Attitude of families of patients with genetic diseases to use m-health technologies.

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.

MATERIALS AND

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.