Web Survey Bibliography
The use of the Internet for searching and sharing health information and for health care interactions may have a great potential for families of children affected with rare diseases. We conducted an online survey among Italian families of patients with rare diseases with the objective to describe their Internet user profile, and to explore how Internet use affects their health decisions.
All members of UNIAMIO FIMR, a federation of associations of patients with rare diseases, were invited via mail to participate in an online questionnaire including questions on socio-demographic and clinical information, Internet use with a specific focus on health, and impact of web information on health behaviors. Logistic regression models were used to explore the effect of socio-demographic variables and Internet user profile on dependent variables representing the impact of web information on health behaviors. Multiple imputation by chained equations was applied.
Italian parents of patients with rare diseases are active Internet users, engaged in information search and in online communities.
Physicians, health care facilities and health agencies have a great opportunity to engage in online interactions for empowering families of patients of children affected with rare diseases.
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Web survey bibliography (345)
- Mind the Mode: Differences in Paper vs. Web-Based Survey Modes Among Women With Cancer; 2017; Hagan, T. L.; Belcher, S. M.; Donovan, H. S.
- Web-Based Survey Methodology; 2017; Wright, K. B.
- Handbook of Research Methods in Health Social Sciences; 2017; Liamputtong, P.
- Lessons from recruitment to an internet based survey for Degenerative Cervical Myelopathy: merits of...; 2017; Davies, B.; Kotter, M. R.
- Achieving Strong Privacy in Online Survey; 2017; Zhou, Yo.; Zhou, Yi.; Chen, S.; Wu, S. S.
- Measuring Subjective Health and Life Satisfaction with U.S. Hispanics; 2017; Lee, S.; Davis, R.
- The Effect of Respondent Commitment on Response Quality in Two Online Surveys; 2017; Cibelli Hibben, K.
- In search of best practices; 2017; Kappelhof, J. W. S.; Steijn, S.
- Rates, Delays, and Completeness of General Practitioners’ Responses to a Postal Versus Web-Based...; 2017; Sebo, P.; Maisonneuve, H.; Cerutti, B.; Pascal Fournier, J.; Haller, D. M.
- Web Health Monitoring Survey: A New Approach to Enhance the Effectiveness of Telemedicine Systems; 2017; Romano, M. F.; Sardella, M. V.; Alboni, F.
- Gathering Opinions on Depression Information Needs and Preferences: Samples and Opinions in Clinic Versus...; 2017; Bernstein, M. T.; Walker, J. R.; Sexton, K. A.; Katz, A.; Beatie, B. E.
- Oversampling as a methodological strategy for the study of self-reported health among lesbian, gay and...; 2017; Anderssen, N.; Malterud, K.
- Demographic Question Placement: Effect on Item Response Rates and Means of a Veterans Health Administration...; 2017; Teclaw, R.; Price, M.; Osatuke, K.
- Comparison of response patterns in different survey designs: a longitudinal panel with mixed-mode and...; 2017; Ruebsamen, N.; Akmatov, M. K.; Castell, S.; Karch, A.; Mikolajczyk, R. T.
- Survey mode influence on patient-reported outcome scores in orthopaedic surgery: telephone results may...; 2017; Hammarstedt, J. E.; Redmond, J. M.; Gupta, As.; Dunne, K. F.; Vemula, S. P.; Domb, B. G.
- Comparing Twitter and Online Panels for Survey Recruitment of E-Cigarette Users and Smokers; 2016; Guillory, J.; Kim, A.; Murphy, J.; Bradfield, B.; Nonnemaker, J.; Hsieh, Y. P.
- Web based health surveys: Using a Two Step Heckman model to examine their potential for population health...; 2016; Morrissey, K.; Kinderman, P.; Pontin, E.; Tai, S.; Schwannauer, M.
- “Better do not touch” and other superstitions concerning melanoma: the cross-sectional web...; 2016; Gajda, M.; Kamińska-Winciorek, G.; Wydmański, J.; Tukiendorf, A.
- Methods for Evaluating Respondent Attrition in Web-Based Surveys; 2016; Hochheimer, C. J.; Sabo, R. T.; Krist, A. H.; Day, T.; Cyrus, J.; Woolf, S. H.
- Question order sensitivity of subjective well-being measures: focus on life satisfaction, self-rated...; 2016; Lee, S.; McClain, C.; Webster, N.; Han, S.
- Using Visual Analogue Scales in eHealth: Non-Response Effects in a Lifestyle Intervention; 2016; Kuhlmann, T.; Reips, U.-D.; Wienert, J.; Lippke, S.
- A Case Study on the Use of Propensity Score Adjustments with Web Survey Data; 2016; Parsons, V.
- Using official surveys to reduce bias of estimates from nonrandom samples collected by web surveys; 2016; Beresovsky, V.; Dorfman, A.; Rumcheva, P.
