- C1. Cost-Effective, Accessible, and Efficient Purèed Whole Food Using Percutaneous Endoscopic Gastrostomy Tube/Gastrostomy Tube During Radiotherapy Treatment for Head and Neck Cancers
- C2. Evaluation of the Leukemia & Lymphoma Society’s Information Resource Center: A Model of Education and Support Services for Blood Cancer Patients and Their Caregivers
- C3. Legal and Financial Navigation Program Provides Individualized Education to Empower Patients and Support Self-Advocacy
- C4. The Sexual Health Needs of Young Women Affected by Breast Cancer
C1 Cost-Effective, Accessible, and Efficient Purèed Whole Food Using Percutaneous Endoscopic Gastrostomy Tube/Gastrostomy Tube During Radiotherapy Treatment for Head and Neck Cancers
Caprina Tomlinson, RN
RWJBarnabas Health, Newark Beth Israel Medical Center, Fred B. Cohen Cancer Center, Newark, NJ
Background: Head and neck cancer (HNC) is a common malignancy that includes the oral cavity. Low-income patients experience barriers related to the high cost of commercial nutritional supplements. Therefore, exploring cost-effective, accessible, nutritious alternatives to commercial feeding for low-income HNC patients with percutaneous endoscopic gastrostomy tubes (PEG tubes)/gastrostomy tubes (G tubes) supports improved outcomes and adherence.
Objective: The HNC navigator will (1) explore access to alternate nutrition for low-income and charity care patients; (2) monitor patients to sustain patient weight during treatment; and (3) preserve the quality of life with food preparation and taste perception.
Methods: A literature review showed few evidence-based results on alternate feeding methods for HNC patients. Commercial formula barriers include product cost and decreased psychological importance of the sensory experience in food preparation. In collaboration with the oncology dieticians, the HNC navigator explored feeding methods for PEG/G-tube populations that meet the needs of low-income and rural patients, and those choosing not to use formula. Using a blender as an alternate supplemental feeding method showed promise, and the dieticians investigated various blenderized, whole-food formulas to sustain adequate nutrition. Key performance indicators include tracking the patient’s weight for consistency when using a blenderized food regimen and surveying the patient’s satisfaction.
Results: The pilot study shows that the patients maintained positive nutritional status throughout radiotherapy (RT). Patients could afford whole-food ingredients to make the blenderized formula. The patients reported that they did not skip feedings due to cost factors. Patients reported easy access to whole-food ingredients using typical retail markets. Patients also maintained a stable weight throughout treatment. The absence of malnourishment was validated with laboratory testing. Patients maintained nutrition throughout RT with blenderized food until normal swallow function was re-established. Patients expressed reduced distress, avoiding the cost of commercial formula and having the convenience of traditional grocery stores. This finding was important as patients did not have access to purchasing commercial formulas in emergent situations or without medical provider intervention. Preparing whole food for PEG/G tubes empowered patients to participate in their care with provided tools. Patient education can prevent malnutrition and weight loss commonly associated with HNC treatment.
Conclusion: Patients with HNC who have PEG/G tubes can use whole, blenderized nutrition as a cost-effective and healthy alternative to formula feedings. Decreased expense and improved access while maintaining weight/nutrition made blenderized, whole-food regimens an appropriate alternative to commercial-formula feedings. Implications beyond this study could reduce the cost of formula and improve quality of life by reducing stressors for all patients requiring PEG/G-tube feedings. Blenderized food has implications for patients who live in rural areas with decreased access to formula, as well as for patients who prefer a more holistic approach.
Sources
Ichikura K, Nakayama N, Matsuoka S, et al. Efficacy of stress management program for depressive patients with advanced head and neck cancer: a single-center pilot study. Int J Clin Health Psychol. 2020;20(3):213-221. doi: 10.1016/j.ijchp.2020.06.003
Riantiningtyas RR, Carrouel F, Bruyas A, et al. Oral somatosensory alterations in head and neck cancer patients—an overview of the evidence and causes. Cancers. 2023;15(3):718. Accessed July 7, 2023. https://doi.org/10. 3390/cancers15030718
Return to TopC2 Evaluation of the Leukemia & Lymphoma Society’s Information Resource Center: A Model of Education and Support Services for Blood Cancer Patients and Their Caregivers
Juliet D. Sheridan, MPH; Nikie Sarris Esquivel, MPH; Caroline Husick, MPH; Maria Sae-Hau, PhD; Nikki Yuill, LCSW; Michelle Rajotte, LMSW; Kate Disare, MPH; Danielle Lowthert, BA; Elisa Weiss, PhD
RTI International, Research Triangle Park, NC
Background: The Leukemia & Lymphoma Society’s (LLS) Information Resource Center’s (IRC) free services are delivered by information specialists—highly trained oncology social workers and nurses who connect patients and caregivers with financial, emotional, and social support resources, and provide comprehensive disease- and treatment-related information.
