The Needs of Women Treated for Ovarian Cancer: Results From a #gyncsm Twitter Chat

Authors

Teresa Hagan Thomas, University of Pittsburgh School of NursingFollow
Karin Nauth-Shelley, ThoughtBoostFollow
Michael A. Thompson, Aurora Research Institute, Aurora Health CareFollow
Deanna J. Attai, University of California, Los AngelesFollow
Matthew S. Katz, Lowell General HospitalFollow
David Graham, Levine Cancer Institute-Mallard CreekFollow
Dee Sparacio, #gyncsm online communityFollow
Christina Lizaso, #gyncsm online communityFollow
Audun Utengen, SymplurFollow
Don S. Dizon, Lifespan Cancer Institute, Rhode Island HospitalFollow

Publication Date

4-26-2018

Keywords

ovarian neoplasm, survivorship care plan, cancer survivorship, patient needs, Twitter

Abstract

Purpose: Ovarian cancer is the most fatal of all gynecologic cancers, with a high relapse rate regardless of stage. Women treated for ovarian cancer, therefore, likely have supportive care needs that extend well beyond the time frame of first-line therapy. Unfortunately, there is minimal data describing these needs. The purpose of this qualitative study is to understand the supportive care needs of women with ovarian care at the end of treatment.

Methods: To better understand the issues faced by women with ovarian cancer, we conducted a public Twitter chat in collaboration with gynecologic cancer social media (#gyncsm). Both quantitative and qualitative analyses were performed.

Results: The chat occurred over a 1-hour time frame on Twitter and resulted in more than 300 unique and original tweets from 43 participants during the chat and an additional 60 unique participants following the chat. Survivors and physicians represented 32% and 11% of participants, respectively; caregivers, advocates, and other clinicians represented the remaining participants. Participants noted deep interest in receiving support during survivorship and dissatisfaction with currently available resources. Sentiment analysis showed that participants viewed the support from social media in a positive light and also revealed negative sentiment around the lack of support from health care providers at the end of treatment.

Conclusions: Themes derived from the Twitter chat revealed the unique experiences of individuals with ovarian cancer after treatment, including a heightened sense of vulnerability. Understanding these themes represents an opportunity for clinicians to better understand and address the needs of this patient community.

Recommended Citation

Hagan Thomas T, Nauth-Shelley K, Thompson MA, Attai DJ, Katz MS, Graham D, Sparacio D, Lizaso C, Utengen A, Dizon DS. The needs of women treated for ovarian cancer: results from a #gyncsm Twitter chat. J Patient Cent Res Rev. 2018;5:149-57. doi: 10.17294/2330-0698.1592