26
views
0
recommends
+1 Recommend
1 collections
    0
    shares

      Patient Preference and Adherence (submit here)

      This international, peer-reviewed Open Access journal by Dove Medical Press focuses on the growing importance of patient preference and adherence throughout the therapeutic process. Sign up for email alerts here.

      34,896 Monthly downloads/views I 2.314 Impact Factor I 3.8 CiteScore I 1.14 Source Normalized Impact per Paper (SNIP) I 0.629 Scimago Journal & Country Rank (SJR)

      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Evaluation of a prototype electronic personal health record for patients with idiopathic thrombocytopenic purpura

      research-article

      Read this article at

      ScienceOpenPublisherPMC
      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Background

          Patients with rare diseases often lack information about the disease itself and appropriate health care, leading to poor quality of life. Personal health records provide health information which can then be shared between multiple health care providers. Personal health records may also offer a tool for capturing patients’ reported outcomes, thus enhancing their empowerment and improving communication with health care professionals. We conducted a pilot study to evaluate the usability of Sanoia, a freely accessible personal health record, which was customized for patients with the rare disease, idiopathic thrombocytopenic purpura (ITP).

          Methods

          The Sanoia interface was expanded with ITP-specific tools. A prospective study was conducted at the referent center to evaluate the usability of this new interface (referred to here as the “tool”) by patients. Forty-three patients were randomized into groups to use or to not use the tool. Its use was evaluated by a specific questionnaire and by surveying individual patient adherence profiles. Evaluation of health-related quality of life using the ITP patient assessment questionnaire, was performed at baseline and after 1, 3, and 6 months via postal mail.

          Results

          The groups were similar at inclusion in terms of characteristics, including global quality of life. During the study period, the tool was used to update the personal records of 19/28 patients (68%), with a median of two connections to the tool (range 1–12) plus access by various health care professionals (n = 22). In addition, 15/19 (78%) patients used the “personal notes” section at least once. We observed no significant changes in quality of life between patients with or without the tool during the study period.

          Conclusion

          This pilot study demonstrates the good usability of the new customized Sanoia interface for patients with ITP. Additional studies will increase its usability further, and its interface could be adapted for use with other rare chronic diseases.

          Author and article information

          Journal
          Patient Prefer Adherence
          Patient Prefer Adherence
          Patient preference and adherence
          Dove Medical Press
          1177-889X
          2012
          10 October 2012
          : 6
          : 725-734
          Affiliations
          [1 ]Service de Médecine Interne, Centre de Compétence pour la prise en charge des Cytopénies Auto-immunes, Hôpital de la Conception, Marseille
          [2 ]Service de Santé Publique, Hôpital de la Timone, Marseille
          [3 ]Association AIMSU, Maison des Associations, La Ciotat, France
          Author notes
          Correspondence: Laurent Chiche, Service de Médecine Interne, CHU Conception, 147 Boulevard Baille, 13005 Marseille, France, Tel +33 49138 3762, Fax +33 49 138 3768, Email laurent.chiche@ 123456ap-hm.fr
          Article
          ppa-6-725
          10.2147/PPA.S36320
          3474173
          23077409
          e5b9e8f1-7de0-4692-8817-9578fc1c0be3
          © 2012 Chiche et al, publisher and licensee Dove Medical Press Ltd.

          This is an Open Access article which permits unrestricted noncommercial use, provided the original work is properly cited.

          History
          Categories
          Original Research

          Medicine
          electronic personal health records,rare diseases,idiopathic thrombocytopenic purpura

          Comments

          Comment on this article