Aims

The primary purpose of this working group is to improve quality of treatment and care delivered to HD patients. From being at risk until the 5th stage of the disease and finally death, treatment and care by experts should be accessible for patients and their families throughout the world. The working group will reach this mission by offering guidelines and coordination processes, which are evidence based or subject to scientific evaluation. Collaboration with patients is pivotal to obtain patient-centeredness. Network-based processes will lead to efficacy and efficiency.

Aims of the working group

    1. Improve knowledge on coordinated multidisciplinary treatment and care for HD patients and their families in all disease stages.
      • Review existing evidence on patient/family needs
      • Generation of position paper on best practice networks for HD families based on experience and knowledge from existing networks on HD treatment and care
      • Describing the ideal patient care trajectory, from being at risk throughout treatment and care from early to advanced disease stages.
      • Assessing research on facilitators and barriers in organising best practice networks.
      • Investigating care delivery and ways for improvement in mid-stage to advanced disease phases (barriers and facilitators)
  • Improve Client satisfaction with treatment and care provided
      • Assess patient satisfaction survey on provision of treatment and care.
      • Carry out and publish data mining projects using Registry/Enroll data to enhance understanding age of- and reasons for admission to a nursing home or long-term care facility.
  • Guidelines disclosure
      • Disclose and update symptomatic treatment and care guidelines of relevant therapies not yet covered by other working groups
        • Occupational therapy
        • Speech and Language therapy
        • Social work
        • Dietetics
        • Oral/dental care
        • Nursing
        • End of life issues
        • Others (music therapy, psychomotor therapy, etc.)
  • Promoting collaboration
    • within EHDN (other working groups)
    • with EHA (European Huntington Association) to include proper patient/family perspective and ensure close involvement of HD families.
    • across countries and throughout the world by offering best practices on coordinated multidisciplinary networks and helping other countries to develop their own tailor-made best practice.

Projects

A standard of care for Huntington’s disease: who, what and why https://www.futuremedicine.com/doi/pdf/10.2217/nmt.11.85
Coordinated multidisciplinary care for ambulatory Huntington’s disease patients. Evaluation of 18 months of implementation
https://ojrd.biomedcentral.com/articles/10.1186/1750-1172-6-77
Huntington’s Disease Outpatient Clinic for Functional Diagnosis and Treatment: Coming to Consensus: How Long Term Care Facility Procedures Complement Specialist Diagnosis and Treatment
https://content.iospress.com/articles/journal-of-huntingtons-disease/jhd180298
Unmet needs for healthcare and social support services in patients with Huntington’s disease: a cross-sectional population-based study
https://ojrd.biomedcentral.com/articles/10.1186/s13023-015-0324-8
Health-related quality of life and unmet healthcare needs in Huntington’s disease
https://hqlo.biomedcentral.com/articles/10.1186/s12955-016-0575-7
Assistive Technology for Cognition and Health-related Quality of Life in Huntington’s Disease
https://content.iospress.com/articles/journal-of-huntingtons-disease/jhd160210

Contact

Lead Facilitators:
Family perspective:
Associated EHDN Language Area Coordinator:
Agnieszka Jaciubek, EHDN Lanco
Poland