title: Attitude of families of patients with genetic diseases to use m-health technologies.
abstract: BACKGROUND
  Dealing with complex chronic disease may take great advantage of mobile health (m-health) technologies. We performed an online survey on the perception of use of m-health technologies among families of patients affected with Down's syndrome, Williams' syndrome, and 22q11 deletion syndrome.
  
  
  METHODS
  The survey included questions on sociodemographic characteristics, availability of a connection to the Internet on different devices, interest in m-health technologies, and functions to be implemented in order to meet family needs. Through multivariate analysis we studied the association between characteristics of enrolled families and interest in m-health.
  
  
  RESULTS
  In total, 166 people completed the questionnaire. Forty-seven percent connected to the Internet through a mobile phone, versus 34% through a tablet. Eighty percent were interested in m-health solutions for their child's disease; the main reasons of interest were saving time (49%) and being more involved in the disease management (49%). Desired m-health services were aimed at rapid consultation with a physician (68%) and at retrieving updated information on research and on ongoing clinical studies (66%). Interest in m-health services was associated with availability of a mobile Internet connection, whereas no association was found with living in a remote area.
  
  
  CONCLUSIONS
  Families of patients with Down's syndrome, Williams' syndrome, and 22q11 deletion syndrome show a positive attitude toward m-health technologies. Such syndromes represent a good model for translating published recommendations into m-health applications, which may improve compliance. Expectations regarding m-health lead to patient empowerment, and m-health applications are perceived as useful not only for people living far away from healthcare centers.
authors.affiliation: IRCCS, Telemedicine Unit, Bambino Gesù Children's Hospital , Rome, Italy .
authors.forename: Alberto E
authors.initials: AE
authors.lastname: Tozzi
authors.forename: Emanuela
authors.initials: E
authors.lastname: Carloni
authors.forename: Francesco
authors.initials: F
authors.lastname: Gesualdo
authors.forename: Luisa
authors.initials: L
authors.lastname: Russo
authors.forename: Massimiliano
authors.initials: M
authors.lastname: Raponi
mesh_terms: D058165:22q11 Deletion Syndrome / Q000235:genetics; D000293:Adolescent; D001294:Attitude to Health; D025063:Chromosome Disorders / Q000235:genetics*; D034201:Computers, Handheld / Q000706:statistics & numerical data; D004314:Down Syndrome / Q000235:genetics; D005260:Female; D006297:Health Services Accessibility / Q000592:standards* / Q000706:statistics & numerical data; D006801:Humans; D008607:Intellectual Disability / Q000235:genetics*; D020407:Internet / Q000295:instrumentation / Q000706:statistics & numerical data*; D016015:Logistic Models; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D010290:Parents / Q000523:psychology*; D000068997:Smartphone / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D017216:Telemedicine / Q000295:instrumentation / Q000379:methods / Q000592:standards*; D013997:Time Factors; D018980:Williams Syndrome / Q000235:genetics
keywords: mobile health; pediatrics; telehealth; telemedicine