ArticleOrphanet journal of rare diseases2013
The internet user profile of Italian families of patients with rare diseases: a web survey.
Article in Orphanet journal of rare diseases, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.
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Who cites it
29 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Online Health Information Seeking by Parents for Their Children: Systematic Review and Agenda for Further Research.Journal of medical Internet research · 2020Pooled it
- Social Media Use Among Parents and Caregivers of Children With Rare Genetic Diseases: Scoping Review.Journal of medical Internet research · 2025Article
- Analyzing accessibility and suitability of online Krabbe disease resources.Journal of community genetics · 2025Article
- Parental Use of Social Media and the Internet in the Context of Their Child's Genetic Neurodevelopmental Disorder: Mixed Methods Study Nested in the GenROC Cohort Study.JMIR pediatrics and parenting · 2025Article
- Identifying the Impacts, Obstacles and Information Barriers for Parents of Children Living With Genetic Neurodevelopmental Disorders: A Qualitative Study.Health expectations : an international journal of public participation in health care and health policy · 2025Observational
- Tracking Public Interest in Rare Diseases and Eosinophilic Disorders in Germany: Web Search Analysis.JMIR infodemiology · 2025Article
- Exploring the role of digital tools in rare disease management: An interview-based study.Journal of genetic counseling · 2025Article
- Perception of four intellectual and developmental disabilities based on search engine and news portrayal.PloS one · 2025Article
- Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review.Journal of medical Internet research · 2022Article
- Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats.Orphanet journal of rare diseases · 2022Article
- The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ).Orphanet journal of rare diseases · 2022Article
- The Promises and Perils of Social Media for Pediatric Rheumatology.Rheumatic diseases clinics of North America · 2022Review
- Facebook Support Groups for Pediatric Rare Diseases: Cross-Sectional Study to Investigate Opportunities, Limitations, and Privacy Concerns.JMIR pediatrics and parenting · 2022Article
- Parental perception of FIRES outcomes, emotional states, and social media usage.Epilepsia open · 2021Article
- Validating online approaches for rare disease research using latent class mixture modeling.Orphanet journal of rare diseases · 2021Article
- Facebook Support Groups for Rare Pediatric Diseases: Quantitative Analysis.JMIR pediatrics and parenting · 2020Article
- Determining the Topic Evolution and Sentiment Polarity for Albinism in a Chinese Online Health Community: Machine Learning and Social Network Analysis.JMIR medical informatics · 2020Article
- Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study.Journal of medical Internet research · 2019Article
- The experience of parents of children with rare diseases when communicating with healthcare professionals: towards an integrative theory of trust.Orphanet journal of rare diseases · 2019Article
- An Electronic Questionnaire for Liver Assessment in Congenital Disorders of Glycosylation (LeQCDG): A Patient-Centered Study.JIMD reports · 2019Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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.
methodsAll 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.
resultsA total of 516 parents of patients with rare diseases completed the online questionnaire. Mean age was 43 years. 87% of respondents accessed the Internet daily, 40% through their smartphones. 99% had an email account, 71% had a Facebook account. 66% participate in an online forum on health. 99% searched for information on disease characteristics, 93% on therapy, 89% on diagnosis, 63% on alternative therapies, 62% on nutrition and 54% on future pregnancies. 82% stated that web information increased comprehension of the disease, 65% that it improved management of the disease. For 52% web information increased his or her anxiety. 62% recognized diagnosis, 69% discussed online information with their physician. People participating in forums more frequently stated that Internet information was useful for recognizing their child's disease (OR 1.68; 95%CI 1.08-2.63) and for improving its management (OR 1.77; 95%CI 1.11-2.81).
conclusionItalian parents of patients with rare diseases are active Internet users, engaged in information search and in online communities.
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