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H05 E-health support for hd patients living at home: results of 3 years e-health support
  1. Jesseke de Man1,
  2. Lia de Jager1,
  3. Wilco Achterberg1,2
  1. 1Topaz Huntington Centre Overduin, Katwijk, The Netherlands
  2. 2Leiden University Medical Center, Leiden, The Netherlands


Background Topaz Huntington Centre Overduin consists of an ambulatory support centre for 100 HD-patients, a daycare facility for 25, and a 70 bed LTCF. Additional support and treatment by video-conferencing via e-health technology (EHT) is used for patients at home.

Aim To describe the results after 3 years of using EHT for support and treatment.

Results EHT has been used by 53 HD patients. A total of 20 patients have stopped using it after 438 mean days, because: admission in a facility (9), cognitive decline (4), it was to confronting with the disease (3), refused to use it (3) or died (1).

33 patients at mean age 47 (27–75) are using the platform at this moment with a mean duration of use of 539 days (28–1283). The services that were provided:

  • Support from the social worker regarding daily life and support system issues (27 patients), 1/1 or 2 weeks

  • Treatment for mood and behavior and acceptance of the disease by the psychologist (11 patients), 1/3 weeks.

  • Treatment for swallowing and speech intelligibility by speech therapist (7 patients), 1/2 weeks.

Conclusion E-health technology can be a sustainable blended care intervention. At our center, we have shown that we can be in intensive contact with our patients who live at home. It gives HD patients the opportunity to ask their questions and contemplate their doubts in a better accessible way. For the organization it is cost-effective because of less travel time and cost.

  • Huntington
  • e-health

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