Category III: Patient Advocacy/Patient Empowerment

October 2022 Vol 13, No 10 —November 7, 2022
  C1 Healing with Butterflies: Implementing Thyroid Cancer Support Group
Tura Coombs, BSN, RN; Elizabeth Wigozki, MSN, RN, OCN, CNL

Dana-Farber Cancer Institute, Boston, MA

Background: Oncology nurse navigators are in a position to be able to identify patients who would benefit from a support group due to their relationships with patients throughout their cancer care continuum. Thyroid cancer patients were identified within the Head and Neck Oncology Center at Dana-Farber Cancer Institute (DFCI) as needing a specific support group due to their unique needs. Although the average incidence rate of thyroid cancer is 14.1 per 100,000, thyroid cancer was the most rapidly growing cancer in the United States due to increased detection.1,2 Support group structure can vary, but it was essential for them to be adaptable during the onset of the COVID-19 pandemic. Evidence has shown that there are benefits and enhanced quality of life for head and neck patients who have participated in support groups.3 DFCI thyroid cancer patients reported feeling a lack of support in their community, which led to the development of an adaptable support group for thyroid cancer patients and caregivers at DFCI.

Objective: To create and build a support community for thyroid cancer patients utilizing art therapy.

Methods: With the onset of the COVID-19 pandemic in 2020, formulating a support group for patients was a priority. The Thyroid Cancer Center (TCC) at DFCI was created in 2020. It established a virtual support group and developed welcome packets that included thyroid cancer pins and resources within DFCI. Educational sessions were incorporated into the support groups with topics that included nutrition, pet therapy, and alternative therapies such as acupuncture, mindfulness, and meditation. In 2021, the TCC initiated a therapeutic creative arts approach in conjunction with the support group. Patients and families were given the opportunity to personalize paper butterflies made in the colors of the Thyroid Cancer Ribbon, which incorporated tributes, gems, inspirational quotes, and anecdotes of what DFCI means to them. The butterflies were displayed on a board known as the “Butterfly Garden.” This enabled patients and their families to express themselves creatively and feel part of the community.

Results: Patients who participated in the Butterfly Garden reported feeling more supported. Speaking with other patients who were going through similar treatment plans and symptoms reduced feelings of isolation and improved communication between patients and their care team. Patients expressed that this was a reminder that they were not alone in their journey. The Butterfly Garden also served as a pleasant visual display.

Conclusion: The thyroid is shaped like a butterfly, representing change, growth, hope, and beauty. TCC patients are resilient and constantly adapting to changes in their disease status and treatment plan. This can be incredibly challenging, but there is beauty and hope in change. The Butterfly Garden was specifically designed for patients and their families as a creative outlet to promote beauty and hope. It provides a community of support and resources that improves the patient’s experience, quality of care, and emotional well-being. The success of the TCC has created a foundation to create additional support programming across DFCI.


  1. American Cancer Society. Key Statistics for Thyroid Cancer. 2022.
  2. American Cancer Society. Cancer Statistics Center. Thyroid at a Glance. 641662937.1652728750#!/cancer-site/Thyroid. 2022.
  3. Hu A. Reflections: the value of patient support groups. Otolaryngol Head Neck Surg. 2017;156:587-588.

Return to Top
  C2 Knowledge Is Power: Designing an Educational Program to Support Black Breast Cancer Patients
Jamil Rivers1; Tiah Tomlin-Harris2; Monique Gary, DO, MSc, FACS3; Arin Ahlum Hanson, MPH4; Catherine Ormerod, MSS, MLSP4; Janine Guglielmino, MA4; Stefanie Washburn, MSW, LSW4

1The Chrysalis Initiative; 2My Style Matters, Inc.; 3Grand View Health; 4Living Beyond Breast Cancer

Background: Death rates for Black women with breast cancer are 41% higher than those for White women. Reasons for this disparity include more advanced stage at diagnosis, higher prevalence of obesity and other comorbidities, unfavorable tumor characteristics, and lower access to high-quality healthcare.1

Objectives: To address this health disparity, a Living Beyond Breast Cancer (LBBC) board member in 2019 recommended designing an educational program for Black patients. In 2020, LBBC launched the Knowledge is Power educational series to address the unique experiences of Black women with newly diagnosed breast cancer, with the overarching purpose to address healthcare disparities among Black people. The first year focused on early-stage and metastatic breast cancer, implicit and explicit biases, and the importance of self-care and community. In 2021, the focus turned to thriving beyond a diagnosis of breast cancer.

Methods: LBBC convened an advisory council of 10 Black community leaders with expertise in oncology, healthcare disparities, social and practical support, and advocacy. Most had a personal history of breast cancer. A consultant managed the project. The advisory council met monthly to develop content, format, outreach, and speaker recommendations for the 2020 and 2021 programs. Because of the pandemic, the program was offered virtually. An evaluation was designed, and participants received an e-mail prompting them to offer feedback after each session.

