Use of social media to conduct a cross-sectional epidemiologic and quality of life survey of patients with neuroendocrine carcinoma of the cervix: A feasibility study

Tarrik Zaid, Jennifer Burzawa, Karen Basen-Engquist, Diane C. Bodurka, Lois M. Ramondetta, Jubilee Brown, Michael Frumovitz

Research output: Contribution to journalArticle

25 Scopus citations

Abstract

Objective To determine the feasibility of using social media to perform cross-sectional epidemiologic and quality-of-life research on patients with rare gynecologic tumors, we performed a survey of patients with neuroendocrine tumors of the cervix using Facebook. Methods After approval from our Institutional Review Board, a support group of patients with neuroendocrine tumors of the cervix was identified on Facebook. Group members were asked to complete a survey comprising 84 questions evaluating clinical presentation; treatment; recurrence; quality of life; and sexual function. Results The survey was posted for 30 days, during which 57 women responded from 8 countries across 4 continents treated at 51 centers. All respondents provided a detailed clinical and tumor history. The mean age was 38.5 years. The stage distribution was stage I, 36 patients (63%); II, 13 (23%); III, 2 (4%); and IV, 6 (11%). Forty-nine patients (86%) had small cell and 8 (14%) had large cell tumors. Forty-five of the respondents (79%) had completed primary therapy and were without evidence of disease. Five (9%) had recurrence, 3 (5%) had persistent disease after therapy, and 4 (7%) were still under treatment. Forty-one patients (72%) reported symptoms at time of presentation. Thirty-seven patients (65%) received multimodality primary therapy. Quality of life instruments demonstrated high scores for anxiety and a negative impact of anxiety and cancer on functional and emotional well-being. Sexual function scores did not differ significantly between respondents and the PROMIS reference population. Conclusions Use of a social media network to perform epidemiologic and quality of life research on patients with rare gynecologic tumors is feasible and permits such research to be conducted efficiently and rapidly.

Original languageEnglish (US)
Pages (from-to)149-153
Number of pages5
JournalGynecologic oncology
Volume132
Issue number1
DOIs
StatePublished - Jan 2014

Keywords

  • Cervix
  • Facebook
  • Large cell
  • Neuroendocrine
  • Small cell
  • Social media

ASJC Scopus subject areas

  • Obstetrics and Gynecology
  • Oncology

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