Barriers to Care Identified and Interventions Provided By Cancer Support Community's Proactive CAR T Navigation Program: Bridging the Gap in Patient & Caregiver Needs
Authors: Costello Karen , Werner Sally , Sweitzer Rylan , Gonzales Bisono Joelys , Saxton Claire 
Published: December 2024

BACKGROUND

Cancer Support Community's (CSC's) Cancer Support Helpline provides proactive navigation for cancer patients and their loved ones by phone, chat, and video conference. Our aim is to empower patients, caregivers, and families to manage social, emotional, practical, and financial barriers to care by proving timely access to education and assistance, through all phases of their cancer experience. With permission from callers, we proactively follow up to help manage key concerns and barriers.

Built on the Expanded Chronic Care Model (ECCM) framework1, our evidence-based navigation program provides patient- and caregiver-centered evaluations and interventions focused on core navigation goals:

• Distress screening & psychosocial assessment

• Identification of barriers

• Coordination of care

• Timely education

• Advocacy

• Social and emotional support

CSC has bilingual Spanish navigators and utilizes a 200+ language interpretation service.

INTERVENTION

CSC has customized our navigation services for CAR T cell therapy patients and caregivers, offering timely resource support, education, and follow up.Program components include:

• Outreach to both CAR T treatment centers and community-based oncology programs creating hospital referral partnerships, eliciting timely referrals

• Proactive patient navigation provided by a licensed oncology social worker at key points of their CAR T experience

• Distress screening and assessment (using CancerSupportSource®, a customized, validated distress screening tool)

• Referrals and linking to support, including referrals to 196 local CSC and Gilda's Club locations for in-person services

• Education on CAR T-related psychosocial concerns such as coping with side-effects, fear of relapse, post-treatment survivorship, and caregiver support

RESULTS

Between March 2022 and June 2024, navigators assisted 73 people in 395 contacts (incoming and outgoing calls and emails). 59% (43) were patients, 18% (13) caregivers, 14% (10) other family and friends, 8% (6) healthcare providers. Ages ranged from 25-89. Of those reporting gender, 65% (41) were women & 35% (22) men. Of those reporting race/ethnicity, 83% (38) were white, 13% (6) Black, 8% (4) Hispanic, and 4% (2) Asian. Cancer types reported were lymphoma 41% (30), myeloma 31% (23), and acute lymphocytic leukemia 4% (3).

Top reasons given for contacting CSC initially:

• CAR T Cell Therapy Education/Information

• Financial Concerns

• Need for Emotional Support

• Lodging Needs

Areas of distress for ≥ 67% of patients, as measured by CancerSupportSource®:

• Worrying about the future

• Health insurance or money worries

• Changes in work home or school life

• Pain and /or physical discomfort

• Feeling nervous or afraid

• Exercising/being physically active

Areas of distress for ≥67% of caregivers, as measured by CancerSupportSource Caregiver®:

• Changes in patients' mood/behavior

• Patients pain/physical discomfort

• Exercising/being physically active

• Managing household finances

• Feeling sad or depressed

• Worrying about future/what lies ahead

• Feeling lonely or isolated

Top Barriers to Care Identified:

• Emotional Well-Being Barriers (83 barriers identified) - Isolation, Lack of access to support, Anxiety, Depression, Managing caregiving and other duties.

• Financial (61) - Rx and Copay Assistance, Lodging and Transportation for Treatment, Assistance with Household Bills

• Symptom Burden and Impact Barriers (32) - Fatigue, Pain, and Cognitive Changes

Top Navigation Interventions

• Navigation to CAR T Cell Therapy & National Resources (80)

• Emotional support and connecting to short- and long-term counseling support (57)

• Linking to resources for lodging and long-term housing options (34)

SUMMARY

CAR T patients and caregivers had significant unmet needs that could become barriers to care, especially those who had not yet been approved for treatment and were not yet eligible for a specific pharmaceutical company's Patient Assistance Program. Using a proactive model of navigation to provide education and resources to patients and caregivers has allowed CSC to identify some of the key psychosocial and practical barriers to care for the CAR T population.

1 Barr V, Robinson S, Marin-Link B, et al. The Expanded Chronic Care Model: An Integration of Concepts and Strategies from Population Health Promotion and The Chronic Care Model. Hospital Quarterly 2003 7: 72-82. dx.doi.org/10.12927/hcq.2003.16763