Results: The programs were delivered in the fall of 2020 and 2021. Speakers were Black clinicians, social workers, researchers, and advocates. The first session in 2020 was an on-demand video offering guidance to recently diagnosed Black breast cancer patients. Three live sessions were delivered weekly on the topics of identifying barriers to accessing care for early-stage and metastatic breast cancer. The remaining sessions focused on self-care and advocacy. LBBC registered 436 people, 307 of whom identified as Black. Of participants who completed program evaluations, 75% reported an increase in knowledge of breast cancer, 82% reported increased confidence to have conversations with loved ones or healthcare providers, and 85% reported learning strategies to address implicit and explicit bias.

In 2021, 3 live sessions were delivered weekly. They were candid conversations with Black women about their experiences with implicit racial bias and health inequalities, self-care principles, and body image and self-love. LBBC registered 734 people (a 68% increase over 2020), 521 of whom identified as Black (a 70% increase over 2020). Program evaluations showed 84% of respondents reported increased knowledge of strategies to address bias in healthcare settings, 90% reported increased understanding of strategies for self-care, and 80% reported increased knowledge about managing body image and self-love.

Conclusions: A multi-year educational program designed and led by Black healthcare professionals and patients can be successfully delivered in a combination live and virtual content format to improve knowledge, communication skills, and feelings of self-efficacy for Black people with breast cancer. The quality of the program and opportunities for learning increased over time. LBBC and the council are now planning the 2022 Knowledge is Power program, scheduled for late October and November.

Acknowledgments: This program was supported by Abramson Cancer Center at Penn Medicine, AmeriHealth Caritas, AmerisourceBergen, AmerisourceBergen Foundation, Amgen Oncology, AstraZeneca, Athenex Oncology, Basser Center for BRCA, Bristol Myers Squibb, Daiichi-

Sankyo, Eisai, Exact Sciences, Foundation Medicine, Genentech, Gilead, The Haverford Trust Company, Immunomedics, Lilly Oncology, Mentor, Merck, Natrelle, Novartis, Pfizer, Pfizer Pennsylvania Community Grants, Protiviti, Puma Biotechnology, Sanofi Genzyme, Seagen, Sidney Kimmel Cancer Center – Jefferson Health, and Univest.

An abstract and poster on the 2020 Knowledge is Power series were accepted by the 2021 San Antonio Breast Cancer Symposium.


  1. American Cancer Society. Cancer Facts & Figures for African American/Black People 2022-2024. Atlanta, GA: American Cancer Society, 2022.

Return to Top
C3 Legal & Financial Navigation Program Provides Individualized Education to Healthcare Teams to Support Patients and Caregivers
Nicole Jolicoeur, Esq; Joanna Fawzy Morales, Esq, CEO; Monica Fawzy Bryant, Esq, COO

Triage Cancer, Chicago, IL

Background: Triage Cancer’s Legal & Financial Navigation Program (LFN) assists individuals coping with cancer, their caregivers, and healthcare professionals as they navigate the legal, financial, and practical issues that arise after a cancer diagnosis. Members of the healthcare team are rarely trained on the cancer-related legal issues impacting their patients and are thus ill-equipped to answer complex questions on these topics.

Researchers at Duke University coined the term “financial toxicity” to refer to the financial burden of a cancer diagnosis. Financial toxicity is linked with lower quality of life and treatment compliance, and increased symptom burden. Cancer patients must manage treatment, while also trying to decipher health insurance coverage, navigate employment, pay their bills, and handle other daily life challenges. These are all contributing factors of financial toxicity.

Even if someone has access to clinical navigation services, it is unlikely they are getting in-depth guidance on employment, disability insurance, or even health insurance options. The LFN provides a unique solution to an otherwise unmet need, improving the financial, mental, and physical health of individuals coping with cancer through individualized education on relevant topics.

Healthcare professionals contact the LFN on behalf of specific patients, get answers to general questions, and refer patients to the LFN. The LFN educates individuals on the laws that may be relevant and the practical next steps to navigate situations, providing a foundation for patients to advocate for themselves.

Objectives: To provide accurate information on the legal and financial issues that arise after a cancer diagnosis to individuals nationwide, thereby increasing access to quality care and minimizing financial toxicity.

Methods: LFN provides one-on-one navigation regarding cancer-related legal and financial issues. Triage Cancer has the expertise to provide healthcare teams, individuals diagnosed with cancer, and caregivers with systemic solutions to mitigate financial toxicity and access to care issues. Through the LFN, healthcare providers are educated on relevant issues so that they can provide accurate information to patients. In addition, healthcare providers refer patients to the LFN. These patients receive one-on-one education, empowering them to evaluate options and choose next steps.

Results: In 2021, Triage Cancer provided consultation to 926 callers, including 522 individuals diagnosed with cancer, 158 caregivers, and 158 healthcare professionals. In a follow-up survey, 97.5% of survey responders reported that they felt better prepared with regard to their options, and 91.67% agreed or strongly agreed that they had actionable next steps after an LFN call. In 2022, Triage Cancer expanded the LFN to benefit more callers through increased staffing.

