QIM19-136: Developing an Ideal CAR-T Cell Therapy Patient Experience Through Human-Centered Design and Innovation

Abstract

Background: The patient/caregiver experience during CAR-T therapy is stressful, overwhelming, terrifying, and often a patient’s last treatment option. The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery Innovation and Design team has worked with the CAR-T therapy clinical team to develop a patient experience that provides patients with a sense of caring, supportive environment, timely knowledge, and realistic expectations. Using a human-centered design approach, the Innovation and Design team worked with patients and caregivers to understand latent and unspoken needs in order to develop an ideal CAR-T therapy patient journey. Methods: With qualitative interviewing techniques, patient observation, and low fidelity experimentation, 21 patients/caregiver pairs were interviewed throughout their CAR-T therapy experience in 2018. Patients were interviewed at several touch points as well as encouraged to reach out to the Innovation and Design team at any point with reflections on their experiences. Patients were recruited as they began their evaluation phase for CAR-T therapy. The interviews were unscripted to allow for a breadth of discovery by not constraining the conversations to previously developed themes. As themes emerged from patient/caregiver interviews, artifacts and interventions were designed to alleviate pain points and improve the patient/caregiver experience. These artifacts and interventions were integrated into the clinical processes in real time and patient/caregivers were interviewed to understand the impact of these activities. Results: Several themes emerged from qualitative interviews with patients and caregivers. From the themes, interventions were developed. We were able to demonstrate a qualitative improvement in patient/caregiver experience through these interventions (Figure 1). Conclusions: Patients/caregivers undergoing CAR-T therapy have unique issues surrounding the logistics of care, emotional burden, and physical effects of treatment. We implemented processes to address these issues and observed a qualitative improvement via patient interviews/feedback. Ongoing work includes optimizing remote monitoring, digital platforms for patient education, and a quantitative study looking at patient reported outcomes (PROs) in such patients. To our knowledge, this is the first report for care delivery optimization in real-world practice for this new therapy.

The EBMT/EHA CAR-T Cell Handbook

“…Little is known about patient priorities and needs after CAR-T therapy, but the current literature underscores the importance of appropriate information. By interviewing patients, Matthews et al found that most felt unprepared for the emotional aspects of CAR-T therapy nor were they prepared for the intensity of the toxicities (Matthews et al 2019). The importance of addressing issues, such as clear information on the treatment trajectory (Bamigbola et al 2021), financial toxicity, and the importance of family members and other caregivers, has also been described .…”

Balancing Quality, Cost, and Access During Delivery of Newer Cellular and Immunotherapy Treatments

“…Centers have implemented a multidisciplinary evaluation from geriatricians, physical and occupational therapy, social workers, and dieticians before stem cell transplants to not only select appropriate patients but act on modifiable risk factors [54]. Other centers have implemented remote monitoring, utilizing the digital platform for patient education to identify barriers to access and study patient-reported outcomes [55]. For improved access, it is critical for a holistic approach for patients undergoing CAR T cell therapy.…”

What do Patients Want? The Importance of Patient-reported Outcomes

“…Little is known about patient priorities and needs after CAR-T therapy, but the current literature underscores the importance of appropriate information. By interviewing patients, Matthews et al found that most felt unprepared for the emotional aspects of CAR-T therapy nor were they prepared for the intensity of the toxicities (Matthews et al 2019). The importance of addressing issues, such as clear information on the treatment trajectory (Bamigbola et al 2021), financial toxicity, and the importance of family members and other caregivers, has also been described (Foster et al 2020).…”