Exploring the Experiences and Perspectives of Patients With Early Breast Cancer, Caregivers, and Health Care Professionals: Italian Social Media Listening Study.

BACKGROUND: Published evidence on patient experiences, perceptions, and challenges related to early breast cancer (eBC) in Italy is limited. Understanding these aspects is critical for improving diagnosis, treatment outcomes, and quality of life (QoL).

OBJECTIVE: This study used social media listening (SML) to explore the patient journey, treatment perceptions, QoL, and unmet needs of patients with eBC, caregivers, and health care professionals (HCPs) in Italy.

METHODS: This retrospective noninterventional SML study analyzed publicly available posts from December 2021 to November 2023 using breast cancer-related keywords in English and Italian through Sprinklr, a web-based aggregator tool. Posts sourced from social media platforms, such as X (formerly known as Twitter), blogs, forums, Facebook, Instagram, and YouTube, were filtered by geographic location to include only users in Italy. Posts were filtered using natural language processing (NLP) for relevance and duplicates, followed by manual review and stakeholder identification (patients, caregivers, and HCPs). Key themes of discussion were identified through thematic analysis of posts across the stages of the patient journey (symptoms, diagnosis, treatment, etc). Ethical guidelines were followed by using anonymized, publicly available data. Descriptive statistics were used to analyze the data, and posts with missing data were excluded. Consequently, denominators varied across analyses and were adjusted based on data availability for specific variables.

RESULTS: Of the 20,008 posts initially extracted, 1580 posts were retained following NLP filtering, and 530 posts were included after manual screening. The majority (493/518, 95%) of the posts were sharing information about diagnosis and treatment journeys, emotional challenges, QoL concerns, and symptoms (eg, lumps, breast pain), while 27% (141/518) of the posts sought information on diagnostic dilemmas, treatment options, and second opinions. Patients contributed 60% (318/530) of the posts, and caregivers contributed 21% (111/530) of the posts, with over half (57/107, 53%) discussing their mothers' diagnosis and treatment struggles. HCPs contributed 16% (85/530) of the posts, primarily sharing clinical trial updates, drug approvals, and disease awareness efforts. A total of 88 posts included discussions on QoL, and eBC significantly impacted patients' emotional, physical, functional, and social well-being. Discussions revealed key unmet needs, including limited awareness of adjuvant therapy options, lack of peer support groups, suboptimal patient-HCP communication, and insufficient access to specialty care facilities.

CONCLUSIONS: This study highlights gaps in eBC management related to patient education, HCP communication, and access to specialty care and describes an associated worsening of QoL for patients as reflected in social media posts. Within the limitations of an observational SML design, increasing patient and caregiver awareness of available adjuvant therapies to improve adherence and reduce recurrence risk, alongside expanding access to regional breast cancer centers, may help optimize patient experiences and outcomes. Further research using complementary data sources is needed to confirm and extend these findings.