LBA Category III: Patient Advocacy/Patient Empowerment

November 2023 Vol 14, No 11 —November 22, 2023
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D1 Cancer Advocacy and Patient Education Lung Pilot Study Evaluation: Findings From 4 Diverse Clinical Settings for Future Implementation

Linda Fleisher, PhD, MPH1; Cassidy Kenny, MBA1; Emily Gentry, BSN, RN, HON-ONN-CG, OCN2

1Fox Chase Cancer Center, Philadelphia, PA; 2Academy of Oncology Nurse & Patient Navigators (AONN+), Cranbury, NJ

Background: The Cancer Advocacy and Patient Education (CAPE) Lung initiative is a web-based patient education platform created by the Academy of Oncology Nurse & Patient Navigators (AONN+) and designed to improve patient education and enhance patient care. CAPE permits navigators and care teams to send patients “e-prescriptions” containing personalized education customized for each patient’s treatment.1

Objective: Fox Chase Cancer Center (FCCC), in collaboration with AONN+, conducted a pilot study to evaluate patient efficacy, provider feedback, and implementation of CAPE Lung using an implementation science framework in diverse cancer settings.

Methods: Patients were recruited to the evaluation at each site and completed a baseline survey, received personalized e-prescriptions, and completed a 1-month follow-up survey over the phone with the FCCC research team about their experience with CAPE. Implementation strategies were site specific and tailored to meet the needs of each site’s clinical workflows. The perceived usefulness and educational value of the CAPE platform across the diverse sites were measured through meeting notes, debrief interviews with site staff, and a focus group with navigators beyond the pilot sites. Participating sites were identified by FCCC and the AONN+ team based on defined eligibility criteria to ensure representation of various clinical settings, appropriate caseloads for study accrual, workflows, and navigation models to elicit insights from diverse provider and patient populations.

Results: Fifty-three English-speaking patients with non–small cell lung cancer were enrolled in the CAPE program within 12 weeks of their diagnosis. The majority of the patients who used the CAPE resources viewed it positively. However, some patients felt overwhelmed by their diagnosis or other external factors. In reviewing the implementation data, several factors were identified that influenced the potential effectiveness of CAPE, such as overwhelmed patients, short-staffing, low technology literacy, and provider handoffs throughout the trajectory of care.

Conclusions: Patients and providers felt that CAPE is a supportive resource, that it fits within patient workflow practices, and matched patient educational needs. AONN+ believes there are strategic points in the patient care process at which CAPE could be introduced into the treatment trajectory. A one-size-fits-all approach to implementation timing may not be optimal, and the insights from these preliminary findings will guide future implementation and dissemination of CAPE as its use is expanded to different disease sites.2,3

References

  1. Bellomo C, Pixley AJ. The CAPE Initiative: developing meaningful educational materials to elevate quality of life for patients with lung cancer. J Oncol Navigation Survivorship. 2019;10(7):260-262.
  2. Buis L. Implementation: the next giant hurdle to clinical transformation with digital health. J Med Internet Res. 2019;21(11):e16259.
  3. Mathews SC, McShea MJ, Hanley CL, et al. Digital health: a path to validation. NPJ Digit Med. 2019;13(2):38.
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D2 Co-creating Digital Solutions With Navigators, Patients, and Survivors to Address Breast Cancer Disparities in Memphis, Tennessee

Carla Baker, RN; Kashena Jenkins, MSW; Stacey Tinianov, MPH

Background: The Memphis Metropolitan Statistical Area (MSA) leads in disparities in mortality rates between Black and White breast cancer patients. While patient navigation can help to bridge the gap in access to resources, there is a scarcity of navigators’ time and energy to support the increasing breast cancer population.

Objective: By fostering patient navigator collaboration and leveraging a community-driven, co-creation approach, the Addressing Breast Cancer Disparities (ABCD) initiative sought to measurably increase access to resources utilizing digital enablement. Beyond its local impact, it presents a replicable model for other regions. Moreover, it showcases how nurse and patient navigators can spearhead community-based, digital co-creation initiatives.

