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Materials for Patients Entering CAR T Cell Therapy and their Caregivers Presented by: Richa Ruwala, BS ICEC 2020 October 12-16, 2020 Virtual Conference Co-authors: M. Claire Saxton, MBA1, Susan Ash-Lee, MSW, LCSW1, Elizabeth Franklin, PhD, LGSW, ACSW1, Maria Gonzalo, MS1, Jenny Karubian, MA3, Kirstin Fearnley, MALS1, Richa Ruwala, BS1, Alex Swales, MSW1, Alexandra K. Zaleta, PhD2 Cancer Support Community, Washington D.C. 2 Cancer Support Community, Research and Training Institute, Philadelphia PA CancerSupportCommunity.org 1

Conflict of Interest Disclosure I do not have any potential conflicts of interest to disclose. This project was made possible with generous support from Kite, a Gilead company. CancerSupportCommunity.org CancerSupportCommunity.org 3

Objectives Understand the informational needs of patients and caregivers facing CAR T therapy. Identify the specific challenges faced by CAR T patients and their caregivers as well as health care provider, patient, and caregiver perceptions of needs. Identify three educational, logistical, and support needs for CAR patients and caregivers. CancerSupportCommunity.org CancerSupportCommunity.org 4

Cancer Support Community CancerSupportCommunity.org CancerSupportCommunity.org 5

Frankly Speaking About Cancer High quality, evidence-based educational programming Frankly Speaking About Cancer (FSAC) – Provide easy to understand in-depth coverage of topics relevant to those affected by cancer – To educate and to empower cancer patients, survivors, caregivers, and health care professionals – Topics are tumor type-specific (e.g. melanoma, lung, metastatic breast, liver, colorectal, multiple myeloma) or cross-tumors (e.g. immunotherapy, clinical trials, treatments and side effects) – Provide up-to-date content and reflect new advances in knowledge CancerSupportCommunity.org CancerSupportCommunity.org 6

FSAC CAR T Program CancerSupportCommunity.org CancerSupportCommunity.org 7

CAR T Challenges: New treatment, few centers offer CAR T “Last chance” option; patients have relapsed or not responded to previous treatments Complicated treatment process with many steps Severe side effects Treatment is not a repeating cycle Important for patients & caregivers to understand the steps, risks, and potential out-of-pocket costs CancerSupportCommunity.org CancerSupportCommunity.org 8

FSAC CAR T Program CancerSupportCommunity.org CancerSupportCommunity.org 9

CAR T Needs Assessment Developing an in-depth education guide for patients (and their caregivers) being screened for and undergoing CAR T cell therapy CSC conducted a series of qualitative needs assessments with patients, caregivers, and health care providers at cancer centers administering the therapy Goal: To inform the development of educational materials for patients and caregivers undergoing CAR T therapy, CSC investigated health care provider, patient, and caregiver perceptions of needs CancerSupportCommunity.org CancerSupportCommunity.org 10

Methods 2 in-person and virtual focus groups (90 minutes each) – 1 via Zoom – 1 in-person 9 telephone interviews with patients, caregivers, and health care providers (1 hour each) Touchpoints document Questions were designed to identify: – – – – – – Educational needs Support needs Logistical needs Resources that would be most useful to those facing CAR T therapy Communication gaps Generic timetable for CAR T Therapy provision CancerSupportCommunity.org CancerSupportCommunity.org 11

Characteristics of the Sample 4 patients who received CAR T cell therapy 3 caregivers 4 medical oncologists 3 nurses 1 director of nursing 1 social worker 1 patient coordinator/navigator CancerSupportCommunity.org CancerSupportCommunity.org 12

General Unmet Educational Needs Resources desired by patients and caregivers: Educational materials and videos explaining treatment at each step Documents/videos describing side effects and giving clear instructions for caregivers Documents/videos explaining treatment timeline from apheresis through post-infusion Videos or online resources that share success stories CancerSupportCommunity.org 13

Patients’ Unmet Educational Needs CAR-T Patients would like to have materials that clearly explain the CAR-T treatment process. These materials will ideally: Explain the regimen from beginning to end Show the different phases of treatment with a clear timeline and milestones Describe the most common side effects “I “I think think [it’s [it’s important important to to have] have] something something to to read read that that was was easy easy to to understand.exactly understand.exactly what what is is CAR CAR T-cell T-cell immunotherapy immunotherapy treatment, treatment, what what does does itit entail entail the the lymphodepleting lymphodepleting chemotherapy, chemotherapy, the the after after effects.” effects.” -Patient Patient CancerSupportCommunity.org “I “I think think [it’s [it’s important important to to have] have] pamphlets pamphlets where where they they can can understand understand in in layman's layman's terms, terms, what what is is CAR CAR T-cell T-cell treatment? treatment? What What are are the the common common side side effects? effects? What What are are patients' patients' experiences?” experiences?” -- Patient Patient 14

