Perceptions of the impact of chorea on health-related quality of life in Huntington disease (HD): A qualitative analysis of individuals across the HD spectrum, family members, and clinicians.
Perceptions of the impact of chorea on health-related quality of life in Huntington disease (HD): A qualitative analysis of individuals across the HD spectrum, family members, and clinicians.
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DOI：
10.1080/09602011.2018.1564675
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发表时间：
2020-07
影响因子：
2.7
通讯作者：
Carlozzi NE
中科院分区：
文献类型：
--
作者：
Sherman CW;Iyer R;Abler V;Antonelli A;Carlozzi NE
舞蹈病是亨廷顿病（HD）的标志性症状，其特征在于影响全身的不自主运动，其可干扰日常功能并影响健康相关的生活质量（HRQOL）。描述舞蹈病对日常功能和HRQOL的影响，并确定患者、护理人员和提供者对舞蹈病的感知和体验模式。数据来自明确HD患者（n=8例早期HD; n=16例晚期HD）、高危或前驱HD患者（n=16）、家庭HD护理人员（n=17）和HD临床医生（n=25）的焦点组。焦点小组录音逐字转录和分析，通过不断的比较，以确定有意义的和突出的主题与舞蹈病的生活。确定的舞蹈病影响的全球主题包括：观看舞蹈病，耻辱的经验，以及对独立和关系的限制。与特定受访者群体不同的主题包括：警惕（风险，前驱）;适应舞蹈病（早期）;丧失自主权和社会生活（晚期）;监测参与（家庭护理人员）和安全（临床提供者）。患有舞蹈病的生活显著限制了HD疾病谱中的日常功能、相互作用和HRQOL。通过适当的舞蹈病管理来解决这些影响，可能会提高功能，HRQOL和HD患者及其家人的整体满意度。
Chorea, a hallmark symptom of Huntington’s disease (HD), is characterized by jerky involuntary movements affecting the whole body that can interfere with daily functioning and impact health-related quality of life (HRQOL). To characterize chorea’s impact on everyday functioning and HRQOL and identify patterns of perception and experiences of chorea among patients, caregivers, and providers. Data from focus groups of individuals with manifest HD (n=8 early-stage HD; n=16 late-stage HD), individuals at-risk or prodromal HD (n=16), family HD caregivers (n=17), and HD clinicians (n=25). Focus group recordings were transcribed verbatim and analyzed via constant comparison to identify meaningful and salient themes of living with chorea. Global themes of chorea’s impact identified included: watching for chorea, experiences of stigma, and constraints on independence and relationships. Themes distinct to specific respondent groups included: Vigilance (at- risk, prodromal); adaptation to chorea (early-stage); loss of autonomy and social life (late-stage); monitoring engagement (family caregivers) and safety (clinical providers). Living with chorea significantly constrains daily functioning, interactions, and HRQOL across the HD disease spectrum. Addressing these impacts via appropriate management of chorea can potentially enhance functioning, HRQOL, and overall satisfaction for persons with HD and their families.
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DOI：
10.1002/ajmg.b.31079
发表时间：
2010-07
影响因子：
2.8
作者：
Erwin, Cheryl;Williams, Janet K.;Juhl, Andrew R.;Mengeling, Michelle;Mills, James A.;Bombard, Yvonne;Hayden, Michael R.;Quaid, Kimberly;Shoulson, Ira;Taylor, Sandra;Paulsen, Jane S.
通讯作者：
Paulsen, Jane S.
影响因子：
2.6
作者：
Frank S
通讯作者：
Frank S
DOI：
10.3233/jhd-140115
发表时间：
2014
期刊：
Journal of Huntington's disease
影响因子：
--
作者：
Carlozzi NE;Miciura A;Migliore N;Dayalu P
通讯作者：
Dayalu P
影响因子：
2.5
作者：
Busse M;Quinn L;Dawes H;Jones C;Kelson M;Poile V;Trubey R;Townson J;Edwards RT;Rosser A;Hood K
通讯作者：
Hood K
影响因子：
3
作者：
Dawes, H.;Collett, J.;Busse, M.
通讯作者：
Busse, M.