Banner Portal
The use of social networks in scientific research with questionnaires


Epidermolysis bullosa. Electronic mail. Quality of life. Social support. Surveys and questionnaires.

How to Cite

Grossmann S de MC, Moura MDG, Matias MDP, Paiva SM, Mesquita RA. The use of social networks in scientific research with questionnaires. Braz. J. Oral Sci. [Internet]. 2018 Jul. 10 [cited 2024 Jul. 23];17:e18162. Available from:


Aim: The aim of this study was to determine the response rate of the SF-36 quality of life questionnaire sent and received by mail and over a social network to caregivers of individuals with epidermolysis bullosa (EB) in Brazil. Methods: All volunteers were first-degree relatives of patients with EB that directly spent time helping them with their basic activities of daily living. A maximum of two caregivers per patient could answer the questionnaire. Volunteers were divided into two groups: for group 1, questionnaires were sent to 53 members of a support association for the disease by mail, and for group 2, 798 members of the Facebook™ page of friends and relatives of patients with EB were invited to participate using an access link to Google Drive™ to gain access to the questionnaire. The data from both groups were analyzed 150 days after the start the study. Descriptive analysis was performed by EpiInfo8 and the return of questionnaires was evaluated according to age, sex, and time of return using the Chi-squared and Fisher’s exact test. Results: After 150 days, 30 questionnaires were returned, 17 (56.7%) of which from group 1 and 13 (43.3%) from group 2. Approximately 12 questionnaires were returned by mail and 11 over the social network. Conclusions: The data collection of the SF-36 quality of life questionnaire from caregivers of individuals with EB over a social network seems to be efficient mainly when it is necessary to collect results within a short timeframe, highlighting the importance of social networks as a means for conducting this type of research. However, in our study, the most efficient method was distributing the questionnaires by mail.


Bufrem LS, Gabriel Junior RF, Sorribas TV. [Social networks in scientific research in the field of information science]. DataGramaZero. 2011 Aug;12(3):1-13. Portuguese.

Fontes KB, Benguella EA, Alarcao ACJ, Oliveira APR, Pelloso SM, Carvalho MDB. [Data collection via web: supporting tool in sensitive issues approach]. J Health Inform. 2016 Dec;8(Compl):184-9. Portuguese.

Portugal FB, Campo MR, Correia CR, Goncalves DA, Ballester D, Tofoli LF, et al. Social support network, mental health and quality of life: a cross-sectional study in primary care. Cad Saude Publica. 2016 Dec 22;32(12):e00165115. doi: 10.1590/0102-311X00165115.

Reis CT, Laguardia J, Vasconcelos AGG, Martins M. Reliability and validity of the brazilian version of the hospital survey on patient safety culture (HSOPSC): a pilot study. Cad Saude Publica. 2016 Dec 1;32(11):e00115614. doi: 10.1590/0102-311X00115614.

Rivera FJU, Artmann E. Innovation and communicative action: health management networks and technologies. Cad Saude Publica. 2016 Nov 3;32Suppl 2(Suppl 2):e00177014. doi: 10.1590/0102-311X00177014.

Zhu YX, Li T, Fan SR, Liu XP, Liang YH, Liu P. Health-related quality of life as measured with the short-form 36 (SF-36) questionnaire in patients with recurrent vulvovaginal candidiasis. Health Qual Life Outcomes. 2016 Apr 29;14:65. doi: 10.1186/s12955-016-0470-2.

Hey AP, Caveiao C, Montezeli JH, Visentin A, Takano TM, Buratti FMS. [Media used by patients: information about cancer after diagnosis and during treatment]. J Res Fundam Care Online. 2016 Jul/Sep;8(3):4697-703. doi: 10.9789/2175-5361.2016.v813.4697-4703. Portuguese.

Skonnord T, Steen F, Skjeie H, Fetveit A, Brekke M, Klovning A. Survey email scheduling and monitoring in eRCTs (SESAMe): a digital tool to improve data collection in randomized controlled clinical trials. J Med Internet Res. 2016 Nov 22;18(11):e311.

Fine JD. Epidemiology of inherited epidermolysis bullosa based on incidence and prevalence estimates from the National Epidermolysis Bullosa Registry. JAMA Dermatol. 2016 Nov 1;152(11):1231-1238. doi: 10.1001/jamadermatol.2016.2473.

