Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort.
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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, Rascovsky Katya, Sengdy Pheth, Shaw Leslie, Tatton Nadine, Taylor Joanne, Toga Arthur, Trojanowski John, Weintraub Sandra, Wong Bonnie, Wszolek Zbigniew, Boeve Bradley F, Boxer Adam, Rosen Howard, LEFFTDS Consortium
Аннотация
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.