JMIR Publications

ABSTRACT

Background:

Published evidence on patient experiences and perspectives on early breast cancer (eBC) in Italy is limited.

Objective:

This social media listening study was conducted to understand the patient journey, treatment perceptions, quality of life (QoL), and unmet needs of patients, caregivers, and health care professionals (HCPs).

Methods:

Social media posts between December 2021 and November 2023 were extracted using breast cancer–related keywords via Sprinklr, an online social media listening tool. English and Italian language posts from Italy were extracted. eBC-relevant conversations were identified, screened, mapped, and analyzed to understand various themes.

Results:

Of the 1580 posts screened, 530 were relevant to patients with eBC. Patients contributed to 60% (318/530) of the posts, with 95% (493/518) willing to share information, whereas only 27% (141/518) sought information. Patients shared information about their symptoms, diagnostic and treatment journey, and QoL and sought information about diagnosis dilemmas, treatment options, and second opinions from HCPs. Caregivers contributed to 21% (111/530) of the posts, with 53% (57/107) being children discussing their mothers’ diagnosis and treatment challenges. HCPs contributed to 16% (85/530) of the posts, sharing updates on eBC, including about clinical trials and drug approvals. Unidentified individuals contributed to 3% (16/530) of the posts. Patients complained about multiple tests, repeated visits for the same tests, and ineffective communication with HCPs. Lack of understanding, misinterpretation, and lack of timely communication of test results were some of the key barriers for patient-HCP communication. Patients felt relieved after surgery but had concerns about the long duration and side effects of chemotherapy and endocrine therapy, leading them to seek information for more effective treatment strategies. eBC substantially impacted patients’ QoL, affecting their emotional well-being (91%, 80/88), physical functioning (36%, 32/88), functional well-being (11%, 10/88) and social well-being (8%, 7/88). Patients’ key unmet needs were limited treatment knowledge, lack of trusted online peer groups for support, diagnosis and treatment related communication issues with HCPs, and lack of awareness about and limited access to specialty breast care units in their cities.

Conclusions:

There is a huge scope for improving the patient journey especially through better treatment strategies, enhanced patient-HCP communications, and better patient coping mechanisms.