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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).
Carlozzi, N E; Downing, N R; McCormack, M K; Schilling, S G; Perlmutter, J S; Hahn, E A; Lai, J S; Frank, S; Quaid, K A; Paulsen, J S; Cella, D; Goodnight, S M; Miner, J A; Nance, M A.
Affiliation
  • Carlozzi NE; Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA. carlozzi@med.umich.edu.
  • Downing NR; College of Nursing, The University of Iowa, Iowa City, IA, USA.
  • McCormack MK; Department of Pathology, Rowan University, Piscataway, NJ, USA.
  • Schilling SG; Institute for Social Research, University of Michigan, Ann Arbor, MI, USA.
  • Perlmutter JS; Departments of Neurology, Radiology, and Anatomy and Neurobiology, Washington University School of Medicine, St. Louis, MO, USA.
  • Hahn EA; Program in Occupational Therapy and Program in Physical Therapy, Washington University School of Medicine, St. Louis, MO, USA.
  • Lai JS; Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA.
  • Frank S; Center on Outcomes, Research and Education, Evanston Northwestern Healthcare, Northwestern University, Evanston, IL, USA.
  • Quaid KA; Institute for Health Services Research and Policy Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA.
  • Paulsen JS; Beth Israel Deaconess Medical Center, Boston, MA, USA.
  • Cella D; Department of Medical and Molecular Genetics, Indiana University, Indianapolis, IN, USA.
  • Goodnight SM; Department of Psychiatry, Carver College of Medicine, The University of Iowa, Iowa City, IA, USA.
  • Miner JA; Department of Neurology, Carver College of Medicine, The University of Iowa, Iowa City, IA, USA.
  • Nance MA; Department of Psychology, The University of Iowa, Iowa City, IA, USA.
Qual Life Res ; 25(10): 2403-2415, 2016 10.
Article de En | MEDLINE | ID: mdl-27393121

Texte intégral: 1 Collection: 01-internacional Base de données: MEDLINE Sujet principal: Soins terminaux / Maladie de Huntington / Profil d'impact de la maladie Type d'étude: Prognostic_studies / Qualitative_research Aspects: Patient_preference Limites: Adolescent / Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Langue: En Journal: Qual Life Res Sujet du journal: REABILITACAO / TERAPEUTICA Année: 2016 Type de document: Article Pays d'affiliation: États-Unis d'Amérique Pays de publication: Pays-Bas

Texte intégral: 1 Collection: 01-internacional Base de données: MEDLINE Sujet principal: Soins terminaux / Maladie de Huntington / Profil d'impact de la maladie Type d'étude: Prognostic_studies / Qualitative_research Aspects: Patient_preference Limites: Adolescent / Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Langue: En Journal: Qual Life Res Sujet du journal: REABILITACAO / TERAPEUTICA Année: 2016 Type de document: Article Pays d'affiliation: États-Unis d'Amérique Pays de publication: Pays-Bas