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

Gynecol Oncol. 2014 Jan;132(1):149-53. doi: 10.1016/j.ygyno.2013.10.015. Epub 2013 Oct 19.


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.

Keywords: Cervix; Facebook; Large cell; Neuroendocrine; Small cell; Social media.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Anxiety / etiology
  • Carcinoma, Neuroendocrine / pathology
  • Carcinoma, Neuroendocrine / psychology*
  • Cross-Sectional Studies
  • Feasibility Studies
  • Female
  • Humans
  • Middle Aged
  • Neoplasm Staging
  • Quality of Life*
  • Sexual Behavior
  • Social Media*
  • Uterine Cervical Neoplasms / pathology
  • Uterine Cervical Neoplasms / psychology*