Methods: Collaborating with Urban Health Education and Support Services, Tennessee Department of Health, Rabble Health, and West Cancer Center Research Institute, the initiative implemented a 4-phase approach to: (1) partner with local breast cancer advocacy groups to establish a core co-creation team, (2) facilitate cross-functional workshops with patients and navigators to uncover resource access gaps and needs, (3) engage patients and navigators to co-create an engagement app, and (4) deploy community-relevant resources through the app using co-created strategies from patients and navigators.

Results: More than 50 community members and institutions participated in the co-creation and deployment of a digital enablement tool designed to improve access to resources for those in the Memphis MSA. Members of the ABCD core team created strategies unique to the areas in which they serve, enabling meaningful connection, community trust, rapid dissemination, and robust deployment. Beyond the need for accessible resource links, the co-creation team highlighted a need for an online community. Both patient and navigator participants thought the co-creation process was easy and accessible and that the engagement app would result in significant time savings for navigation professionals and an improved experience for patients. Ongoing efforts focus on community-wide impact from screening through survivorship.

Conclusions: A patient-navigator co-creation paradigm offers a blueprint for improving the patient experience and enhancing equitable cancer care. While a variety of digital enablement tools exist for support, few are co-created with the patients and even fewer created with navigators. The model’s scalability empowers other geographies and community groups to adopt similar strategies. Additionally, the initiative serves as a pioneering example of patient navigators leading digital co-creation in communities, propelling patient-centered care to new heights.

Source

Vidal G, Bursac Z, Miranda-Carboni G, et al. Racial disparities in survival outcomes by breast tumor subtype among African American women in Memphis, Tennessee. Cancer Med. 2017;6:1776-1786.

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D3 How Do Breast/Ovarian Cancer Survivors Perceive the Quality of the Patient Navigation Services They Receive?

Adina Fleischmann,1 Melissa Rosen,1 Marcelo Sleiman Jr,2 Mary Rose Yockel,2 Mingqian Liu,2 Olivia Young,2 Sahana Arumani,2 Kenneth P. Tercyak2

1Sharsheret, Teaneck, NJ; 2Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC

Background: Women previving/surviving with breast/ovarian cancer utilize patient navigation (PN) to augment their medical care, often through community- based organizations (CBOs). Women’s perceptions of PN quality are largely unknown. This is especially important to understand among those experiencing greater social determinants of health (SDoH) and quality of life (QoL) burdens.

Objective: To evaluate the perceived quality of PN services (eg, meaningful, informative, timely, supportive) received by patients previving/surviving with breast/ovarian cancer, and to examine its correlates, including SDoH and QoL.

Methods: This is a secondary data analysis conducted among women (N=2247) who contacted a national CBO for no-cost PN between 2020 and 2022. Women completed an annual follow-up evaluation using an online survey assessing their perceptions of PN quality and other outcomes, including SDoH and QoL. Data were prepared and analyzed for univariate descriptives and bivariate associations between demographic and clinical variables with PN, as well as the associations between SDoH, QoL, and PN. In a final step, a multivariable regression analysis was conducted to examine breast/ovarian cancer survivors’ perceived quality of PN, adjusted for cofactors.

Results: Perceived PN quality by the CBO was very high at 91%. Over 65% “strongly agreed” the PN received was meaningful, informative, timely, and supportive. PN also helped women feel more empowered. Specifically, they reported being more informed about (67%) and confident in (71%) managing their healthcare. Disparities in PN perceptions were observed among those who were non-White (t=-1.78, per quality navigation).

Conclusion: Quality of the CBO PN service model was strong, as nearly all of the >2200 respondents reported the maximum possible quality score. The majority of women receiving navigation also reported being empowered by the CBO to know about and feel confident in managing their healthcare. Disparities between those with higher versus lower SDoH and QoL burdens suggest additional outreach may be necessary to address vulnerable population needs. Outreach could improve the timeliness, informativeness, and supportive nature most meaningful to those patients with greater physical and/or emotional burdens when they need navigation the most.

