RESUMO
The goal this study was to understand the preoccupations of e-patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD), through their discussions on social networks, and to compare them with those of members of a specialized association. We collected and analyzed all messages containing an unequivocal expression of the pathology (polycystic kidney disease, PKD, ADPKD, etc.) available on public forums on the French Internet and all french-language messages posted on the forum of the patient group Association Polykystose-France (PKD-France) during 2 years. The automated processing of messages (extraction of themes), using a referential associating each theme with a variety of expressions, allowed classification in different thematic families. 8494themes were extracted from 764 messages sent by 329 different users on 68 public forum websites. The main thematic families were treatments (17%), pathology (16%), signs and symptoms (13%), feelings (11%), healthcare system (7%) and patient life (7%). On the association's forum, 345 messages were sent by 57 different members. The thematic richness was equivalent (number of themes per message: 10.2 versus 11.1 respectively), with 3517 themes, but the thematic families corresponded more to the emotional aspects and daily problems: Feelings (15.5%) came before treatment (14.5%), then anatomy (9%) before the healthcare system (8%) and pathology (7%). Knowing the e-patients' views expressed on the internet will enable physicians to respond to patients real expectations and correct erroneous perceptions. As for the patients, they will know the leading sites of opinion, shared by their peers.