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Research Support and Statewide Engagement

The Comprehensive Cancer Support Program (CCSP) supports a statewide network to disseminate public health and clinical research projects to counties across North Carolina.

By using this dissemination approach to partner with health care providers across the state, we directly provide cancer survivors with evidence-based interventions in their home communities and create the capacity to deliver additional cancer-related programs in the future.

The CCSP research portfolio includes a broad range of studies:

  • A clinical trial focused on cancer-related cognitive impairment (Principal Investigator: Zev Nakamura, MD)
  • The impact of cancer on parenting (Principal Investigator: Eliza Park, MD)
  • A multi-site intervention to address financial toxicity related to cancer (Principal Investigators: Donald Rosenstein, MD, and Stephanie Wheeler, PhD, MPH; NCI 1R01CA240092-02)
  • Health coaching (Principal Investigator: Bill Wood, MD, MPH)
  • Cancer caregiving (Principal Investigators: Erin Kent, PhD, and Leeza Park, MD)
  • Cancer survivorship (Principal Investigator: Deb Mayer, RN, PhD);
  • Access to care for breast cancer patients (Principal Investigator: Cindy Rogers, JD)
  • Frailty in adolescent and young adult (AYA) oncology patients (Principal Investigator: Andrew Smitherman, MD)
  • The development of a support program for AYA patients transitioning from treatment to cancer survivorship (Principal Investigator: Carmina Valle, PhD, MPH)

CCSP faculty have also been asked to serve as co-investigators on several federal grants submitted this year by investigators at universities across the country.


Current Statewide Research Focus

Financial Toxicity

Financial toxicity, a term used to describe the high cost and cost-related emotional/psychosocial burden that cancer care places on patients and their families, is a major and underappreciated problem affecting at least 30% of all cancer patients.

LIFT: Lessening the Impact of Financial ToxicityThe purpose of this study (1R01CA240092-01; 3P30CA016086-44S4) is to enroll patients with cancer who have financial distress, connect them with a financial navigator and provide support to ease that financial burden. We will then evaluate this program to see if it lowers financial distress, improves quality of life, and whether participants liked the program.

The financial burden of cancer has been linked to:

  • Lower quality of life
  • Greater psychological distress
  • Delayed or discontinued treatment
  • Bankruptcy
  • Mortality

 

Map of North Carolina counties, with 20 counties highlighted to indicate participation in the NC Cancer Survivorship Professionals Action Network.
Blue-shaded counties are counties that have an organization that is participating in our NC Cancer Survivorship Professionals Action Network (NC-CSPAN).

(*) denotes counties that have a rural organization participating in this Financial Navigation Program.

(+) denotes counties that have a non-rural organization participating in this Financial Navigation Program.

 

Rural Community Partners

  • Carteret Health Care Cancer Center
  • Nash UNC Health Care
  • The Outer Banks Hospital
  • Lenoir UNC Health Care
  • Pardee UNC Health Care

Non-Rural Community Partners

  • CarolinaEast Health System
  • Novant Health
  • Vidant Medical Center
  • Wake Forest University Health Sciences
  • N.C. Basnight Cancer Hospital

For more information about this study, contact Michelle Manning, MPH, at mmanning@unc.edu or Mindy Gellin at mindy_gellin@med.unc.edu


Financial Toxicity and Access to Care for Rural Cancer Survivors

This research study is a companion to the LIFT study. Specifically, this research (3R01CA240092-03W1) examines the relationships between financial toxicity, quality of life, insurance coverage, workforce participation, and patterns of healthcare use among a cohort of rural N.C. cancer survivors.

The study applies a combination of quantitative and qualitative methods to understand and evaluate health care help-seeking behaviors in the nested contexts of health care policies, health care systems, and socio-ecological factors navigated by rural cancer survivors.

For more information about this study, contact Arrianna Planey, PhD, at amplaney@email.unc.edu


Current Statewide Program Focus

Financial Toxicity

In addition to research, the cost of cancer care is a current program focus as well.

Our Patient Assistance Fund has received program grants from the American Cancer Society to assist patients with lodging support during treatment and with transportation costs if they meet the program’s eligibility criteria.

The transportation grant is for the N.C. Basnight Cancer Hospital, as well as eight other organizations across the state including our Hillsborough location (Orange County), UNC Lenoir (Lenoir County), UNC Health Southeastern (Roberson County), Nash UNC Health Care (Edgecombe/Nash Counties), UNC Johnston (Johnston County), UNC Rex Health Care (Wake County), UNC McCreary (Caldwell County) and UNC Rockingham (Rockingham County).

For more information about this program, contact Cindy Rogers, JD, at cdrogers@email.unc.edu


Additional Collaborations

Listed here is a brief summary of the team’s other collaborations over the last decade.

