title: 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.
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.
authors.affiliation: Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
authors.forename: Tarrik
authors.initials: T
authors.lastname: Zaid
authors.affiliation: Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Burzawa
authors.affiliation: Department of Behavioral Science, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
authors.forename: Karen
authors.initials: K
authors.lastname: Basen-Engquist
authors.affiliation: Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
authors.forename: Diane C
authors.initials: DC
authors.lastname: Bodurka
authors.affiliation: Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
authors.forename: Lois M
authors.initials: LM
authors.lastname: Ramondetta
authors.affiliation: Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA.
authors.forename: Jubilee
authors.initials: J
authors.lastname: Brown
authors.affiliation: Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX, USA. Electronic address: mfrumovitz@mdanderson.org.
authors.forename: Michael
authors.initials: M
authors.lastname: Frumovitz
mesh_terms: D000328:Adult; D000368:Aged; D001007:Anxiety / Q000209:etiology; D018278:Carcinoma, Neuroendocrine / Q000473:pathology / Q000523:psychology*; D003430:Cross-Sectional Studies; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008875:Middle Aged; D009367:Neoplasm Staging; D011788:Quality of Life; D012725:Sexual Behavior; D061108:Social Media; D002583:Uterine Cervical Neoplasms / Q000473:pathology / Q000523:psychology*
keywords: Cervix; Facebook; Large cell; Neuroendocrine; Small cell; Social media