Literature DB >> 22427174

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

Noelle E Carlozzi1, David S Tulsky.   

Abstract

This qualitative study explored health-related quality of life (HRQOL) in individuals with Huntington disease (HD). Sixteen focus groups were conducted (n = 6 groups with symptomatic HD individuals; n = 5 with individuals who are at-risk or prodromal for HD; n = 3 non-clinical HD caregivers; n = 2 groups with HD clinicians). Qualitative analysis indicated that 28% of focus group comments were related to emotional health, 27% to social participation, 26% to physical health, 10% to cognitive health, and 9% to end of life issues. Findings highlight the importance of developing HD-targeted items to ensure sensitive assessment of HRQOL in HD research and clinical practice.

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Year:  2012        PMID： 22427174      PMCID： PMC3643297          DOI： 10.1177/1359105312438109

Source DB:  PubMed          Journal:  J Health Psychol        ISSN： 1359-1053


  23 in total

1.  Behavioural abnormalities contribute to functional decline in Huntington's disease.

Authors:  J M Hamilton; D P Salmon; J Corey-Bloom; A Gamst; J S Paulsen; S Jerkins; M W Jacobson; G Peavy
Journal:  J Neurol Neurosurg Psychiatry       Date:  2003-01       Impact factor: 10.154

2.  Huntington disease: clinical care and evaluation.

Authors:  I Shoulson; S Fahn
Journal:  Neurology       Date:  1979-01       Impact factor: 9.910

3.  Developing a contemporary patient-reported outcomes measure for spinal cord injury.

Authors:  David S Tulsky; Pamela A Kisala; David Victorson; Denise Tate; Allen W Heinemann; Dagmar Amtmann; David Cella
Journal:  Arch Phys Med Rehabil       Date:  2011-10       Impact factor: 3.966

4.  The neurology quality-of-life measurement initiative.

Authors:  David Cella; Cindy Nowinski; Amy Peterman; David Victorson; Deborah Miller; Jin-Shei Lai; Claudia Moy
Journal:  Arch Phys Med Rehabil       Date:  2011-10       Impact factor: 3.966

5.  Efficacy of levetiracetam in Huntington disease.

Authors:  Marina de Tommaso; Olimpia Di Fruscolo; Vittorio Sciruicchio; Nicola Specchio; Claudia Cormio; Maria Fara De Caro; Paolo Livrea
Journal:  Clin Neuropharmacol       Date:  2005 Nov-Dec       Impact factor: 1.592

Review 6.  The molecular biology of Huntington's disease.

Authors:  L W Ho; J Carmichael; J Swartz; A Wyttenbach; J Rankin; D C Rubinsztein
Journal:  Psychol Med       Date:  2001-01       Impact factor: 7.723

7.  Biological and clinical changes in premanifest and early stage Huntington's disease in the TRACK-HD study: the 12-month longitudinal analysis.

Authors:  Sarah J Tabrizi; Rachael I Scahill; Alexandra Durr; Raymund Ac Roos; Blair R Leavitt; Rebecca Jones; G Bernhard Landwehrmeyer; Nick C Fox; Hans Johnson; Stephen L Hicks; Christopher Kennard; David Craufurd; Chris Frost; Douglas R Langbehn; Ralf Reilmann; Julie C Stout
Journal:  Lancet Neurol       Date:  2010-12-02       Impact factor: 44.182

8.  Patient-reported outcome instrument selection: designing a measurement strategy.

Authors:  Claire F Snyder; Maria E Watson; Joseph D Jackson; David Cella; Michele Y Halyard
Journal:  Value Health       Date:  2007 Nov-Dec       Impact factor: 5.725

9.  Developing a contemporary functional outcome measure for spinal cord injury research.

Authors:  M D Slavin; P A Kisala; A M Jette; D S Tulsky
Journal:  Spinal Cord       Date:  2009-10-20       Impact factor: 2.772

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

Authors:  Rebecca E Ready; Melissa Mathews; Anne Leserman; Jane S Paulsen
Journal:  Mov Disord       Date:  2008-04-15       Impact factor: 10.338
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  41 in total

1.  New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system).

Authors:  N E Carlozzi; N R Downing; M K McCormack; S G Schilling; J S Perlmutter; E A Hahn; J S Lai; S Frank; K A Quaid; J S Paulsen; D Cella; S M Goodnight; J A Miner; M A Nance
Journal:  Qual Life Res       Date:  2016-07-08       Impact factor: 4.147

2.  Validation of Neuro-QoL and PROMIS Mental Health Patient Reported Outcome Measures in Persons with Huntington Disease.

Authors:  Noelle E Carlozzi; Siera Goodnight; Anna L Kratz; Julie C Stout; Michael K McCormack; Jane S Paulsen; Nicholas R Boileau; David Cella; Rebecca E Ready
Journal:  J Huntingtons Dis       Date:  2019

3.  Positive Affect and Well-Being in Huntington's Disease Moderates the Association Between Functional Impairment and HRQOL Outcomes.

Authors:  Rebecca E Ready; Nicholas R Boileau; Stacey K Barton; Jin-Shei Lai; Michael K McCormack; David Cella; Nora E Fritz; Jane S Paulsen; Noelle E Carlozzi
Journal:  J Huntingtons Dis       Date:  2019

4.  Caring for our wounded warriors: A qualitative examination of health-related quality of life in caregivers of individuals with military-related traumatic brain injury.

Authors:  Noelle E Carlozzi; Tracey A Brickell; Louis M French; Angelle Sander; Anna L Kratz; David S Tulsky; Nancy D Chiaravalloti; Elizabeth A Hahn; Michael Kallen; Amy M Austin; Jennifer A Miner; Rael T Lange
Journal:  J Rehabil Res Dev       Date:  2016

5.  Validity of the 12-item World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) in individuals with Huntington disease (HD).

Authors:  Noelle E Carlozzi; Anna L Kratz; Nancy R Downing; Siera Goodnight; Jennifer A Miner; Nicholas Migliore; Jane S Paulsen
Journal:  Qual Life Res       Date:  2015-01-31       Impact factor: 4.147

6.  Health-related quality of life in caregivers of individuals with traumatic brain injury: development of a conceptual model.

Authors:  Noelle E Carlozzi; Anna L Kratz; Angelle M Sander; Nancy D Chiaravalloti; Tracey A Brickell; Rael T Lange; Elizabeth A Hahn; Amy Austin; Jennifer A Miner; David S Tulsky
Journal:  Arch Phys Med Rehabil       Date:  2014-09-17       Impact factor: 3.966

7.  A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.

Authors:  Noelle E Carlozzi; E A Hahn; S A Frank; J S Perlmutter; N D Downing; M K McCormack; S Barton; M A Nance; S G Schilling
Journal:  J Neurol       Date:  2017-11-15       Impact factor: 4.849

8.  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

9.  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

10.  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
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