Evidence map›Paper›PMID 30249575›Full record

ArticleJournal of medical Internet research2018

Experience With the Use of an Online Community on Facebook for Brazilian Patients With Gestational Trophoblastic Disease: Netnography Study.

Marisa Victoria Diniz, Sue Y Sun, Claudia Barsottini, Mauricio Viggiano, Roney C Signorini Filho, Bruna Sanches Ozane Pimenta, Kevin M Elias, Neil S Horowitz, Antonio Braga, Ross S Berkowitz

Open access · goldAbstract read
In one paragraph

Article in Journal of medical Internet research, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed, 1 pooled it
2.6field-weighted citation impact, top 9% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed, 1 synthesis or guideline pooled it, 28 citations in OpenAlex.

  1. Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2021
    Pooled it
  2. Article
  3. Article
  4. Use of Netnography to Understand GoFundMeHealthcare (Basel, Switzerland) · 2022
    Article
  5. Article
  6. Article
  7. Article
  8. Gestational Trophoblastic Disease in Brazil.Revista brasileira de ginecologia e obstetricia : revista da Federacao Brasileira das Sociedades de Ginecologia e Obstetricia · 2019
    Article
  9. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors at 3 institutions in 2 countries.

Marisa Victoria DinizObstetrics, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.ORCID 0000-0003-1001-5954
Sue Y SunObstetrics, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.ORCID 0000-0001-6573-7386
Claudia BarsottiniHealth Informatics, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.ORCID 0000-0002-7861-3216
Mauricio ViggianoGoiania Trophoblastic Disease Center, Goiania, Brazil.ORCID 0000-0002-7088-816X
Roney C Signorini FilhoObstetrics, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.ORCID 0000-0001-9842-0369
Bruna Sanches Ozane PimentaObstetrics, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.ORCID 0000-0002-5726-6243
Kevin M EliasDivision of Gynecologic Oncology, Obstetrics and Gynecology, Harvard Medical School, Boston, MA, United States.ORCID 0000-0003-1502-5553
Neil S HorowitzDivision of Gynecologic Oncology, Obstetrics and Gynecology, Harvard Medical School, Boston, MA, United States.ORCID 0000-0002-4854-0642
Antonio BragaRio de Janeiro Federal University, Rio de Janeiro, Brazil.ORCID 0000-0002-2942-6182
Ross S BerkowitzDivision of Gynecologic Oncology, Obstetrics and Gynecology, Harvard Medical School, Boston, MA, United States.ORCID 0000-0002-7569-898X
Universidade Federal de São Paulo · BRBrigham and Women's Hospital · USUniversidade Federal do Rio de Janeiro · BR

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe term gestational trophoblastic disease (GTD) includes both complete and partial moles, which are uncommon nonviable pregnancies with the potential to evolve into a malignancy known as gestational trophoblastic neoplasia. While highly curable, the potential for malignancy associated with molar pregnancies worries the patients, leading them to seek information on the internet. A Facebook page headed by Brazilian specialized physicians in GTD was created in 2013 to provide online support for GTD patients.

objectiveThe objective of our study was to describe the netnography of Brazilian patients with GTD on Facebook (FBGTD) and to evaluate whether their experiences differed depending on whether they received care in a Brazilian gestational trophoblastic disease reference center (BRC) or elsewhere.

methodsThis was a cross-sectional study using G Suite Google Platform. The members of FBGTD were invited to participate in a survey from March 6 to October 5, 2017, and a netnographic analysis of interactions among the members was performed.

resultsThe survey was answered by 356 Brazilian GTD patients: 176 reference center patients (RCP) treated at a BRC and 180 nonreference center patients (NRCP) treated elsewhere. On comparing the groups, we found that RCP felt safer and more confident at the time of diagnosis of GTD (P=.001). RCP were more likely to utilize FBGTD subsequent to a referral by health assistants (P<.001), whereas NRCP more commonly discovered FBGTD through Web searches (P<.001). NRCP had higher educational levels (P=.009) and were more commonly on FBGTD for ≥ 6 months (P=.03). NRCP were more likely to report that doctors did not adequately explain GTD at diagnosis (P=.007), had more doubts about GTD treatment (P=.01), and were less likely to use hormonal contraception (P<.001). Overall, 89% (317/356) patients accessed the internet preferentially from home and using mobile phones, and 98% (349/354) patients declared that they felt safe reading the recommendations posted by FBGTD physicians.

conclusionsThis netnographic analysis of GTD patients on FBGTD shows that an Web-based doctor-patient relationship can supplement the care for women with GTD. This resource is particularly valuable for women being cared for outside of established reference centers.

Indexed as

Patient Acceptance of Health CarePrenatal DiagnosisSocial MediaTelemedicineAdultBrazilCross-Sectional StudiesFemaleGestational Trophoblastic DiseaseHumansPregnancyUterine NeoplasmsYoung AdultFacebookgestational trophoblastic diseasemobile phonesocial media

Identifiers

PMID30249575
PMCPMC6231805
OpenAlexW2811152947

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.