Patient engagement and perceived impact of clinical trials in hematology Free

Clinical trials are basic to therapeutic innovation and a vital opportunity for patients to access cutting-edge therapies. But how do patients perceive them? Their success depends not only on scientific rigor but also on patient engagement and trust. In an era of patient-centered care, understanding how individuals perceive clinical trials is key to designing research environments that are both effective and caring.

The Hematology Unit of Sant'Eugenio Hospital in Rome, a public, community-focused institution, has actively participated in national and international phase II–IV studies, including registrational trials. Between 2020 and 2024, the number of active studies markedly increased, improving access to innovative therapies, enhancing care quality, and strengthening institutional reputation.

To assess patient perspectives, an anonymous, structured questionnaire was distributed by volunteers and clinical research coordinators (CRC) over one month to unselected patients attending the Unit. It included a demographic section and items evaluating:

Perceived quality of care

Assistance satisfaction

Awareness of the importance of clinical research

Physician–patient communication

Impact on quality of life (QoL)

Suggestions for improvement

Each section included space for open-ended comments, encouraging free expression consistent with narrative medicine.

A total of 423 responses were collected. Most respondents were over 56 years old (69%), with a slight female predominance (57%). Overall feedback was highly positive: over 90% being “very satisfied” or “satisfied” with their care, citing improved QoL, disease remission, and minimal side effects. Open-text responses often described the Unit as a “familiar” setting combining professionalism and empathy. Staff was often seen as attentive and reassuring.

Clinical trial participation was reported by 31% of patients, 43% of whom had been enrolled for over three years, indicating strong retention. Most associated their involvement with early access to innovative, less toxic therapies and, in some cases, achievement of treatment-free remission. Several patients reported meaningful life events—such as pregnancy—made possible by trial participation. Others emphasized the satisfaction of contributing to scientific progress and supporting future patients.

Awareness of research value was high: 83% of respondents rated clinical trials as “very important” for the hospital, and 16% as “important.” Many viewed research as central to therapeutic progress, especially for rare or resistant conditions. Notably, 74% said the availability of clinical trials influenced their choice of care center, perceiving it as a sign of excellence and safety.

While the overall outlook was positive, areas for improvement emerged. A minority reported severe side effects or communication gaps at enrollment. Suggestions included clearer and earlier information, greater visibility of support services (e.g., psychologists, nutritionists), and simplified administrative procedures. Some expressed frustration over delays or limited support during complex or time-sensitive visits.

Beyond these findings, the survey highlighted the importance of patient engagement beyond trial participation. The modern patient does not passively undergo treatment, but seeks to understand it, take part, and be able to discuss it. Clinical research can serve as a bridge between innovation and daily practice. It provided valuable feedback to improve communication and clarify roles among all healthcare providers involved—including volunteers and CRC—ensuring a more cohesive support network.

Narrative responses offered deep insights into the patient experience. Many expressed gratitude for the opportunity to improve through experimental therapies and felt actively involved in their care. Others called for more transparency, regular updates, and better dialogue about available trials. A strong altruistic drive emerged, with patients motivated by the desire to help future generations, despite personal uncertainty.

All collected data—both quantitative and narrative—will be presented to provide a comprehensive picture of how patients perceive clinical trials in a real-world, hematologic setting. This integrated approach aims to inform strategies that enhance scientific quality, operational efficiency, and the human dimension of clinical research, promoting inclusive patient involvement, trust and collaboration between healthcare professionals and patients.