JMIR Publications

ABSTRACT

Background:

Internet and social media platforms offer insight into the experience of patients and cancer survivors, but the volume of narrative data is often cumbersome for thorough analysis. Gynecologic cancer survivors in particular have unique survivorship concerns.

Objective:

We present a unique methodology to leverage large amounts of data from internet-based platforms for mixed methods analysis. To demonstrate our approach, we analyzed discussion board posts from gynecologic cancer survivors discussing their psychosocial experience of disease on the American Cancer Society (ACS) website.

Methods:

All posts from three gynecological cancer discussion boards on the ACS Cancer Survivors Network were analyzed. Posts were downloaded, or “web-scraped,” using custom Python scripts and subsequently organized by psychosocial themes described in the Cancer Survivorship Care Framework. Organization by psychosocial themes was facilitated via keywords that were generated and verified. Quantitative analysis was completed using custom Python scripts and R packages. Qualitative analysis was expedited by our methodology and was completed on a subset of posts.

Results:

A total of 125,498 posts made by 6,436 gynecological cancer survivors and caregivers between July 2000 and February 2020 were evaluated. Of the 125,489 posts, 23,458 were related to the psychosocial experience of cancer and were included for a mixed methods psychosocial analysis. Quantitative analysis revealed that survivors across all gynecological discussion boards frequently discussed the role of friends and family in care, fatigue, the effect of cancer on interpersonal relationships, and health insurance status. Words related to psychosocial aspects of survivorship that were used most often in posts included, “family,” “hope,” and “help.” Qualitative analysis similarly demonstrated that survivors frequently discussed coping, family, and caregiver relationships, where survivors described and sought advice on areas such as spousal emotional support and adjustment, financial toxicity, and confronting mortality.

Conclusions:

Online discussion-based platforms offer great opportunity to learn about patient experiences of survivorship. Our novel methodology expedites the quantitative and qualitative analysis of such robust data.