literature were used to analyze the data. Additional inductive codes were applied iteratively as salient topics emerged during analysis. Cross-cutting themes were identified and are reported here.

Results

We interviewed 19 patients; 11 had undergone treatment with intralesional collagenase clostridium histolyticum (CCh) therapy alone and 8 had undergone surgery. Among surgery patients, 3 had prior CCh therapy. The four predominant themes were 1) Peyronie's disease burden and characteristics 2) treatment decision-making factors 3) experience with the health care system and 4) treatment outcomes. Several men discussed their motivation for Peyronie’s disease treatment relating to a sense of pride or yearning for youthfulness. Factors impacting treatment choice included urinary function, influence from marketing, and fear of insurance coverage lapses. Relationship status and goals were a motivating factor for many, but not all men. Few men reported decisional regret even in the setting of dissatisfactory results. Men who underwent surgery were more likely to have undergone previous unrelated surgeries and prioritize expedience of treatment. Men who elected to undergo CCh therapy were averse to the idea of a “scalpel” and favored a sequential approach to therapy, leaving surgery as an option.

Conclusions

Our qualitative study identified several novel insights into the disease state as well as the decision-making of men with Peyronie’s disease. Issues of identity and intimate relationships were highly represented, which are critically lacking from existing patient outcome metrics. We also found key decision-making factors not previously shown in the literature such as effects of advertisements, previous surgery, and impact on urination, which are crucial for enhanced shared decision-making. These findings could inform a decision aid to support men navigating the complex decision-making process when confronted with Peyronie's disease or supplement outcome measures in future quantitative studies.

Disclosure

Any of the authors act as a consultant, employee or shareholder of an industry for: Boston scientific.