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Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort.
Gentry, Melanie T; Lapid, Maria I; Syrjanen, Jeremy; Calvert, Kendrick; Hughes, Samantha; Brushaber, Danielle; Kremers, Walter; Bove, Jessica; Brannelly, Patrick; Coppola, Giovanni; Dheel, Christina; Dickerson, Bradley; Dickinson, Susan; Faber, Kelley; Fields, Julie; Fong, Jamie; Foroud, Tatiana; Forsberg, Leah; Gavrilova, Ralitza; Gearhart, Deb; Ghoshal, Nupur; Goldman, Jill; Graff-Radford, Jonathan; Graff-Radford, Neill; Grossman, Murray; Haley, Dana; Heuer, Hilary; Hsiung, Ging-Yuek; Huey, Edward; Irwin, David; Jones, David; Jones, Lynne; Kantarci, Kejal; Karydas, Anna; Knopman, David; Kornak, John; Kramer, Joel; Kukull, Walter; Lucente, Diane; Lungu, Codrin; Mackenzie, Ian; Manoochehri, Masood; McGinnis, Scott; Miller, Bruce; Pearlman, Rodney; Petrucelli, Len; Potter, Madeline; Rademakers, Rosa; Ramos, Eliana Marisa; Rankin, Katherine.
Afiliação
  • Gentry MT; Mayo Clinic, Rochester, Minnesota, USA.
  • Lapid MI; Mayo Clinic, Rochester, Minnesota, USA.
  • Syrjanen J; Mayo Clinic, Rochester, Minnesota, USA.
  • Calvert K; Mayo Clinic, Rochester, Minnesota, USA.
  • Hughes S; Mayo Clinic, Rochester, Minnesota, USA.
  • Brushaber D; Mayo Clinic, Rochester, Minnesota, USA.
  • Kremers W; Mayo Clinic, Rochester, Minnesota, USA.
  • Bove J; University of Pennsylvania, Philadelphia, Pennsylvania, USA.
  • Brannelly P; Tau Consortium, Rainwater Charitable Foundation, Fort Worth, Texas, USA.
  • Coppola G; UCLA, Los Angeles, California, USA.
  • Dheel C; Mayo Clinic, Rochester, Minnesota, USA.
  • Dickerson B; Harvard University/MGH, Boston, Massachusetts, USA.
  • Dickinson S; Association for Frontotemporal Degeneration, Radnor, Pennsylvania, USA.
  • Faber K; National Cell Repository for Alzheimer's Disease (NCRAD), Indiana University, Indianapolis, Indiana, USA.
  • Fields J; Mayo Clinic, Rochester, Minnesota, USA.
  • Fong J; UCSF, San Francisco, California, USA.
  • Foroud T; National Cell Repository for Alzheimer's Disease (NCRAD), Indiana University, Indianapolis, Indiana, USA.
  • Forsberg L; Mayo Clinic, Rochester, Minnesota, USA.
  • Gavrilova R; Mayo Clinic, Rochester, Minnesota, USA.
  • Gearhart D; Mayo Clinic, Rochester, Minnesota, USA.
  • Ghoshal N; Washington University, St. Louis, Missouri, USA.
  • Goldman J; Columbia University, New York, New York, USA.
  • Graff-Radford J; Mayo Clinic, Rochester, Minnesota, USA.
  • Graff-Radford N; Mayo Clinic, Jacksonville, Florida, USA.
  • Grossman M; University of Pennsylvania, Philadelphia, Pennsylvania, USA.
  • Haley D; Mayo Clinic, Jacksonville, Florida, USA.
  • Heuer H; UCSF, San Francisco, California, USA.
  • Hsiung GY; University of British Columbia, Vancouver, British Columbia, Canada.
  • Huey E; Columbia University, New York, New York, USA.
  • Irwin D; University of Pennsylvania, Philadelphia, Pennsylvania, USA.
  • Jones D; Mayo Clinic, Rochester, Minnesota, USA.
  • Jones L; Washington University, St. Louis, Missouri, USA.
  • Kantarci K; Mayo Clinic, Rochester, Minnesota, USA.
  • Karydas A; UCSF, San Francisco, California, USA.
  • Knopman D; Mayo Clinic, Rochester, Minnesota, USA.
  • Kornak J; UCSF, San Francisco, California, USA.
  • Kramer J; UCSF, San Francisco, California, USA.
  • Kukull W; National Alzheimer's Coordinating Center (NACC), University of Washington, Seattle, Washington, USA.
  • Lucente D; Harvard University/MGH, Boston, Massachusetts, USA.
  • Lungu C; National Institute of Neurological Disorders and Stroke (NINDS), Bethesda, Maryland, USA.
  • Mackenzie I; University of British Columbia, Vancouver, British Columbia, Canada.
  • Manoochehri M; Columbia University, New York, New York, USA.
  • McGinnis S; Harvard University/MGH, Boston, Massachusetts, USA.
  • Miller B; UCSF, San Francisco, California, USA.
  • Pearlman R; Bluefield Project, San Francisco, California, USA.
  • Petrucelli L; Mayo Clinic, Jacksonville, Florida, USA.
  • Potter M; National Cell Repository for Alzheimer's Disease (NCRAD), Indiana University, Indianapolis, Indiana, USA.
  • Rademakers R; Mayo Clinic, Jacksonville, Florida, USA.
  • Ramos EM; UCLA, Los Angeles, California, USA.
  • Rankin K; UCSF, San Francisco, California, USA.
Alzheimers Dement ; 16(8): 1115-1124, 2020 08.
Article em En | MEDLINE | ID: mdl-32656921
OBJECTIVE: The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects evaluates familial frontotemporal lobar degeneration (FTLD) kindreds with MAPT, GRN, or C9orf72 mutations. Objectives were to examine whether health-related quality of life (HRQoL) correlates with clinical symptoms and caregiver burden, and whether self-rated and informant-rated HRQoL would correlate with each other. METHODS: Individuals were classified using the Clinical Dementia Rating (CDR® ) Scale plus National Alzheimer's Coordinating Center (NACC) FTLD. HRQoL was measured with DEMQOL and DEMQOL-proxy; caregiver burden with the Zarit Burden Interview (ZBI). For analysis, Pearson correlations and weighted kappa statistics were calculated. RESULTS: The cohort of 312 individuals included symptomatic and asymptomatic individuals. CDR® plus NACC FTLD was negatively correlated with DEMQOL (r = -0.20, P = .001), as were ZBI and DEMQOL (r = -0.22, P = .0009). There was fair agreement between subject and informant DEMQOL (κ = 0.36, P <.0001). CONCLUSION: Lower HRQoL was associated with higher cognitive/behavior impairment and higher caregiver burden. These findings demonstrate the negative impact of FTLD on individuals and caregivers.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Cuidadores / Efeitos Psicossociais da Doença / Degeneração Lobar Frontotemporal Idioma: En Ano de publicação: 2020 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Cuidadores / Efeitos Psicossociais da Doença / Degeneração Lobar Frontotemporal Idioma: En Ano de publicação: 2020 Tipo de documento: Article