Project DMD Guide
Title: Extension and Evaluation of a Guidebook Application for Duchenne Muscular Dystrophy to empower affected Families
Active period: September 2013 – May 2015 (21 months)
Project lead: Michael Braun
Partners: Janbernd Kirschner (Department of Neuropediatrics and Muscle Disorders, Medical Center – University of Freiburg)
Funding: Nachwuchsakademie Versorgungsforschung Baden-Württemberg (an initiative of the Ministerium für Wissenschaft, Forschung und Kunst BW, and the Ministerium für Arbeit und Sozialordnung, Familie, Frauen und Senioren BW)
Support: Koordinierungsstelle Versorgungsforschung Freiburg, head: Werner Vach
DMD and SMA patient registry for Germany and Austria
Empowerment of patients and their relatives is becoming more and more important. In this, health information for lay people plays a crucial role. A growing number of these information services are provided as applications for mobile devices, especially for smartphones. The benefits of mobile applications have hardly been investigated systematically yet. It is assumed that health information applications entail diverse benefits. Hereby, the greater interactivity of the applications to other media may play a central role. This is especially applies with respect to empowerment, under the assumption that appropriate action mechanisms are trained by the active employment.
AIM OF THE STUDY
The aim of the project is to evaluate the effect of an application on the self-efficacy of Duchenne patients and their relatives. In addition, data on the distribution of the application, its usability and possible barriers for its usage will be collected.
To investigate the question, quantitative surveys and qualitative interviews will be conducted with stakeholders. Primary target is the increase of self-efficacy in Duchenne patients and their relatives after the intervention with the mobile guidebook application. In addition, data on the use of utility services, the usability and the use of individual functions are collected.
As intervention an application that contains the guide for families with Duchenne patients is used and extended by interactive functions (e.g. to document disease parameters or to remind of regular examinations). On the one hand, questionnaires with families of Duchenne patients that are registered in the register of Duchenne and Becker muscular dystrophies are conducted to collect data. On the other hand, qualitative interviews are scheduled with parents to gain information about their expectations and attitudes towards mobile applications.
The study was approved by the Ethics Committee of the University of Freiburg (application no. 362/13). It is registered in the German Clinical Trials Register (DRKS, identification no. DRKS00005276), and in the International Clinical Trials Registry Platform (ICTRP) of the World Health Organization (WHO). The Universal Trial Number (UTN) of the study is U1111-1147-9409.