LIFT: Lessening the Impact of Financial Toxicity2019-2023

Addressing Cancer-Related Financial Toxicity In Rural and Non-Rural Oncology Care Settings NCI R01 & P30 Administrative Supplement

We were fortunate to be awarded two National Cancer Institute grants to study financial toxicity in both rural and non-rural areas of North Carolina:

  1. The National Cancer Institute awarded a four-year grant to Stephanie Wheeler, PhD, MPH, and Donald Rosenstein, MD, and to study the impact of implementing financial navigation services at five rural cancer centers in North Carolina to help patients cope with the financial burden, or financial toxicity, related to cancer care.
  2. The National Cancer Institute awarded Wheeler and Rosenstein a one-year Administrative Supplement to study this issue among four additional communities in the state that were not rural in order to compare any differences between the LIFT program in rural versus non-rural settings.

The goal of both of these studies is to evaluate the implementation and effectiveness of a financial navigation intervention for 700 cancer patients within five rural and four non-rural North Carolina oncology settings.

Together, these two studies form LIFT: Lessening the Impact of Financial Toxicity. Additional information can be found at cancercosts.org.


2018-2019

N.C. Healthcare Center for Innovation: Improving Financial Navigation Services in the North Carolina Hospital – a Model for the UNC Health Care System

In March 2018, Stephanie Wheeler, PhD, MPH, and Donald Rosenstein, MD, were awarded a UNC Healthcare Innovation Grant to deploy a financial navigation (FN) intervention within the N.C. Cancer Hospital designed to decrease financial toxicity among N.C. Cancer Hospital patients.

Financial navigators underwent several weeks of intensive orientation and training on financial issues relevant to cancer patients. Trained financial navigators then provided one-on-one financial distress screening and on-site consultation with patients to determine their eligibility for various financial aid resources and assist with application completion and submission.

Financial navigators kept detailed records on patient progress and outcomes. Financial navigator materials from this project, including training manuals, referral processes, and forms served as the building blocks for the current LIFT study.


2014-2015

Susan G. Komen Lymphedema Project

In 2014-2015, the CCSP research support and statewide engagement team conducted a program funded by the Susan G. Komen Triangle to the Coast Affiliate to increase breast cancer patient access to lymphedema (LE) care and education, in 15 N.C. counties, developed a comprehensive Lymphedema Self-Care Workbook and a companion DVD, and provided professional education and networking for lymphedema therapists across N.C.


2014-2017

North Carolina Cancer Survivorship Professionals Action Network (NC-CSPAN)

In 2014, our team developed NC-CSPAN to facilitate cancer survivorship programs across North Carolina, through a grant from The Duke Endowment.

A conference table of people meeting at a NC-CSPAN event.This statewide network still exists today and consists of health professionals (nurses, health educators, social workers and other cancer support professionals) employed and endorsed by their local cancer organizations, including nine providers in rural areas.

The providers were trained to deliver Cancer Transitions: Moving Beyond Treatment® to N.C. cancer survivors and caregivers in their community.

Network events include attending an annual continuing education conference focused on various cancer survivorship topics such as diet, exercise, and financial toxicity, as well as, time to network with oncology professionals across N.C.

In 2015, our community partners across the state voted for addressing financial toxicity as our next statewide research topic. Since then, the CCSP Research Support & Statewide Engagement Team has focused heavily on addressing and developing novel approaches to lessen financial toxicity in rural and urban areas of our state.

­Learn more about the Finding Wellness After Cancer program (formerly Cancer Transitions)


2016

The Cultural Adaptation of Cancer Transitions for Spanish Speaking Patients

Cover of the "Ahora que" guidebook

The Research Support and Statewide Engagement team led a collaborative project between UNC, LIVESTRONG, and the Cancer Support Community (CSC) to culturally adapt the Cancer Transitions® program for the Latino cancer survivor population.

Focus groups were held with Latino cancer survivors in NC, TX, FL, and NY to determine areas for adaptation and develop the adapted program curriculum and companion facilitator guide. This project dovetailed with the above mentioned Duke Endowment grant so we were able to offer Cancer Transitions® across North Carolina to Spanish-speaking Latino cancer survivors.This new program, ¿Ahora qué? la vida después del tratamiento de cáncer, includes a facilitator guide and patient workbook, and is now available through the Cancer Support Community to support Latino/a cancer survivors and caregivers across the country.


Internship Opportunities

If interested in internship opportunities with the Statewide Engagement team, please send your resume and cover letter to mmanning@unc.edu


Team

Statewide Engagement Program Coordinator

Statewide Engagement Staff


Contact

For more information about the CCSP Statewide Engagement team, please contact:

Michelle Manning
Email: mmanning@unc.edu
Phone: (919) 843-8506