The internet user profile of Italian families of patients with rare diseases: a web survey

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.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.

Health information behaviour of rare disease patients: seeking, finding and sharing health information

“…Due to scarce knowledge about rare diseases and insufficient information provision by health care providers, many information needs of rare disease patients are unmet and patients are often forced to seek health information on their own. For many patients, personal contacts, either through patient associations or online, played a major role in information acquisition (Fox, ; Huyard, ; Limb et al., ; Litzkendorf et al., ; Morgan et al., ; Pauer et al., ; Tozzi et al., ). Our findings are consistent with the results of previous studies, but provide additional insights into information behaviour of rare disease patients, and especially the role of connecting and peer‐to‐peer information sharing.…”

“…We know from previous studies that patients actively engage in seeking health information right after diagnosis with disease prognosis being their primary information need at first (Fox, ; Limb et al., ; Litzkendorf et al., ; Morgan et al., ; Tozzi et al., ). Our study confirms this, but shows as well that the chronic nature of rare conditions, not knowing their causes, and not having a specific cure, is motivation for seeking health information continuously.…”

Social Media Methods for Studying Rare Diseases

“…9 Given this enormous number of potential study subjects, medicine has a growing interest in the use of social media in the context of research. One study showed that families dealing with rare diseases are active in social media communities, 10 and a few reports demonstrate the use of social media to recruit subjects for broad population-based studies, studies of more common diseases, or small studies of less common diseases. [11][12][13][14] To our knowledge, only 1 study has reported using primarily social media in a prospective study of a very rare disease: an online support group of 12 individuals was accessed to obtain consent for a study of spontaneous coronary artery dissection.…”

Portal for Families Overcoming Neurodevelopmental Disorders (PFOND): Implementation of a Software Framework for Facilitated Community Website Creation by Nontechnical Volunteers

“…Although the information in no way diminishes the necessity for professional advice and counselling, families provided with improved online information about emerging clinical research may develop a deeper understanding and therefore be better equipped to discuss matters and concerns with their health care providers [37-39]. Ideally, the information presented would accelerate the dissemination of information about identification of beneficial approaches to the disorder, such as available treatments, dietary changes, or useful devices [39,40]. …”