The COVID-19 pandemic substantially impacted the delivery of oncology care, particularly for individuals with metastatic cancers. The objective of this study was to qualitatively evaluate the impacts of COVID-19 on metastatic breast cancer (MBC) care among patients. This study consisted of 36 semi-structured qualitative interviews conducted virtually with people living with MBC, who were members of a patient support organization called Project Life. Project Life is an MBC patient-led, web-based wellness community. Responses were analyzed using Phronetic Iterative Analysis. Interviews were conducted from March 14, 2022, to May 31, 2022. Analysis from 36 individual in-depth qualitative interviews revealed the following themes during COVID-19: (1) variable preferences for telehealth (2) disruptions to care, (3) virtualization of social care. Wide variations existed in preferences surrounding telehealth, centered around ideas of convenience. Disruptions to care included delays to diagnostic care, isolation from caregivers, and interruptions associated with COVID-19 infection. These results call for adaptability in oncology care given wide-ranging preferences on telehealth and the shifting of available support services.
Background: Project Life is a virtual wellness house led by people living with metastatic breast cancer (MBC) for people with MBC. Through the organization’s targeted programming and curated content, Project Life promotes key dimensions of wellness: physical, emotional, social, spiritual, and financial. Project Life was created to fill the gaps in survivorship care for people with MBC specifically. The objective of this study was to qualitatively evaluate members’ experiences with Project Life, understanding the impact of the organization and potential areas for future growth. Methods: From March 2022 to May 2022, we conducted semi-structured qualitative interviews virtually with members of the Project Life wellness community. The study design and primary objectives were designed in direct collaboration with Project Life leadership. A study flyer was distributed by e-mail and social media to the Project Life community. Participants were eligible if they self-identified as having MBC, were a member of the Project Life community and could complete the interview in English. Participants were asked a series of questions about how they heard about the organization, the types of programming they have participated in, the greatest benefits of Project Life, and areas for future growth and improvement. Interview transcripts were transcribed verbatim and analyzed. We then analyzed transcripts with phronetic iterative analysis, to uncover contextually grounded, emergent themes through synthetic coding. Results: We interviewed 36 women with MBC who were members of the Project Life Wellness Community in Spring 2022. Overall, 22% of participants identified as people of color, including Black, Latina and Asian women. In terms of age, 8 participants were 30-45, 15 were 46-59, and 13 were 60+. The overwhelming majority heard about Project Life through social media, with only one participant indicating they learned about the organization from their cancer center. Many participants stated that they wished cancer centers connected patients to external MBC support organizations like Project Life. The most commonly utilized Project Life programs included healing circles, legal clinics, cooking classes, and therapeutic art. Many participants endorsed having improvements in quality of life from being engaged with Project Life through MBC-specific curated content and the strong sense of community. Several participants indicated the appeal of participating in an organization that was developed by people with MBC for people with MBC. Additional suggestions for content included finding information about clinical trials and increasing caregiver programming. Suggested opportunities for growth included programming across time zones, facilitating geographic connections, and partnering with other MBC advocacy organizations. Conclusions: Patient-led and curated virtual communities are filling substantial gaps in survivorship care for individuals with metastatic breast cancer. Through its virtual format, the Project Life wellness community has a widespread reach and offers a promising model for intentionally curated metastatic survivorship care. The unique virtual format of Project Life should spark creativity in how quality survivorship care for people with MBC can be delivered. Healthcare settings including cancer centers can play a larger role in connecting people with MBC to external support organizations to better ensure survivorship needs are being holistically met. Citation Format: Mya Roberson, Joshua Woods, Lesley Glenn, Deltra James, Julia Maues. "It’s like Coming Home": A Qualitative Evaluation of Project Life a Virtual Wellness Community for People Living with Metastatic Breast Cancer [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P5-08-16.
259 Background: Treatment advances for metastatic breast cancer (MBC) have markedly increased survival over the last several decades. Despite the clinical innovation that has occurred, there remains substantial fragmentation of care and lack of focused attention on MBC survivorship care. This study partnered with Project Life, an MBC-survivor led patient wellness community to assess MBC patient experiences with treatment experiences and social support services. Methods: We conducted, virtual, in-depth semi-structured qualitative interviews among people who were members of the Project Life Wellness community. The interview guide and study materials were developed in collaboration with Project Life leadership. A study flyer was distributed by Project Life to members that included a link to an eligibility survey. Participants were eligible if they self-identified as having MBC, were a member of the Project Life community, and could complete the interview in English. As part of the interview, we asked, “How would you re-imagine medical care for people with metastatic breast cancer?” We then systematically processed responses with phronetic iterative analysis, using the mixed-methods research software MAXQDA, to uncover contextually grounded, emergent themes through synthetic coding. Results: We interviewed 36 women with MBC who were members of the Project Life Wellness Community in Spring 2022. In terms of age, 8 (22%) participants were 30-45, 15 (42%) were 46-59, and 13 (36%) were 60+. Overall, 22% of participants identified as people of color (Black, Latina, or Asian). In response to how they would reimagine MBC care delivery, all participants touched upon dimensions of care coordination. Aspects of care coordination that participants specifically raised included 1) Organized referral processes for non-oncology care like mental health services, sexual health care, and palliative care; 2) The need for MBC-specific support services within the care setting; 3)Patient connection to psychosocial aspects of care including social work and patient navigation; 4) Streamlined processes for identifying and enrolling in clinical trials. Conclusions: In our investigation, when asked how they would reimagine MBC care delivery, participants overwhelmingly endorsed the need for more care coordination along several key domains. Responses highlighted the unique needs of care coordination specific to MBC patients. Future care innovations should center patient voices to ensure optimal impact.
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