Patient experiences in retinal trials: a cross-sectional study

Area of Science:

• Ophthalmology
• Clinical Research
• Patient Experience

Background:

• Patient-centered care emphasizes understanding and meeting patient expectations.
• Patient satisfaction influences health decisions, treatment adherence, and outcomes.
• This study investigated patient expectations, experiences, and satisfaction in retinal disease clinical trials.

Purpose of the Study:

• To assess patient satisfaction with retinal clinical trials.
• To understand patient decision-making factors for trial participation.
• To evaluate patient understanding of trial processes and rights.

Main Methods:

• A 37-question survey was administered to patients in retinal clinical trials at Sydney Eye Hospital.
• The survey assessed decision-making, understanding, experiences, and perceptions of trial outcomes.
• Patient satisfaction was measured using close-ended, multiple-choice questions.

Main Results:

• High overall patient satisfaction reported, with 94% recommending participation and 78% willing to join future trials.
• Patients cited contributing to medical science and seeking improved treatment outcomes as primary motivators.
• While most felt informed, 14% were unaware of their right to withdraw from the study.

Conclusions:

• Participation in retinal clinical trials is generally a positive experience for patients.
• Inconveniences such as transportation and waiting times were key factors in dissatisfaction.
• Ensuring complete patient understanding of study rights, including withdrawal, is crucial for optimal trial experience.