Experiences of Ambulatory Patients With Huntington's Disease With Case Management: A Qualitative Study

Huntington's disease (HD) requires high-quality care to reduce disruption of the patient system, prevent crisis situations, and prevent early admission in a nursing home. In the Netherlands, case management has been available for the last to 9 years for people with HD. However, there is a notable gap in understanding experiences and beliefs of HD patients regarding case managers' care, guidance, and support for quality of life. To improve the international quality of care for people with HD, insight in experiences of ambulatory HD patients with the care, guidance, and support received from a case manager HD (CMHD) is crucial.

Ambulatory care.

Ambulatory patients with HD highly appreciate and value the role and support of the CMHD. This was reflected in four themes: (1) the CMHD as a person, with commitment, sympathy, and reliability as central concepts; (2) the CMHD as a professional, with the key roles of coordinator, point of contact, expert, and supporter; (3) impact of the CMHD on quality of life, with support of coping with decline and monitoring the home situation as important subthemes; and (4) support of the CMHD for family members, with providing help and giving attention as subthemes. This insight into patients' experiences of the CMHD's role adds value to the improvement of the international quality of care for people with HD.

Commitment, expertise, support for both family members and patients, and bond of trust from the CMHD are experienced as very valuable. These qualitative findings from a patient's perspective add significantly to the body of knowledge on CMHD's role and practices as "spider at the center of the web."