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D4 Utility of the MammaPrint 70-Gene and BluePrint 80-Gene Expression Signatures in Providing Personalized Treatment Decision in Early-Stage Breast Cancer, and the Role of the Oncology Nurse Navigator: A Case-Study Approach

Jo Weathers, RN, BSN, OCN, ONN-CG; Jane Baker, RN, MSN; Victoria Poillucci, DNP, MEd, ACNP-BC; Christina Z. Page, AOCNP, AGPCNP-BC

Background: Nurse navigators (NNs) are key players on the oncology care team who educate their patients and advocate for them, while facilitating comprehensive care. MammaPrint is a 70-gene test that assesses the risk of distant metastasis in early-stage breast cancer. BluePrint is an 80-gene test that identifies the functional molecular pathways that drive tumor growth in an individual breast cancer. Together, the results of these tests provide valuable information that guides treatment decisions.

Objective: Through a case-study approach, we aim to demonstrate how oncology NNs can utilize the gene expression signatures of breast cancers, obtained by MammaPrint and BluePrint assays, to guide their patients through treatment-related decision-making at multiple points throughout their cancer journey.

Methods: An oncology NN from a community-based clinic in the Southeast identified a case study in which the results of the MammaPrint and BluePrint genomic assays were important in determining the treatment plan. The NN advocated for and facilitated the order of the MammaPrint and BluePrint tests from the core needle biopsy. The results of these tests allowed a breadth of information about this patient’s tumor to be available at the time of the initial medical oncology visit. Clinical risk was determined by evaluating the tumor size, grade, and the status of estrogen receptor (ER) and progesterone receptor (PR), human epidermal growth factor receptor-2 (HER2), and lymph node spread. MammaPrint, the 70-gene signature, categorizes tumor risk of recurrence as UltraLow (+0.356 to +1.000), Low (+0.355 to >0.000), High1 (0.000 to -0.569) and High2 (-0.570 to -1.000). BluePrint, the 80-gene signature, further classifies tumors as Luminal, HER2 type, or Basal. These classifications most accurately predict sensitivity to chemotherapy and endocrine therapy, pathologic complete response rates, and long-term outcomes.

Results: A 36-year-old premenopausal woman with a clinically high-risk tumor had a core biopsy of the right breast revealing grade 2 invasive ductal carcinoma. Biomarkers showed ER 67%, PR 45%, and HER2 negative (0). A MammaPrint Index of +0.311 classified the tumor as Low Risk, and BluePrint further classified the tumor as Luminal A. A right axillary lymph node biopsy was positive. The patient was recommended neoadjuvant endocrine therapy consisting of ovarian function suppression with leuprolide and daily antiestrogen with tamoxifen. After 3 months of therapy, repeat breast imaging showed a partial response to therapy. MammaPrint/BluePrint Low-risk Luminal results indicate endocrine sensitivity. Endocrine therapy is ongoing. Surgery is planned after 6 months of therapy. Ten years of adjuvant endocrine therapy is recommended. Chemotherapy is not recommended.

Data to inform the care of young women with breast cancer are lacking. Genomic information supplemented clinicopathologic information and facilitated shared decision-making involving the NN in this challenging case.

Conclusions: When considering clinicopathologic features alone, patients with clinically high-risk tumors are often recommended chemotherapy. The initial recommendation for neoadjuvant chemotherapy was adjusted after review of MammaPrint and BluePrint results, suggesting that this patient could safely forego chemotherapy and receive endocrine therapy alone. As key figures in a patient’s cancer journey, NNs are poised to advocate for the use of decision-making tools that can further personalize care. The MammaPrint and BluePrint genomic assays increase the confidence in treatment decisions for patients and providers. Continuous education of NNs on genomic assays remains important to facilitate shared decision-making and improve timely care.

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Last modified: November 29, 2023

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