Caregivers’ Unmet Educational Needs Caregivers did not feel there were adequate resources for them considering the time commitment required Caregivers were shocked by severity of acute symptoms Resources desired include: Information on side effects, what to watch out for, and fair warning about the severity of acute symptoms Increased emotional support Online support groups Local information for the area to plan their stay External resources to help cover travel expenses “Try “Try to to be be really really organized. organized. Make Make lists lists of of things things you you need need to to do. do. Kind Kind of of like like when when you you go go on on aa vacation, vacation, you you have have your your list list of of things things you you need need to to do do and and buy.” buy.” -- Caregiver Caregiver CancerSupportCommunity.org “I “I know know the the doctors doctors and and nurses, nurses, and and hospital hospital staff staff did did their their best, best, but but II really really think.caregivers think.caregivers of of the the patient patient need need aa lot lot more more emotional emotional support.” support.” -- Caregiver Caregiver 15

Who’s Who CAR-T patients and caregivers would like an information sheet that has information for all relevant staff during and after treatment. The sheet should include: Each staff member, with name and contact info Instructions on who to call (doctor, nurse, patient coordinator) for each individual issue such as side effects, logistic concerns, or emotional support needs “You're “You're always always going going to to meet meet your your care care team, team, so so make make sure sure that that you you understand understand who who these these people people are are and and how how to to communicate communicate with with them. them. When When you you meet meet somebody, somebody, make make an an effort effort to to really really know know who who they they are, are, know know what what they they do do and and how how they they can can help help you you and and how how you you can can communicate communicate with with them.” them.” -Caregiver Caregiver CancerSupportCommunity.org “All “All patients patients meet meet with with aa social social worker. worker. We We need need to to make make sure sure that that they they have.access have.access to to care care providers, providers, make make sure sure that that they they are are emotionally emotionally understanding understanding what's what's going going on, on, and and that that they're they're going going to to have have the the support support that that they they need need for for post-discharge.” post-discharge.” -- Doctor Doctor 16

Health Care Providers’ Needs Materials that explain how CAR-T works to share with patients and caregivers by: Explaining how CAR-T treatment works at a biological level Breaking down each phase of treatment, including how each phase works at the cellular level and why each step is necessary Being written for a layperson so that patients can share them with loved ones who want to understand the treatment “Most “Most people people are are going going to to be be so so overwhelmed overwhelmed I I think think that that they're they're going going to to have have to to circle circle back back around around aa number number of of times times to to come come to to an an understanding understanding of of how how [the [the treatment treatment is] is] going going to to work. work. And And so so that's that's why why [it’s [it’s important important to to have] have] it it on on the the website website where where they they can can click click through through as as many many times times they they want want to to look look at at it.” it.” -- Doctor Doctor CancerSupportCommunity.org “[Patients “[Patients have] have] told told me me that that explaining explaining to to family family and and friends friends [is] [is] exhausting exhausting to to them, them, and and ifif they they just just had had something something that that they they could could be, be, 'look 'look at at this this link, link, this this is is what.my what.my treatment treatment is,’ is,’ things things they they can can hand hand out.” out.” -- Nurse Nurse 17

Key Findings This diagram represents points in the CAR-T process in which patients and caregivers want more information, resources, or support. Learning Side Initial about Qualification Effects CAR-T How to qualify and what scans/tests are needed How the treatment works; want to hear success stories Timeline Timeline for treatment Info on what side effects to expect; caregivers felt unprepared following infusion CancerSupportCommunity.org Who’s Who? Emotional Support Caregivers want emotional support resources A contact list with names of relevant providers and each person’s role on the team Away from Post home Infusion Outside Resources Unprepared for severe acute CRS symptoms Info about the local area where they will be staying to better plan their stays An exhaustive list of outside resources to help offset costs 18

Needs Assessment Conclusions Much like information needed at the beginning of the development of bone marrow & stem cell transplant, there is a lot of need for services For both patients and providers, treatment-related side effects are top of mind Need extra support around logistics & travel, since so many patients & caregivers will live at a distance from their CAR T center This underscores the importance of developing turnkey education, resources, and tools to help patients and caregivers understand and manage CAR T-related side effects CancerSupportCommunity.org CancerSupportCommunity.org 19

Next Steps Patient/caregiver guide with integrated Patient/Provider discussion tools and treatment planning worksheets Guide will be printed, posted online, and offered to CAR T institutions Journey Map Touchpoints Document Additional eLearning videos Materials integrate support from MyLifeLine CAR T discussion group & CancerSupportCommunity.org CancerSupportCommunity.org specialized 800# for 20

References McConville, H., Harvey, M., Callahan, C., Motley, L., Difilippo, H., & White, C. (2017). CAR T-cell therapy effects: Review of procedures and patient education [Online exclusive]. Clinical Journal of Oncology Nursing, 21(3), E79– E86. https://doi.org/10.1188/17.CJON.E79-E86 Aspiras A, Power NJ, Gonzalo MB (2018) Survey analysis: Assessing the needs of immunotherapy patients, caregivers, and health care providers. Journal of Clinical Oncology 36 (5 suppl):135-135 Saxton C, Amsellem M, Hollen H, Zaleta AK (2017) Educating cancer patients about immunotherapy: Gains from attending a national educational immunotherapy workshop. Society for Immunotherapy of Cancer. National Harbor, MD CancerSupportCommunity.org CancerSupportCommunity.org 21

THANK YOU! For More Information, contact Richa Ruwala at [email protected] To order Frankly Speaking About Cancer materials visit: Orders.CancerSupportCommunity.org 888-793-9355 CancerSupportCommunity.org CancerSupportCommunity.org 22