Abstract

Improving access to and quality of care for blood cancer patients: Two navigation programs from a patient advocacy organization

Caroline Husick, MPH1, Nikie Sarris Esquivel, MPH2, Laura Arena, MPH3, Katherine Treiman, PhD, MPH4, Michael Halpern, MD, PhD5, Catherine Gupta, PhD2, Maria Sae-Hau, PhD6, Kate Disare, MPH6, Meredith Barnhart, LCSW-R6, Alissa Gentile, MSN, RN7, Leah Szumita, MSN, CCRN7 and Elisa Weiss, PhD6
(1)RTI International, Waltham, MA, (2)RTI International, Research Triangle Park, NC, (3)RTI International, Durham, NC, (4)RTI International, Rockville, MD, (5)Healthcare Delivery Research Program, National Cancer Institute, Bethesda, MD, (6)The Leukemia & Lymphoma Society, Rye Brook, NY, (7)Leukemia & Lymphoma Society, Rye Brook, NY

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Background. The Leukemia & Lymphoma Society (LLS) has two programs supporting blood cancer patients and their caregivers. The Information Resource Center (IRC) provides access to individualized information and support services by masters-level oncology professionals. The Clinical Trial Support Center (CTSC), a nurse-led navigation service, accelerates awareness of and access to clinical trial options among blood cancer patients. RTI evaluated these programs to examine how they meet patients’ and caregivers’ emotional and informational needs.

Methods. The IRC evaluation consisted of an online survey of patients and caregivers who interacted with the IRC via telephone in spring 2018 (n=515) and a follow-up online survey (n=252). The CTSC evaluation consisted of an online survey of patients and caregivers who interacted with a CTSC Nurse Navigator between May 2018 and April 2019 (n=474). Both surveys were supported by in-depth, qualitative interviews with subsets of survey respondents.

Results. Both services eliminate barriers to care for blood cancer patients. After IRC interactions, respondents reported feeling more confident in managing care (82.9%) and more knowledgeable about their diagnosis (49.5%) and financial resources (42.4%). Those with repeated contact with the IRC were significantly more likely than those with one interaction to report a positive impact on communication with their doctor/healthcare provider (p=0.017 and p=0.033, respectively) and advocating for themselves or their loved one (p=0.037 and p=0.039, respectively). Respondents reported that CTSC Nurse Navigators were helpful in providing information about clinical trial options (90.2%) and clinical trials participation (92.3%). Qualitative themes yielded similar findings and indicated the importance of ongoing follow-up.

Conclusions. The IRC and CTSC are effective approaches for empowering and reducing barriers to care for blood cancer patients. Future efforts should focus on expanding access to a broader population of blood cancer patients and caregivers. This model can be replicated to support patients with other diseases.

Chronic disease management and prevention Conduct evaluation related to programs, research, and other areas of practice Diversity and culture Implementation of health education strategies, interventions and programs Public health or related nursing