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.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.

BackgroundPreconception care may be an efficacious tool to reduce risk factors for adverse pregnancy outcomes that are associated with lifestyles and health status before pregnancy. We conducted a web-based cohort study in Italian women planning a pregnancy to assess whether a tailored web intervention may change knowledge and behaviours associated with risks for adverse pregnancy outcomes.MethodsThe study was entirely conducted on the web on a cohort of Italian women of childbearing age. Data collected at baseline on health status, lifestyles and knowledge of risk factors for adverse pregnancy outcomes were used for generating a tailored document including recommendations for folic acid supplementation, obesity and underweight, smoking, alcohol consumption, vaccinations, chronic and genetic diseases, exposure to medications. Prevalence of risk factors and knowledge was assessed 6 months after the intervention. Logistic regression models were used to explore the factors associated with risk factors after the intervention.ResultsOf the 508 enrolled women, 282 (55.5%) completed the study after 6 months since the delivery of tailored recommendations. At baseline, 48% of the participants took folic acid supplementation (95% CI 43.2; 51.9) and 69% consumed alcohol (95% CI 64.7; 72.9). At the follow up 71% of the participants had a preconception visit with a physician. Moreover we observed a decrease of alcohol consumption (−46.5% 95% CI −53.28; −38.75) and of the proportion of women not taking folic acid supplementation (−23.4% 95% CI −31.0; 15.36). We observed an improvement in knowledge of the information about the preconception behaviours to prevent adverse pregnancy outcomes (20.9% 95% CI 14.6%; 27.1%). Having a preconception visit during follow up was significally associated to an increase in folic acid supplementation (OR 2.53 95% CI 1.40; 4.60).ConclusionsOur results suggest that a tailored web intervention may improve general preconception health in women planning a pregnancy. A web preconception intervention may be integrated with classic preconception care by health professionals. Clinical trials should be conducted to confirm these findings.

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Twitter has the potential to be a timely and cost-effective source of data for syndromic surveillance. When speaking of an illness, Twitter users often report a combination of symptoms, rather than a suspected or final diagnosis, using naïve, everyday language. We developed a minimally trained algorithm that exploits the abundance of health-related web pages to identify all jargon expressions related to a specific technical term. We then translated an influenza case definition into a Boolean query, each symptom being described by a technical term and all related jargon expressions, as identified by the algorithm. Subsequently, we monitored all tweets that reported a combination of symptoms satisfying the case definition query. In order to geolocalize messages, we defined 3 localization strategies based on codes associated with each tweet. We found a high correlation coefficient between the trend of our influenza-positive tweets and ILI trends identified by US traditional surveillance systems.

BackgroundPreconception counseling is effective in reducing the risk of adverse pregnancy outcomes. The Internet is commonly used by women and health professionals to search for health information. We compared the consistency of preconception information found on the Internet with the recommendations published by American Journal of Obstetrics and Gynecology (AJOG) simulating a web search by women of childbearing age and health professionals.MethodsWe reviewed websites resulting from a Google search performed using search strings selected by Italian women of childbearing age and health professionals. We investigated if retrieved information was consistent with AJOG recommendations for preconception care. Logistic regression was used to compare presence of consistent recommendations between women and health professionals.ResultsThe highest frequency of correct recommendations was found for folic acid supplementation (39.4% of websites). Consistency of preconception information did not significantly differ between search strategies except for folic acid supplementation. “Communities and blogs” website category provided less frequently correct recommendations compared with “Medical/Public Agency" category (i.e. folic acid supplementation (aOR 0.254; CI 0.098-0.664; p = <0.01). Commercial links, found in 60% of websites, were associated with presence of correct recommendations excepting few items (i.e. physical exercise (aOR 1.127; CI 0.331-3.840; p = 0.848).ConclusionsPreconception information found is poor and inaccurate regardless of the search is performed by women or health professionals. It is unlikely that information found on the web have any positive impact among women and health professionals in our setting. Strategies to improve preconception information on the web and education of health professionals for web searching of health information should be considered.

We reviewed the epidemiology of pertussis in Italy over the last 125 years to identify disease trends and factors that could have influenced these trends. We described mortality rates (1888-2012), case fatality rates (1925-2012), cumulative incidence rates (1925-2013) and age-specific incidence rates (1974-2013). We compared data from routine surveillance with data from a paediatric sentinel surveillance system to estimate under-notification. Pertussis mortality decreased from 42.5 per 100,000 population in 1890 to no reported pertussis-related death after 2002. Incidence decreased from 86.3 per 100,000 in 1927 to 1 per 100,000 after 2008. Vaccine coverage increased from 32.8% in 1993 to about 96% after 2006. As for under-notification, mean sentinel/routine surveillance incidence ratio increased with age (from 1.8 in <1 yearolds to 12.9 in 10−14 year-olds). Pertussis mortality decreased before the introduction of immunisation. Incidence has decreased only after the introduction of pertussis vaccine and in particular after the achievement of a high immunisation coverage with acellular vaccines. Routine surveillance does not show an increase in cumulative incidence nor in ≥15 year-olds as reported by other countries. Underrecognition because of atypical presentation and the infrequent use of laboratory tests may be responsible for undernotification, and therefore affect incidence reports and management of immunisation programmes.

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In children with neurofibromatosis type 1 (NF1) and optic pathways glioma (OPG), growth hormone (GH) excess has been rarely reported and mainly associated to central precocious puberty. The aim of our study is to evaluate the prevalence of GH excess, the association with central precocious puberty, the relation with tumor site and the evolution over time in a large cohort of children with NF1 and OPG. Sixty-four NF1 children with OPG were evaluated. Patients with stature and/or height velocity >2 SD for age were studied for GH secretion. Seven out of 64 children (10.9%) with NF1 and optic pathways glioma showed GH excess, isolated in 5 cases and associated to central precocious puberty in 2. All the children with GH excess had a tumor involving the chiasma. Children with GH excess underwent medical treatment with lanreotide and a minimum clinical/biochemical follow up of 2 years is reported. The present study demonstrates that GH excess should be considered as a relative frequent endocrine manifestation in NF1 patients, similarly to central precocious puberty. Therefore, these patients should undergo frequent accurate auxologic evaluations. On the other hand, an increase in height velocity in children with NF1, even despite normal ophthalmological exams, can suggest the presence of OPG and therefore represents an indication to perform brain MRI.