Objective: To assess the IRC model of education and support for blood cancer patients and their caregivers in terms of their experiences with the IRC: specifically, how well IRC services met patient/caregiver needs; the services’ impact on psychosocial outcomes and health-related actions and decisions; and whether experiences varied between Spanish-speaking and English-speaking participants.
Methods: A web-based survey was sent to 1711 English- speaking and 70 Spanish-speaking patients and caregivers, 18 years or older, who live in the United States and communicated with an information specialist via phone, email, or chat from September through November 2022; surveys were sent within 2 weeks of contact. All nonresponders received a follow-up email 3 days after the initial survey invitation and a final email reminder 1 week after the initial survey invitation. Spanish-speaking nonresponders also received a phone call reminder. Participants received a $20 incentive in the form of either a check or an Amazon e-gift card. A total of 614 patients and caregivers completed the evaluation survey, which represented a 34.5% overall response rate. Spanish-speaking participants had a response rate of 31.4%, were generally younger (P <.001), and were more likely to call the IRC on the phone (P <.001) compared to English-speaking participants.
Results: Participants most often reported contacting the IRC because they were looking for information about how LLS could help them postdiagnosis (58.6%), with financial assistance (43.3%), and to understand the blood cancer diagnosis and treatment options (41.9%). After talking with an information specialist, respondents felt more confident managing their or their loved one’s care (86.6%), more hopeful (89.2%), and less anxious (82.9%); in addition, respondents felt more knowledgeable about the blood cancer diagnosis (52.0%), financial assistance available to them (83.1%), and nutrition services (88.6%). Respondents believed the information specialists were very clear and helpful (93.9% and 93.4%, respectively), and that specialists’ ability to answer questions was excellent or good (93.4%). In general, Spanish-speaking participants reported very positive experiences with the IRC information specialists, similar to English-speaking participants. A slightly higher percentage of Spanish-speaking participants said that the materials provided by LLS were only a little helpful (P =.004).
Conclusion: Managing blood cancer is complex, with potentially significant financial and quality-of-life implications. The IRC provides an effective model for blood cancer patient and caregiver education, support, and assistance. This independent evaluation found that blood cancer patients and caregivers who utilize IRC services had overwhelmingly positive experiences and found the materials helpful. Respondents felt more hopeful and more confident, and they knew more about treatment options, clinical trials, and resources they could utilize. The IRC provides patients and caregivers with the resources needed to advocate for their care and supports their engagement in care delivery and decision-making.
Return to TopC3 Legal and Financial Navigation Program Provides Individualized Education to Empower Patients and Support Self-Advocacy
Nicole Jolicoeur, JD; Joanna Fawzy Morales, JD; Monica Fawzy Bryant, JD
Triage Cancer, Chicago, IL
Background: Triage Cancer’s (TC) Legal and Financial Navigation Program (LFN) assists individuals coping with cancer, their caregivers, and healthcare professionals to navigate the legal, financial, and practical issues that arise after a cancer diagnosis. Providers are rarely trained on the cancer-related legal issues impacting patients and are therefore ill-equipped to answer complex questions on these topics. Researchers at Duke 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 bills, and handle other daily life challenges. These are all contributing factors of financial toxicity. While patients may have access to clinical navigation services, it is unlikely they are getting in-depth guidance on employment, disability insurance, or health insurance. 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. The LFN educates individuals on the laws that may be relevant and on the practical next steps to navigate situations, providing a foundation for cancer patients to advocate for themselves.
Objective: To provide accurate information on the legal and financial issues that arise after a cancer diagnosis to individuals nationwide, empowering individuals to advocate for themselves, thereby increasing access to quality care and minimizing financial toxicity.
Methods: The LFN provides individualized navigation regarding cancer-related legal and financial issues, including health insurance, employment, and disability insurance. The LFN educates individuals diagnosed with cancer on laws and practical steps, empowering them to evaluate options and choose next steps. This education provides individuals with systemic solutions to mitigate financial toxicity and access-to-care issues. A next-day follow-up survey of all individuals who received one-on-one assistance via the LFN measured whether callers felt better prepared after speaking with TC. An additional 3-week follow-up measured if individuals’ questions were answered and if they feel that they have actionable next steps.
