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K21 Consensus on the functional diagnosis and treatment of ambulatory huntington’s disease patients. a problem oriented goal directed approach
  1. Ruth Veenhuizen1,2,
  2. Lia de Jager3,
  3. Karen Lammertsen4,
  4. Hanneke Nijsten5,
  5. Rina van der Doelen6,
  6. Joyce Heffels7,
  7. Jaap Wagenaar8
  1. 1Noorderbreedte Care group, Leeuwarden, The Netherlands
  2. 2Free University Medical Centre, VUmc, Amsterdam, The Netherlands
  3. 3Huntington Centre Topaz Overduin, Katwijk, The Netherlands
  4. 4Huntington Expert Centre Atlant, Apeldoorn, The Netherlands
  5. 5Hanneke Nijsten, Archipel, Eindhoven, The Netherlands
  6. 6De Riethorst Stromenland, Raamsdonksveer, The Netherlands
  7. 7Land van Horne, Weert, The Netherlands
  8. 8Amstelring, Amsterdam, The Netherlands

Abstract

Introduction Huntington’s disease (HD) patients experience functional deterioration and disinhibitions in the behavioural, cognitive, and motor domain. Frequently, patients spend their last years in a nursing home (NH). To meet the wish of most patients to stay home as long as possible, outreaching multidisciplinary diagnosis, treatment and care has been developed. In the Netherlands this innovative way of treating HD-patients at home is based on international guidelines of EHDN ‘Standards of Care’ and on the vision of Huntington Network Netherlands to provide HD families with diagnosis, treatment and care by expert doctors, therapists and nurses from the cradle to the grave all over the country.

Methods Through a Delphi procedure with the 6 participating multidisciplinary teams, from NH’s specialised in HD, the care programme for ambulatory patients was translated to a practical consensus of procedures and working methods.

Results Consensus was reached for outreaching multidisciplinary diagnosis, treatment and care. A visit to the outpatient department comprises functional diagnostics, multidisciplinary analysis, feedback and consent, and start of the implementation of treatment at home. Patients visit the outpatient department with their informal caregiver at least 2 times per year. Patient and caregiver are seen together as well as separately. Responsibility for the execution of the treatment and care plan is in the hands of the specialist in charge and the case manager. Close collaboration with GP, neurologist, psychiatrist and with therapists in the home setting is evident.

Conclusion A Delphi procedure resulted in consensus on the multidisciplinary home treatment of HD patients and their families.

  • outreaching
  • multidisciplinary
  • treatment

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