Jeneth Aquino, APRN, DNP, FNP-BC1; Julie Clauer, MBA2; Khadijah Ameen, MPH3; Kim Newcomer4; David Fenstermacher, PhD4; Andrea Incudine, MPH5; Kathy Steinberg, BS6; Amy Mulvey, BBA6; Ashley Geiger, PhD7; Ashley V. Calabrese, MBA8
1Vanderbilt University School of Medicine, Nashville, TN; 2COLONTOWN, Crownsville, MD; 3BLKHLTH, Atlanta, GA; 4Colorectal Cancer Alliance, Washington, DC; 5Family Reach, Boston, MA; 6Harris Poll, Chicago, IL; 7Takeda Development Center Americas, Lexington, MA; 8Takeda Pharmaceuticals, Lexington, MA
Background: The impact of metastatic colorectal cancer (mCRC) extends beyond the physical health of patients, affecting their quality of life (QOL) and overall healthcare experience. As well as the need for individualized care and treatment for patients with mCRC, improved access to informational resources and community support services is essential.
Objective: To identify gaps in the types of information and support available to patients with mCRC in the United States.
Methods: Adults (aged ≥18 years) with stage IV colon, rectal, or colorectal cancer participated in an online survey conducted in the United States by The Harris Poll between January 17 and February 7, 2024. Of 344 patients who qualified for the survey, 254 were recruited via online panels and 90 were recruited from advocacy groups (ie, BLKHLTH, COLONTOWN, Colorectal Cancer Alliance, and Family Reach). The survey comprised 60 questions to inform on patient profile, diagnosis experience, the role of patient advocacy groups (PAGs) and other resources, QOL, access to care and financial challenges, discrimination, and treatment experience.
Resultant raw data were not weighted and are only representative of those who participated. Sampling precision of Harris online polls is measured using a Bayesian credible interval. In this study, sample data are accurate to within 5.3% using a 95% confidence level. However, such surveys are subject to errors associated with nonresponse, question wording, or response options.
Results: All 344 patients (mean age, 56 years; 55% male; 46% White, 25% Black, 22% Hispanic) completed the survey. Overall, 83% of respondents wished for more information about mCRC at initial diagnosis and 45% wanted more information about financial assistance programs. Most (79%) respondents had heard of mCRC PAGs (including 75% who were not recruited via PAGs), while 24% of those who had heard of PAGs had not relied on the groups for any type of support. Fewer Black (9%) respondents were “very familiar” with PAGs than White (22%) and Hispanic (27%) respondents. Of all participants, 19% wished for more support from PAGs throughout their treatment, while 17% had relied on PAGs to help guide their treatment decisions. Although most respondents (85%) agreed that they knew where to obtain answers about their treatment/general care, nearly half (43%) reported that they did not know where to go to connect with others with mCRC at diagnosis.
Conclusion: Gaps in provision of timely information and the role of PAGs exist among patients with mCRC. The results of this survey indicate a need or opportunity for clear and accessible information, particularly on financial assistance programs; more information at diagnosis on PAGs, particularly among Black patients (specifically on how patients can connect with other patients with mCRC); and PAGs to provide more support around treatment decisions.
Nurses and patient navigators should endeavor to connect patients with mCRC with PAGs and financial assistance programs.
Silpi Sinha Ray; Atrayee Basu Mallick, MD; Jackie Miller; Valerie Csik
Sidney Kimmel Comprehensive Cancer Center, Thomas Jefferson University Hospital, Philadelphia, PA
Background: The Sarcoma Multidisciplinary Clinic (MDC) at SKCCC provides integrated care through collaboration among oncologists and surgeons. A patient navigator enhances outcomes by offering personalized support, reducing barriers to care,1,2 and serving 6.23 million people across Pennsylvania, New Jersey, and Delaware.
Objective: Enhance multidisciplinary care coordination and improve the sarcoma patient experience by integrating ongoing patient navigator support.
Methods: A patient survey was conducted among new patients of the clinic to assess their experiences and satisfaction levels. The sarcoma multidisciplinary team leaders reviewed the survey results and determined that a dedicated patient navigator would be integrated into the sarcoma tumor board and MDC to identify specific challenges, and thus, designed a tailored patient navigation program.
The sarcoma patient navigator is supported by personalized training and education from The George Washington University School of Medical and Health Sciences.3 The primary focus is on identifying patient barriers (eg, financial status, medical insurance, family support, disability, and transportation) and evaluating ways to reduce them. Patients also receive comprehensive assistance in navigating complexities of their treatment, scheduling appointments, collecting medical records, coordinating multidisciplinary care, and accessing social support services. The patient navigator also completes distress screening of mental and emotional health.
Through a multidisciplinary approach, including biweekly tumor board meetings and collaboration with an external orthopedic center, the patient navigator assists in coordinating care at the MDC.
Results: The Sarcoma MDC at SKCC has had a 70% increase in new patient enrollment over the past year following the integration of a navigator program, positioning it as a leading sarcoma center in the United States. A minimal no-show rate (2.6%) compared with 16.5% the year before is directly related to the support provided by patient navigation services. Integration of a patient navigation program further enhances the patient’s experience, providing personalized support and streamlining care delivery. This combined approach improves treatment outcomes and overall quality of care for patients with sarcoma.
A patient survey revealed that clear communication with navigators and comprehensive support—including appointment scheduling and barrier assessment—resulted in high satisfaction and ongoing treatment at the hospital.
Conclusion: The outcomes demonstrate the success of integrating a patient navigation program into the multidisciplinary care approach at the Sarcoma MDC at SKCCC.
By combining a multidisciplinary approach with dedicated patient navigation and access to specialized clinicians, efforts are made to optimize treatment outcomes, improve the patient experience, and ultimately enhance the quality of care for individuals affected by sarcoma in the tristate area. The significant increase in patient enrollment reflects the navigator’s empathetic and resourceful engagements with the patients, as well as the center’s reputation for excellence in sarcoma treatment.
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