QUALITOP Conference: Results of the Project and Patients’ Perspective
On the 26th of June, QUALITOP organised a public conference in Amsterdam, concentrating on the challenges and advancements in clinical trials and quality of life research, particularly highlighting the achievements of project QUALITOP. This gathering convened leading experts and researchers who shared insights, discussed obstacles, and showcased innovative solutions aimed at enhancing the quality of life for cancer patients.
The event kicked off with an opening address and project presentation by Prof. D. Maucort-Boulch, project coordinator, from Hospices Civils de Lyon (HCL) who set the stage for a day packed with insightful presentations and collaborative discussions. “Our consortium, comprising 14 diverse partners across disciplines and geographies, was unified by a shared ambition. Our goal is not only to enhance clinical efficacy but also to refine our understanding of how treatments impact patients’ daily lives.” She added.
The difficulties during recruitment
During the session, challenges and mitigations throughout the project were discussed. Dr. Susana Puig from the Consorci Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS) highlighted significant challenges in data collection for clinical trials during the pandemic. Dr. Anne Spanjaart from Amsterdam UMC presented innovative solutions for recruiting patients for a CAR-T cell survey. She emphasised the difficulty of patient recruitment and the shortage of study participants, noting the importance of alternative strategies: “We created a European patient survey available in seven languages, focusing on experiences, unmet needs, and quality of life.” Additionally, Dr. Bernard Rachet from the London School of Hygiene and Tropical Medicine (LSHTM) and Alexandra Fournier from HCL discussed the complexities of data sharing across centres and countries. Both stressed the burden of bureaucratic processes causing delays and difficulties in data transfer.
The Results
The event further went to discuss the results from the project, Dr. Ananya Malhotra from the LSHTM (WP5) presented findings on the determinants of quality of life at baseline within the QUALITOP cohorts. The study provided valuable insights into the factors influencing patients’ quality of life prior to treatment.
Elsa Coz from HCL (WP5) shared research on the evolution of quality of life in melanoma patients undergoing treatment with immune checkpoint inhibitors. The findings highlighted no significant changes in Quality of life and though older age was linked to decreased quality.
Dr. Mohammad Jalali (‘MJ’) from Harvard Medical School and Mass General Hospital (WP7) talked about the results of a simulation modelling approach for understanding the dynamics of quality of life. The results indicate that reducing infusion delays significantly improves the quality of life for patients with both complete responses and relapses while having minimal impact on non-infusion patients. The model highlighted the gaps in current data collection which can be a guideline for future research.
Lea Baillat from Université Lyon 2 (WP3) examined the impact of cancer immunotherapy on the quality of life and dyadic adjustment in couples. Léa’s study highlights the complex dynamics of coping in couples dealing with immunotherapy for cancer. The findings underscore the need for better communication and support mechanisms tailored to individual needs to foster positive adjustments.
Valentin Verdier from Université Lyon 2 (WP3) discussed the burden of treatment and patients’ expectations for improving care. The results highlighted difficulties in identifying side effects’ origins, fears of secondary effects and relapse, and the need for better medical monitoring and supportive care. He recommended enhancing patient-centred care, improving support for social and professional life, and integrating complementary treatments.
Dr. Amélie Anota from Centre Léon Berard (WP3) presented the response-shift phenomenon and its assessment using the FACT-G questionnaire. Her research found that patients starting immunotherapy showed significant changes in how they perceived their quality of life, particularly in the emotional domain, where patients reported higher well-being after three months. There were also notable changes in the social and functional well-being areas. Dr. Anota recommends further studies to explore these shifts over longer periods to better understand their progression.
The last part of the conference was dedicated to the demonstration of a smart digital platform which was conducted by Dr. Amal Elgamal, a senior researcher at Scientific Academy for Service Technology (ServTech), Dr. Mohand-Saïd Hacid from Université Lyon 1 Claude Bernard, and Prof. Alfredo Cuzzocrea from University of Calabria. WP4 and WP6 presented the benefits to patients and clinicians by using the QUALITOP platform. This was followed by a brief demonstration of how the QUALITOP platform works. A dedicated session was held to present perspectives from patients, providing a firsthand account of their experiences and the impact of clinical trials and treatments on their quality of life.
The event concluded with closing remarks from Prof. D. Maucort-Boulch, who reiterated the importance of collaboration, innovation, and patient-centred approaches in advancing clinical research and improving the quality of life for patients. The event was a resounding success, fostering meaningful dialogue and setting the stage for future advancements.
Click here to read full report
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 875171.