Conclusion: Healthcare professionals feel better prepared to help patients face situations and have actionable steps to move forward after an individualized consultation about the financial and legal issues the patients are facing due to their cancer diagnosis.

Disclosures: The Legal & Financial Navigation Program is supported by Novartis, Novartis STEP Program, Eisai, Daiichi-Sankyo, Bristol Myers Squibb, and Genentech. However, these companies do not have input into the delivery of the program.

Return to Top  
C4 Navigating Chronic Lymphocytic Leukemia: The Critical Importance of the First 90 Days
Emily Gentry, BSN, RN, HON-ONN-CG, OCN; Chelsea C. Passwater, DNP, RN, AGCNS-BC, OCN; Nikki L. Barkett, BSN, RN, OCN

Academy of Oncology Nurse & Patient Navigators, Cranbury, NJ

Background: Chronic lymphocytic leukemia (CLL) is the most common adult leukemia, with an estimated 21,250 new cases and 4320 attributed deaths in 2021.

The natural history of CLL is variable, with survival estimates ranging from approximately 2 to 20 years. Most patients with CLL follow a “watch-and-wait” approach, whereby the progression rate of disease is determined, and then the patient is assessed for symptom development periodically.

As a result of this approach, patients can develop and hold a lot of fear and anxiety. From a navigator perspective, it is critical to ensure that CLL patients are well-

educated so they understand the importance of follow-up and follow-through.

The Academy of Oncology Nurse & Patient Navigators (AONN+) published a paper on key steps navigators can take within the first 90 days of a CLL diagnosis to help patients and their caregivers understand their prognosis and treatment options, which continue to evolve.

The paper was created under the umbrella of AONN+’s Cancer Advocacy & Patient Education (CAPE) initiative. To understand whether patient navigators absorbed key learnings from the paper, AONN+ conducted a survey of navigation personnel.

Survey Objectives: To determine whether (1) navigators’ knowledge related to patient care needs of CLL patients would be enhanced, and (2) navigators’ understanding of navigating patients diagnosed with CLL would be helped.

Methods: A 15-question survey was distributed to 12,004 healthcare team members, with 11,453 delivered and 3214 opened (open rate of 28%). Participants who completed the survey were entered into a drawing for a chance to win 1 of 25 $20 Amazon gift cards.

Results: The respondent mix included 13 oncology nurses or advanced practice nurses and 25 nurse/patient navigators. Approximately 16% of respondents had worked in the profession less than 5 years, and approximately 53% had worked in the profession for more than 15 years. In looking at the respondents’ practice locations, the survey showed that 39% of respondents were with hospital-affiliated outpatient clinics, 3% were with academic teaching hospitals, 39% were at community hospitals, 8% worked in private practice settings, and 11% were in stand-alone outpatient clinics.

With respect to the article’s impact, 97% of respondents either agreed or strongly agreed that the article improved their understanding of navigating patients diagnosed with CLL; 100% of the respondents would recommend the article to others.

The respondents offered other topics for future articles, including updates on National Comprehensive Cancer Network guidelines, best practices for a multidisciplinary approach to cancer patient care, and side effect management of immunologic or targeted therapies.

Conclusions: Given the wide variation in the disease progression of CLL, it is not surprising that CLL patients need significant support from patient navigators. No matter the length of time in the profession or clinical location, all survey respondents indicated the CLL article was a useful educational tool. While the article was deemed to be a useful tool to aid current navigation practice, the survey indicated an ongoing need within the navigation community for regular updates on new developments with CLL treatments and treatment guidelines.

Acknowledgments: Sponsored by Janssen and Pharmacyclics.


American Cancer Society. Key Statistics for Chronic Lymphocytic Leukemia. 2022.

Gribben JG. How I treat CLL up front. Blood. 2010;115:187-197.

Scarfò L, Ferreri AJM, Ghia P. Chronic lymphocytic leukemia. Crit Rev Oncol Hematol. 2016;104:169-182.

Return to Top
Related Articles
Our Health History Is in the Stories We Tell Within Black and Brown Families
Maimah Karmo
May 2023 Vol 14, No 5

With National Black Family Cancer Awareness Week (June 15-21, 2023) on the horizon, it is paramount to acknowledge the pivotal role that nurse navigators play in educating and empowering patients and their loved ones—to include fostering candid and transparent conversations about family health history, knowing our bodies, risk reduction, and proactive cancer screenings. As a breast cancer survivor and founder of the Tigerlily Foundation, I am a testament to the profound, lifesaving impact of these conversations. My mother was a nurse, and I often say that she gave me life and saved my life. Here’s how.

LBA Category III: Patient Advocacy/Patient Empowerment
October 2022 Vol 13, No 10
Patient Advocacy Changes in a COVID-19 World
March 2022 Vol 13, No 3
Last modified: August 10, 2023

Subscribe Today!

To sign up for our print publication or e-newsletter, please enter your contact information below.

I'd like to receive:

  • First Name *
    Last Name *
    Profession or Role
    Primary Specialty or Disease State