Journeys in research: A trainee’s reflections on qualitative research focused on patient experiences with CAR-T therapy

Sneha Negi is a biomedical sciences student at Carleton University with a health science honors major. She is currently completing a term as a research placement student with Dr. Jennie Haw, a Canadian Blood Services scientist and adjunct research professor at Carleton University. 

While building her qualitative methodology expertise, Sneha has been exploring what patients receiving the chimeric antigen receptor therapy (CAR-T) have to say regarding their experience, opinions, access and outcomes of the therapy. Read more about her work as she describes it in this blog.

Understanding CAR-T therapy through patient experiences

Cellular therapy is an innovative technology that transplants human cells to replace or repair damaged cells. CAR-T therapy is a form of personalized cellular therapy where patients’ own immune cells, particularly T-cells, are genetically modified to better recognize and attack cancer cells. In particular, CAR-T therapy offers substantial survival benefits, low tumor burden and greater remission rates.

This approach provides transformed treatment for many relapsed and refractory blood cancers, offering curative hope to patients where conventional therapies have failed. It also represents the most advanced and rapidly growing therapy in cancer treatment (more than six CAR-T therapies have been FDA approved since 2017) that has demonstrated remarkable success and is increasingly being implemented in clinical use. However, while clinical studies have demonstrated this efficacy, it is also important to understand what patients themselves have to say about the therapy. 

My research project focused on summarizing qualitative findings of patients’ perspectives, experiences, access and outcomes of CAR-T therapy for hematological malignancies. Through a narrative review of qualitative studies, this project aimed to identify the existing literature on patient perspectives and CAR-T therapy, summarize how studies have been conducted and identify gaps and implications of the findings for future directions.   

Cellular therapies are not one-size-fits-all and, as a trainee involved in this project, I can see how research helps ensure patient voices shape how these therapies are delivered and experienced.

 

Findings: Beyond clinical outcomes 

One of the most significant findings presented through this review is how CAR-T therapy affects nearly every aspect of a patient’s life and thus should not solely be treated as a medical intervention but a deeply personal, life-altering journey. Patients reported fatigue and pain as the most frequently reported symptoms. At the same time, social and emotional impacts affected their ability to perform activities of daily living (ADLs), attend events, participate in work and social activities. Many patients experienced uncertainty, anxiety and isolation mainly during hospitalization. 

During CAR-T therapy, patients also highlighted the significant role of caregivers, and the impacts treatment can have on lifestyle disruption, financial burdens and time commitments. In terms of access, patients emphasized the logistical barriers such as long travels to treatment centers, long wait times, complex eligibility criteria and accommodation challenges. These challenges raise important questions about the accessibility and availability of CAR-T therapy for patients. Despite these challenges, patients expressed strong hope for remission and curative potential as CAR-T therapy was their “last bridge”.

Findings also suggested important gaps in literature for patient experiences for CAR-T therapy. Firstly, there is limited longitudinal research capturing patient-reported outcomes beyond the immediate post-infusion period, regarding long-term effects. Additionally, most studies lack demographic diversity, with a focus on English-speaking patients from high-income countries, resulting in limited insight into disparities across socioeconomic, geographic, and racial groups. Furthermore, studies incorporate experiences and perspectives of only patients who were eligible and decided to continue with CAR-T therapy, excluding experiences of non-recipients which might be patients who were eligible and did not continue the therapy or patients who were ineligible which remain underexplored. 

Project impact and future directions

By centering patient perspectives, this project contributes to a better understanding of patient experiences receiving CAR-T therapy. These insights can help inform policies, help researchers and healthcare providers to improve care pathways and ensure future innovations in cellular therapy are both effective and patient centered. It also suggests the importance of patient voices in CAR-T trial protocols and decision-making processes. 

Trainee reflections

Working on this project was truly an incredible learning experience. I have developed strong research skills in conducting search strategies, following a systematic search, as well as writing literature and narrative reviews. These skills have given me competencies in qualitative research, thematic analysis and evaluation of literature. I would encourage other trainees to seek out opportunities in research activities like literature reviews, scoping and systematic reviews that allow you to engage with both the research as well as the real-world impact of the findings.

As a trainee, I also got the opportunity to connect with other professionals in the health field in the form of informational interviews, join training sessions and engage in knowledge translation activities such as creating infographics, presentations and more. These experiences have deepened my appreciation of qualitative research methodologies and the field of immunology and hematology. By centering patient voices, we can better care pathways that are not only effective but also are equitable, accessible and personalized.

One of the most meaningful aspects of this project was recognizing the power in patient voices and their role in shaping healthcare pathways and practices. As a trainee, this project has reinforced the importance of looking at treatments holistically by assessing their real-world impact. I am truly grateful to Dr. Jennie Haw and Poojan Joshi (Msc) for their expertise and insights on the project.

 

Canadian Blood Services – Driving world-class innovation 

Through discovery, development and applied research, Canadian Blood Services drives world-class innovation in blood transfusion, cellular therapy and transplantation—bringing clarity and insight to an increasingly complex healthcare future. Our dedicated research team and extended network of partners engage in exploratory and applied research to create new knowledge, inform and enhance best practices, contribute to the development of new services and technologies, and build capacity through training and collaboration. Find out more about our research impact.  

The opinions reflected in this post are those of the author and do not necessarily reflect the opinions of Canadian Blood Services nor do they reflect the views of Health Canada or any other funding agency.