Abstract：
OBJECTIVE: 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.
METHODS: Ambulatory care.
CONCLUSIONS: 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.
CONCLUSIONS: 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.\"
METHODS: Ambulatory care.
CONCLUSIONS: 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.
CONCLUSIONS: 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.\"
摘要：
目的：亨廷顿病（HD）需要高质量的护理，以减少对患者系统的干扰，预防危机局势，并防止提前入住疗养院。在荷兰,在过去的9年中，HD患者可以进行病例管理。然而,在理解HD患者关于病例管理者护理的经验和信念方面存在显著差距，指导,以及对生活质量的支持。为了提高HD患者的国际护理质量，对门诊HD患者护理经验的洞察力，指导,并且从病例管理器HD（CMHD）获得的支持至关重要。
方法：门诊护理。
结论：动态HD患者高度赞赏和重视CMHD的作用和支持。这反映在四个主题中：（1）CMHD作为一个人，有了承诺,同情,和可靠性作为核心概念；(2)CMHD作为专业人士，协调员的关键角色，接触点,专家,和支持者；(3)CMHD对生活质量的影响，支持应对衰落和监测家庭状况作为重要的次主题；(4)CMHD对家庭成员的支持，提供帮助和给予关注作为次主题。这种对患者对CMHD角色的体验的洞察为改善HD患者的国际护理质量增加了价值。
结论：承诺，专业知识,对家庭成员和患者的支持，来自CMHD的信任纽带经验非常有价值。从患者的角度来看，这些定性发现显着增加了CMHD作为网络中心蜘蛛的角色和实践的知识体系。\"
方法：门诊护理。
结论：动态HD患者高度赞赏和重视CMHD的作用和支持。这反映在四个主题中：（1）CMHD作为一个人，有了承诺,同情,和可靠性作为核心概念；(2)CMHD作为专业人士，协调员的关键角色，接触点,专家,和支持者；(3)CMHD对生活质量的影响，支持应对衰落和监测家庭状况作为重要的次主题；(4)CMHD对家庭成员的支持，提供帮助和给予关注作为次主题。这种对患者对CMHD角色的体验的洞察为改善HD患者的国际护理质量增加了价值。
结论：承诺，专业知识,对家庭成员和患者的支持，来自CMHD的信任纽带经验非常有价值。从患者的角度来看，这些定性发现显着增加了CMHD作为网络中心蜘蛛的角色和实践的知识体系。\"
