J Am Med Inform Assoc - Survey non-response in an internet-mediated, longitudinal autism research study.


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JECTIVE: To evaluate non-response rates to follow-up online surveys using a prospective cohort of parents raising at least one child with an autism spectrum disorder. A secondary objective was to investigate predictors of non-response over time.MATERIALS AND METHODS: Data were collected from a US-based online research database, the Interactive Autism Network (IAN). A total of 19,497 youths, aged 1.9-19 years (mean 9 years, SD 3.94), were included in the present study. Response to three follow-up surveys, solicited from parents after baseline enrollment, served as the outcome measures. Multivariate binary logistic regression models were then used to examine predictors of non-response.RESULTS: 31,216 survey instances were examined, of which 8772 or 28.1% were partly or completely responded to. Results from the multivariate model found non-response of baseline surveys (OR 28.0), years since enrollment in the online protocol (OR 2.06), and numerous sociodemographic characteristics were associated with non-response to follow-up surveys (all p<0.05).DISCUSSION: Consistent with the current literature, response rates to online surveys were somewhat low. While many demographic characteristics were associated with non-response, time since registration and participation at baseline played the greatest role in predicting follow-up survey non-response.CONCLUSION: An important hazard to the generalizability of findings from research is non-response bias; however, little is known about this problem in longitudinal internet-mediated research (IMR). This study sheds new light on important predictors of longitudinal response rates that should be considered before launching a prospective IMR study.

Resumo Limpo

jectiv evalu nonrespons rate followup onlin survey use prospect cohort parent rais least one child autism spectrum disord secondari object investig predictor nonrespons timemateri method data collect usbas onlin research databas interact autism network ian total youth age year mean year sd includ present studi respons three followup survey solicit parent baselin enrol serv outcom measur multivari binari logist regress model use examin predictor nonresponseresult survey instanc examin part complet respond result multivari model found nonrespons baselin survey year sinc enrol onlin protocol numer sociodemograph characterist associ nonrespons followup survey pdiscuss consist current literatur respons rate onlin survey somewhat low mani demograph characterist associ nonrespons time sinc registr particip baselin play greatest role predict followup survey nonresponseconclus import hazard generaliz find research nonrespons bias howev littl known problem longitudin internetmedi research imr studi shed new light import predictor longitudin respons rate consid launch prospect imr studi

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