- A Feasibility Study of Recruiting and Maintaining a Web Panel of People with Disabilities; 2016; Chandler, J.
- Exploration of Methods for Blending Unconventional Samples with Traditional Probability Samples; 2016; Gellar, J.; Zhou, H.; D.; Sinclair, M. D.
- Evaluation of mode equivalence of the MSKCC Bowel Function Instrument, LASA Quality of Life, and Subjective...; 2016; Bennett, A. V.; Keenoy, K.; Shouery, M.; Basch, E.; Temple, L. K.
- Population Survey Features and Response Rates: A Randomized Experiment; 2016; Guo, Y.; Kopec, J.; Cibere, J.; Li, L. C.; Goldsmith, C. H.
- Web Health Monitoring Survey: A New Approach to Enhance the Effectiveness of Telemedicine Systems ; 2016; Romano, M. F.; Sardella, M. V.; Alboni, F.
- Question order sensitivity of subjective well-being measures: focus on life satisfaction, self-rated...; 2016; Lee, S.; McClain, C.; Webster, N.; Han, S.
- Facebook, Twitter, & Qr codes: An exploratory trial examining the feasibility of social media mechanisms...; 2016; Gu, L. L.; Skierkowski, D.; Florin, P.; Friend, K.; Ye, Y.
- Helping respondents provide good answers in Web surveys; 2016; Couper, M. P.; Zhang, C.
- The Effects of a Delayed Incentive on Response Rates, Response Mode, Data Quality, and Sample Bias in...; 2016; McGonagle, K., Freedman, V. A.
- Feature phones no barrier to conducting an effective conjoint study ; 2016; de Rooij, R.; Dossin, R.
- Patient preference: a comparison of electronic patient-completed questionnaires with paper among cancer...; 2016; Martin, P.; Brown, M.C.; Espin‐Garcia, O.; Cuffe, S.; Pringle, D.; Mahler, M.; Villeneuve, J.;...
- Detecting Insufficient Effort Responding with an Infrequency Scale: Evaluating Validity and Participant...; 2016; Huang, J. L.; Bowling, N. A.; Liu, Me.; Li, Yu.
- On-line life history calendar and sensitive topics: A pilot study; 2016; Morselli, D.; Berchtold, A.; Granell, J.-C. S.; Berchtold, And.
- An experiment comparing grids and item-by-item formats in web surveys completed through PCs and smartphones...; 2016; Revilla, M.; Toninelli, D.; Ochoa, C.
- Assessing the Effects of Participant Preference and Demographics in the Usage of Web-based Survey Questionnaires...; 2016; Mlikotic, R.; Parker, B.; Rajapakshe, R.
- Improving Inpatient Surveys: Web-Based Computer Adaptive Testing Accessed via Mobile Phone QR Codes; 2016; Chien, T. S.; Lin, W.S.
- Comparing online and telephone survey results in the context of a skin cancer prevention campaign evaluation...; 2016; Hollier, L.P.; Pettigrew, S.; Slevin, T.; Strickland, M.; Minto, C.
- Collecting Data from mHealth Users via SMS Surveys: A Case Study in Kenya; 2016; Johnson, D.
- Effect of a Post-paid Incentive on Response to a Web-based Survey; 2016; Brown, J. A.; Serrato, C. A.; Hugh, M.; Kanter, M. H.; A.; Spritzer, K. L.; Hays, R. D.
- Reducing Underreports of Behaviors in Retrospective Surveys: The Effects of Three Different Strategies...; 2016; Lugtig, P. J.; Glasner, T.; Boeve, A.
- Quantifying Under- and Overreporting in Surveys Through a Dual-Questioning-Technique Design. ; 2016; de Jong , M.; Fox, J.-P.; Steenkamp, J. - B. E. M.
- Take the money and run? Redemption of a gift card incentive in a clinician survey. ; 2016; Chen, J. S.; Sprague, B. L.; Klabunde, C. N.; Tosteson, A. N. A.; Bitton, A.; Onega, T.; MacLean, C....
- Creation and Usability Testing of a Web-Based Pre-Scanning Radiology Patient Safety and History Questionnaire...; 2016; Robinson, T. J.; DuVall, S.; Wiggins III, R
- A multi-group analysis of online survey respondent data quality: Comparing a regular USA consumer panel...; 2016; Golden, L.; Albaum, G.; Roster, C. A.; Smith, S. M.
- The effect of email invitation elements on response rate in a web survey within an online community; 2016; Petrovcic, A.; Petric, G.; Lozar Manfreda, K.
- Quota Controls in Survey Research.; 2016; Gittelman, S. H.; Thomas, R. K.; Lavrakas, P. J.; Lange, V.
- Internet-administered Health-related Quality of Life Questionnaires Compared With Pen and Paper in an...; 2016; Nitikman, M.; Mulpuri, K.; Reilly, C. W.