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Table 2 Analysis of users’ questions (20th December 2011)

From: empowerment through internet tools in inherited metabolic diseases

Comments/questions’ topics Percentage Comments
Comments related to 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%