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.

Publication date: Mar 08, 2019

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 analysed 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.

Sherman, C.W., Iyer, R., , Abler, Antonelli, A., and Carlozzi, N.E. 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. 06388. 2019 Neuropsychol Rehabil.

Concepts Keywords
Chorea Caregiver
Focus Group Quality of life
Focus Groups Chorea
Huntington Huntington’s disease
Jerky Jerky involuntary movements
Prodromal Adaptation chorea
Salient Perception experiences chorea
Spectrum Impacts management chorea
Stigma
Symptom

Semantics

Type Source Name
disease MESH satisfaction
disease MESH involuntary movements
gene UNIPROT JRK
disease DOID Huntington disease
disease MESH Huntington disease
disease DOID chorea
gene UNIPROT IMPACT
disease MESH chorea

Original Article

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