Results: In 2022, TC assisted 1289 individuals through the LFN, from 48 states and the District of Columbia. Eight hundred fifty-seven of these individuals were diagnosed with cancer. This program grew 39% from 2021. In a follow-up survey, 94% of survey responders reported that they felt better prepared regarding their options. Ninety-eight percent of respondents reported that their questions were answered, and 94% reported that they had actionable next steps after an LFN call.
Conclusion: Individuals diagnosed with cancer feel better prepared to face situations that arise after a cancer diagnosis after receiving individualized information through the LFN. When individuals are provided with accurate information and given an opportunity to discuss practical next steps, they are empowered to advocate for themselves to minimize financial toxicity and relieve stress and anxiety.
Funding and Disclosures: The Legal and Financial Navigation Program has received support from: Bristol Myers Squibb, Daiichi-Sankyo, Eisai, EMD Serono, Genentech, Novartis, and Novartis STEP Program. However, these companies do not have input into the delivery or content of the Legal and Financial Navigation Program.
Return to TopC4 The Sexual Health Needs of Young Women Affected by Breast Cancer
Stefanie Washburn, MSW, LSW1; Arin Ahlum Hanson, MPH1; Janine Guglielmino, MA1; Catherine Ormerod, MSS, MLSP1; Nicole Katze, MA1; Marissa Ericson, PhD2; Dede K. Teteh, DrPH, MPH, CHES3
1Living Beyond Breast Cancer; 2University of Southern California; 3Chapman University
Background: Nearly 9% of new breast cancer diagnoses in the United States are in women under the age of 45. Sexual health in breast cancer patients is important to quality of life. Nursing interventions, including in younger patients, can have a positive effect.
Objective: In 2020, Living Beyond Breast Cancer (LBBC) conducted a needs assessment to better understand the unique needs of young women with breast cancer and how best to help them navigate this complex and life-changing event. In this needs assessment, LBBC focused specifically on demographic differences and targeted content areas such as sexual health.
Methods: An 88-item online questionnaire was administered via REDCap between August and September 2020. Inclusion criteria were women diagnosed with breast cancer at or before age 45, who were living in the United States. The survey included questions about respondents’ experiences with sexual, physical, and emotional health throughout their treatment journey. Twelve of the 88 questions focused on sexual health. Special focus was placed on participants’ demographic and health information, including race/ethnicity, cancer stage, and time since diagnosis. LBBC received institutional review board (IRB) approval after data collection. The needs assessment was part of LBBC’s Young Women’s Initiative, a program funded through a cooperative agreement with the US Centers for Disease Control and Prevention.
Results: Breast cancer diagnosis and treatment caused considerable physical and emotional impacts on women diagnosed before age 45 (N=717). Many participants reported significant impacts to their sexual health (64%), yet over half (62%) reported their healthcare providers did not raise this issue. Of those who spoke to a provider, 68% reported the provider initiated the conversation. Race/ethnicity, cancer stage, and time since diagnosis resulted in differences in young women’s experiences. The most common problem was lack of interest in sex (56%). This was reported most often by those with more advanced stages of cancer. Hispanic women (48%) reported pain during sex more frequently than other groups (0%-35%). A higher percentage of Black women (52%) were satisfied with their sexual health than other groups (17%-33%). The percentage of participants diagnosed in the past year who reported their diagnosis had “extremely” affected their sexual health was lower (27%) relative to other groups.
Conclusion: Addressing sexual health concerns of young women with breast cancer is a critical care gap. Survey participants reported differences in sexual health needs across several key determinants. LBBC is dedicated to improving resources and educating healthcare providers. Since 2020, LBBC has developed a sexual health video series, offered a webinar for providers on breast cancer and sexual health, and expanded the Survivorship Series, which trains nurse navigators to cover topics including sexual health in programming for young women. In 2023, LBBC will pilot a sexual health toolkit to help providers better address patient concerns.
Sources
Division of Cancer Prevention and Control, Centers for Disease Control and Prevention. Breast cancer in young women. Last reviewed April 13, 2023. Accessed May 31, 2023. https://www.cdc.gov/cancer/breast/young_women/bringyourbrave/breast_cancer_young_women/
Lu J, Chen XM, Xie KH. Effectiveness of nursing interventions on the sexual quality of life of patients with breast cancer: a systematic review and meta-analysis. PLoS ONE. 2022;17(11):e0277221. Accessed May 31, 2023. https://doi.org/10.1371/journal.pone.0277221
Nardin S, Mora E, Varughese FM, et al. Breast cancer survivorship, quality of life, and late toxicities. Front Oncol. 2020;10:864. Accessed May 31, 2023. https://doi.org/10.3389/fonc.2020.00864
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