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H03 Experiences of outpatients with huntington’s disease with case management; a qualitative study
  1. Cindy Kruijthof,
  2. Jonieke Bredewold,
  3. Loes van Dusseldorp
  1. Atlant, Huntington Centre of Expertise, Apeldoorn, the Netherlands


Background The complexity and severeness of Huntington’s disease (HD) acquires good quality of care to reduce disruption of the patient system, prevent crisis situations and prevent early admission in a nursing home. Case management (CM) is a widely used and strongly promoted complex intervention for organizing and coordinating care at the level of the individual, with the aim of providing long-term community care.

Atlant, a Huntington Centre of Expertise in the Netherlands, deploys case managers for care at outpatients with HD, in their living environment. Experiences and meanings of outpatients with CM and the impact of case managers’ care, guidance and support for quality of life is not examined before.

Aim To explore how outpatients with HD experience the care, guidance and support received from a case manager.

Methods A qualitative design using semi-structured interviews to collect experiences and meanings with CM of outpatients with HD.

Preliminary Results During a pilot study eight persons were interviewed; two man and six women, age 35 – 75 years. Analysis of the interviews revealed five themes: working process, activities of the case manager, appreciation of the case manager, supporting family members, and quality of life. For these themes participants highly valued the expertise, accessibility, support and relationship of trust with the case manager. During June and July 2021 a follow-up of the study will take place.

Early Conclusions Participants in this pilot study - outpatients receiving CM - are satisfied and valued the support of the case manager as positive. Tailoring needs and wishes, and structural evaluation of the provided care, guidance and support will contribute positively to the individual experiences.

  • case management
  • outpatients Huntington’s disease
  • experiences
  • Huntington’s disease
  • coordinating care
  • quality of life
  • HD

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