JMIR Publications

ABSTRACT

Background:

Young women with metastatic breast cancer (YWMBC) are part of a digitally connected generation yet are underserved in terms of information needs. YouTube (YT) is the most commonly used search engine following Google. The accessibility of health-related content on social media, paired with the rare and marginalized experience of YWMBC, as well as the digital media practices of younger generations, implies a considerable likelihood that YWMBC will seek information and community online.

Objective:

This study aims to assess the quality of MBC YT videos and to identify themes in YWMBC experiences.

Methods:

A systematic review of MBC YT videos was conducted in 08/2021. Understandability, actionability were assessed using the Patient Education Materials Assessment Tool (PEMAT); information reliability/quality was assessed with DISCERN. Themes, sponsorships, healthcare professionals’ and patients’ narratives were reported.

Results:

A total of 101 videos were identified. Of these, 78.2% included sponsorships. Mean PEMAT score was 78.8% (SD 15.3) and 43.1% (SD 45.2) for understandability and actionability, respectively. Mean DISCERN score was 2.44/5 (SD 0.7). Identified themes include treatment (66.3%), family relationship (45.5%), motherhood (37.6%).

Conclusions:

YT videos about YWMBC are highly understandable but demonstrate moderate rates of actionability, with low reliability and quality scores. Many have a commercial bias. While online materials have limitations, their potential to provide patient support is not fully developed. By acknowledging their patients’ media habits, physicians can 1) further develop a trusting bond with their patients, 2) provide a space for open and honest discussions of online materials, and 3) avoid any potential instances of confusion caused by misleading, inaccurate, or false online materials.