Table 2 Analysis of users’ questions (20th December 2011)
From: Guiametabolica.org: empowerment through internet tools in inherited metabolic diseases
Comments/questions’ topics | Percentage | Comments |
|---|---|---|
Comments related to Guiametabolica.org function as a support group | ||
Requests to contact other patients/caregivers | 17.5% | Frequent situation: a family with a young child suffering an IMD with plenty of uncertainties about future, demanding contact with older patients or parents |
Patients’ experiences and reflections, tips or recommendations. | 13.0% | All of them with a positive point of view |
Questions about practical issues of the daily life | 5.8% | They include help for travelling, shopping, offers of special foods not needed anymore, information about government aids for chronic patients… |
Messages exclusively to thank and express feelings | 14.8% | Messages of gratitude and feelings are also incorporated in the vast majority of comments |
Comments regarding educational issues | ||
Information about their IMD | 22.1% | |
Doubts about diagnostic process 5.8% | ||
Doubts about treatments 5.4% | ||
Biochemical and pathophysiological doubts 4.0% | ||
Questions about clinical manifestations and evolution of disease 3.3% | ||
Therapeutic options under investigation 2.2% | ||
Questions about clinical/biochemical follow-up 1.4% | ||
Doubts about other transitory or concomitant situations and their treatment | 10.2% | |
Doubts about dietary treatments and specific recipes. | 16.6% | |