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.
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 identif...
| Publicado en: | Neuropsychological Rehabilitation Vol. 30; no. 6; pp. 1150 - 1169 |
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| Autores principales: | , , , , |
| Formato: | Journal Article |
| Publicado: |
Taylor & Francis Ltd
Jul2020
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=144260715&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 144260715 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09602011 BB7 jtl: Neuropsychological Rehabilitation issn: 09602011 maglogo: N pubinfo: dt: Jul2020 vid: 30 iid: 6 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 144260715 144260715 NLM30849283 10.1080/09602011.2018.1564675 NLM30849283 144260715 ppf: 1150 ppct: 19 formats: tig: atl: 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. aug: au: Sherman, Carey Wexler Iyer, Ravi Abler, Victor Antonelli, Alexandria Carlozzi, Noelle E. affil: Family Care Strategies, LLC, Ann Arbor, MI, USA sug: ab: 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. pubtype: Academic Journal doctype: Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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