Fine JD, Eady RAJ, Bauer EA, Bauer JW, Bruckner-Tuderman L, Heagerty A, et al. The classification of inherited epidermolysis bullosa (EB): report of the third international consensus meeting on diagnosis and classification of EB. J Am Acad Dermatol. 2008 Jun;58(6):931-50. doi: 10.1016/j.jaad.2008.02.004.

Williams EF, Gannon K, Soon K. The experiences of young people with epidermolysis bullosa simplex: a qualitative study. J Health Psychol. 2011 Jul;16(5):701-10. doi: 10.1177/1359105310387954.

Margari F, Lecce PA, Santamato W, Ventura P, Sportelli N, Annicchiarico G, et al. Psychiatric symptoms and quality of life in patients affected by epidermolysis bullosa. J Clin Psychol Med Settings. 2010 Dec;17(4):333-9. doi: 10.1007/s10880-010-9205-4.

Frew JW, Martin LK, Nijisten T, Murrell DF. Quality of life evaluation in epidermolysis bullosa (EB) through the development of the QOLEB questionnaire: an EB-specific quality of life instrument. Br J Dermatol. 2009 Dec;161(6):1323-30. doi: 10.1111/j.1365-2133.2009.09347.x.

Adni T, Martin K, Mudge E. The psychosocial impact of chronic wounds on patients with severe epidermolysis bullosa. J Wound Care. 2012 Nov;21(11):528, 530-6, 538.

Angelis A, Kanavos P, Lopez-Bastida J, Linertova R, Oliva-Moreno J, Serrano-Aguilar P, et al. Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:31-42. doi: 10.1007/s10198-016-0783-4.

Mazzon JA, Guagliardi JA, Fonseca JS. [The method of data collection by mail: an exploratory study]. In: Mazzon JA, Guagliardi JA, Fonseca JS. [Marketing: applications of quantitative methods]. São Paulo: Atlas; 1983. Portuguese.

Fenner Y, Garland SM, Moore EE, Jayasinghe Y, Fletcher A, Tabrizi SN, et al. Web-based recruiting for health research using a social networking site: an exploratory study. J Med Internet Res. 2012 Feb 1;14(1):e20. doi: 10.2196/jmir.1978.

Ramo DE, Prochaska JJ. Broad reach and targeted recruitment using facebook for an online survey of young adult substance use. J Med Internet Res. 2012 Feb 23;14(1):e28. doi: 10.2196/jmir.1878.

Edward P, Robert I, Clarke M, DiGuiseppi C, Pratap S, Wentz R, et al. Increasing response rates to postal questionnaires: systematic review. BMJ. 2002 May 18;324(7347):1183.

Sprague S, Swiontkowski MF, Schemitsch EH, Tornetta P, et al. Internet versus mailed questionnaires: a randomized comparison (2). J Med Internet Res. 2004 Sep 24;6(3):e30.

Kongsved SM, Basnov M, Holm-Christensen K, Hjollund NH. Response rate and completeness of questionnaires: a randomized study of internet versus paper-and-pencil versions. J Med Internet Res. 2007 Sep 30;9(3):e25.

Frandsen M, Walters J, Ferguson SG. Exploring the viability of using online social media advertising as a recruitment method for smoking cessation clinical trials. Nicotine Tob Res. 2014 Feb;16(2):247-51. doi: 10.1093/ntr/ntt157.

Dainesi SM, Goldbaum M. E-survey with researchers, members of ethics committees and sponsors of clinical research in Brazil: an emerging methodology for scientific research. Rev Bras Epidemiol. 2012 Dec;15(4):705-13.

Globo. G1. [Brazil overtakes US and Bric countries in use of social networks, says research]. 2013 Jul 2[Access 2017 Dec 28]. Available from: Portuguese.

Close S, Smaldone A, Fennoy I, Reame N, Grey M. Using information technology and social networking for recruitment of research participants: experience from an exploratory study of pediatric Klinefelter syndrome. J Med Internet Res. 2013 Mar 19;15(3):e48. doi: 10.2196/jmir.2286.

The Brazilian Journal of Oral Sciences uses the Creative Commons license (CC), thus preserving the integrity of the articles in an open access environment.


Download data is not yet available.