Literature DB >> 18175350

Patient and caregiver quality of life in Huntington's disease.

Rebecca E Ready1, Melissa Mathews, Anne Leserman, Jane S Paulsen.   

Abstract

Little is known about subjective perceptions of quality of life (QOL) in Huntington's disease (HD). The current study determined correlates of patient and caregiver QOL and assessed change over time. Participants were 22 patient-caregiver dyads, who rated QOL at baseline and 6 months later. Overall, patients' functional and cognitive impairment were significantly correlated with patient and caregiver QOL. Neuropsychiatric symptoms had differential impact on patient and caregiver QOL. Furthermore, when patients recalled their QOL about a previous time, their recall may have been negatively biased. Clinical implications of results are discussed. Future work is needed because subjective QOL is an important outcome measure in therapeutic trials. 2008 Movement Disorder Society

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Year:  2008        PMID: 18175350      PMCID: PMC3789516          DOI: 10.1002/mds.21920

Source DB:  PubMed          Journal:  Mov Disord        ISSN: 0885-3185            Impact factor:   10.338


  44 in total

Review 1.  Huntington's disease and its association with psychopathology.

Authors:  N De Marchi; R Mennella
Journal:  Harv Rev Psychiatry       Date:  2000 Jan-Feb       Impact factor: 3.732

2.  A cross sectional study on determinants of quality of life in ALS.

Authors:  A Chiò; A Gauthier; A Montuschi; A Calvo; N Di Vito; P Ghiglione; R Mutani
Journal:  J Neurol Neurosurg Psychiatry       Date:  2004-11       Impact factor: 10.154

3.  Retest effects and cognitive decline in longitudinal follow-up of patients with early HD.

Authors:  A C Bachoud-Lévi; P Maison; P Bartolomeo; M F Boissé; G Dalla Barba; A M Ergis; S Baudic; J D Degos; P Cesaro; M Peschanski
Journal:  Neurology       Date:  2001-04-24       Impact factor: 9.910

4.  Commentary on "Health economics and the value of therapy in Alzheimer's disease." Patient-reported outcomes in clinical trials for Alzheimer's disease.

Authors:  Rebecca E Ready
Journal:  Alzheimers Dement       Date:  2007-07       Impact factor: 21.566

5.  The relationship between caregivers' global ratings of Alzheimer's disease patients' quality of life, disease severity, and the caregiving experience.

Authors:  J H Karlawish; D Casarett; J Klocinski; C M Clark
Journal:  J Am Geriatr Soc       Date:  2001-08       Impact factor: 5.562

6.  A four-year prospective study of cognitive functioning in Huntington's disease.

Authors:  Julianna Ward; Jeannie-Marie Sheppard; Barnett Shpritz; Russell L Margolis; Adam Rosenblatt; Jason Brandt
Journal:  J Int Neuropsychol Soc       Date:  2006-07       Impact factor: 2.892

7.  Huntington's disease in Venezuela: 7 years of follow-up on symptomatic and asymptomatic individuals.

Authors:  J B Penney; A B Young; I Shoulson; S Starosta-Rubenstein; S R Snodgrass; J Sanchez-Ramos; M Ramos-Arroyo; F Gomez; G Penchaszadeh; J Alvir
Journal:  Mov Disord       Date:  1990       Impact factor: 10.338

8.  What contributes to quality of life in patients with Parkinson's disease?

Authors:  A Schrag; M Jahanshahi; N Quinn
Journal:  J Neurol Neurosurg Psychiatry       Date:  2000-09       Impact factor: 10.154

Review 9.  Huntington's disease: a review of the literature on prevalence and treatment of neuropsychiatric phenomena.

Authors:  P Naarding; H P Kremer; F G Zitman
Journal:  Eur Psychiatry       Date:  2001-12       Impact factor: 5.361

10.  Profile of cognitive progression in early Huntington's disease.

Authors:  A K Ho; B J Sahakian; R G Brown; R A Barker; J R Hodges; M-N Ané; J Snowden; J Thompson; T Esmonde; R Gentry; J W Moore; T Bodner
Journal:  Neurology       Date:  2003-12-23       Impact factor: 9.910

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  45 in total

1.  A new scale to measure family members' perception of community health care services for persons with Huntington disease.

Authors:  Valmi D Sousa; Janet K Williams; Jack J Barnette; David A Reed
Journal:  J Eval Clin Pract       Date:  2010-03-11       Impact factor: 2.431

2.  Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease.

Authors:  Noelle E Carlozzi; David S Tulsky
Journal:  J Health Psychol       Date:  2012-03-16

3.  Further evidence of reliability and validity of the Huntington's disease quality of life battery for carers: Italian and French translations.

Authors:  Aimee Aubeeluck; Julie Dorey; Ferdinando Squitieri; Emilie Clay; Edward J N Stupple; Annunziata De Nicola; Heather Buchanan; Tiziana Martino; Mondher Toumi
Journal:  Qual Life Res       Date:  2012-07-21       Impact factor: 4.147

4.  Onset of Huntington's disease: can it be purely cognitive?

Authors:  Jane S Paulsen; Jeffrey D Long
Journal:  Mov Disord       Date:  2014-08-20       Impact factor: 10.338

5.  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.

Authors:  Carey Wexler Sherman; Ravi Iyer; Victor Abler; Alexandria Antonelli; Noelle E Carlozzi
Journal:  Neuropsychol Rehabil       Date:  2019-03-08       Impact factor: 2.868

6.  Understanding the need for assistance with survey completion in people with Huntington disease.

Authors:  Elizabeth A Hahn; Nancy R Downing; Julie C Stout; Jane S Paulsen; Becky Ready; Siera Goodnight; Jin-Shei Lai; Jennifer A Miner; Noelle E Carlozzi
Journal:  Qual Life Res       Date:  2017-12-06       Impact factor: 4.147

Review 7.  Therapy development in Huntington disease: From current strategies to emerging opportunities.

Authors:  Audrey S Dickey; Albert R La Spada
Journal:  Am J Med Genet A       Date:  2017-12-08       Impact factor: 2.802

8.  Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington's Disease.

Authors:  Nora E Fritz; Nicholas R Boileau; Julie C Stout; Rebecca Ready; Joel S Perlmutter; Jane S Paulsen; Kimberly Quaid; Stacey Barton; Michael K McCormack; Susan L Perlman; Noelle E Carlozzi
Journal:  J Neuropsychiatry Clin Neurosci       Date:  2018-03-21       Impact factor: 2.198

9.  HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD).

Authors:  N E Carlozzi; S G Schilling; J-S Lai; J S Paulsen; E A Hahn; J S Perlmutter; C A Ross; N R Downing; A L Kratz; M K McCormack; M A Nance; K A Quaid; J C Stout; R C Gershon; R E Ready; J A Miner; S K Barton; S L Perlman; S M Rao; S Frank; I Shoulson; H Marin; M D Geschwind; P Dayalu; S M Goodnight; D Cella
Journal:  Qual Life Res       Date:  2016-08-13       Impact factor: 4.147

10.  Cognitive follow up of a small cohort of Huntington's disease patients over a 5 year period.

Authors:  Sarah L Mason; Ruwani Wijeyekoon; Rachel Swain; Aileen K Ho; Emma L Smith; Barbara Sahakian; Roger A Barker
Journal:  PLoS Curr       Date:  2010-09-02
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