Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort
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 an...
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| Veröffentlicht in: | Alzheimer's & dementia 2020-08, Vol.16 (8), p.1115-1124 |
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| creator | 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 |
| description | 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 |
| doi_str_mv | 10.1002/alz.12095 |
| format | Article |
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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.</description><identifier>ISSN: 1552-5260</identifier><identifier>EISSN: 1552-5279</identifier><identifier>DOI: 10.1002/alz.12095</identifier><identifier>PMID: 32656921</identifier><language>eng</language><publisher>United States</publisher><subject>Adolescent ; Adult ; Aged ; Aged, 80 and over ; C9orf72 ; Caregivers - psychology ; Cohort Studies ; Cost of Illness ; Female ; frontotemporal dementia ; Frontotemporal Lobar Degeneration ; GRN ; Humans ; Longitudinal Studies ; Male ; MAPT ; Middle Aged ; quality of life ; Quality of Life - psychology ; tau ; TDP‐43 ; Young Adult</subject><ispartof>Alzheimer's & dementia, 2020-08, Vol.16 (8), p.1115-1124</ispartof><rights>2020 the Alzheimer's Association</rights><rights>2020 the Alzheimer's Association.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c3605-5ce425ca01ec268f2e27a81b41518a73525c9ce231e2912e036f714895e4fdae3</citedby><cites>FETCH-LOGICAL-c3605-5ce425ca01ec268f2e27a81b41518a73525c9ce231e2912e036f714895e4fdae3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1002%2Falz.12095$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1002%2Falz.12095$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,776,780,1411,27901,27902,45550,45551</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/32656921$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Gentry, Melanie T.</creatorcontrib><creatorcontrib>Lapid, Maria I.</creatorcontrib><creatorcontrib>Syrjanen, Jeremy</creatorcontrib><creatorcontrib>Calvert, Kendrick</creatorcontrib><creatorcontrib>Hughes, Samantha</creatorcontrib><creatorcontrib>Brushaber, Danielle</creatorcontrib><creatorcontrib>Kremers, Walter</creatorcontrib><creatorcontrib>Bove, Jessica</creatorcontrib><creatorcontrib>Brannelly, Patrick</creatorcontrib><creatorcontrib>Coppola, Giovanni</creatorcontrib><creatorcontrib>Dheel, Christina</creatorcontrib><creatorcontrib>Dickerson, Bradley</creatorcontrib><creatorcontrib>Dickinson, Susan</creatorcontrib><creatorcontrib>Faber, Kelley</creatorcontrib><creatorcontrib>Fields, Julie</creatorcontrib><creatorcontrib>Fong, Jamie</creatorcontrib><creatorcontrib>Foroud, Tatiana</creatorcontrib><creatorcontrib>Forsberg, Leah</creatorcontrib><creatorcontrib>Gavrilova, Ralitza</creatorcontrib><creatorcontrib>Gearhart, Deb</creatorcontrib><creatorcontrib>Ghoshal, Nupur</creatorcontrib><creatorcontrib>Goldman, Jill</creatorcontrib><creatorcontrib>Graff‐Radford, Jonathan</creatorcontrib><creatorcontrib>Graff‐Radford, Neill</creatorcontrib><creatorcontrib>Grossman, Murray</creatorcontrib><creatorcontrib>Haley, Dana</creatorcontrib><creatorcontrib>Heuer, Hilary</creatorcontrib><creatorcontrib>Hsiung, Ging‐Yuek</creatorcontrib><creatorcontrib>Huey, Edward</creatorcontrib><creatorcontrib>Irwin, David</creatorcontrib><creatorcontrib>Jones, David</creatorcontrib><creatorcontrib>Jones, Lynne</creatorcontrib><creatorcontrib>Kantarci, Kejal</creatorcontrib><creatorcontrib>Karydas, Anna</creatorcontrib><creatorcontrib>Knopman, David</creatorcontrib><creatorcontrib>Kornak, John</creatorcontrib><creatorcontrib>Kramer, Joel</creatorcontrib><creatorcontrib>Kukull, Walter</creatorcontrib><creatorcontrib>Lucente, Diane</creatorcontrib><creatorcontrib>Lungu, Codrin</creatorcontrib><creatorcontrib>Mackenzie, Ian</creatorcontrib><creatorcontrib>Manoochehri, Masood</creatorcontrib><creatorcontrib>McGinnis, Scott</creatorcontrib><creatorcontrib>Miller, Bruce</creatorcontrib><creatorcontrib>Pearlman, Rodney</creatorcontrib><creatorcontrib>Petrucelli, Len</creatorcontrib><creatorcontrib>Potter, Madeline</creatorcontrib><creatorcontrib>Rademakers, Rosa</creatorcontrib><creatorcontrib>Ramos, Eliana Marisa</creatorcontrib><creatorcontrib>Rankin, Katherine</creatorcontrib><creatorcontrib>Rascovsky, Katya</creatorcontrib><creatorcontrib>Sengdy, Pheth</creatorcontrib><creatorcontrib>Shaw, Leslie</creatorcontrib><creatorcontrib>Tatton, Nadine</creatorcontrib><creatorcontrib>Taylor, Joanne</creatorcontrib><creatorcontrib>Toga, Arthur</creatorcontrib><creatorcontrib>Trojanowski, John</creatorcontrib><creatorcontrib>Weintraub, Sandra</creatorcontrib><creatorcontrib>Wong, Bonnie</creatorcontrib><creatorcontrib>Wszolek, Zbigniew</creatorcontrib><creatorcontrib>Boeve, Bradley F.</creatorcontrib><creatorcontrib>Boxer, Adam</creatorcontrib><creatorcontrib>Rosen, Howard</creatorcontrib><creatorcontrib>LEFFTDS Consortium</creatorcontrib><creatorcontrib>the LEFFTDS Consortium</creatorcontrib><title>Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort</title><title>Alzheimer's & dementia</title><addtitle>Alzheimers Dement</addtitle><description>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.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>C9orf72</subject><subject>Caregivers - psychology</subject><subject>Cohort Studies</subject><subject>Cost of Illness</subject><subject>Female</subject><subject>frontotemporal dementia</subject><subject>Frontotemporal Lobar Degeneration</subject><subject>GRN</subject><subject>Humans</subject><subject>Longitudinal Studies</subject><subject>Male</subject><subject>MAPT</subject><subject>Middle Aged</subject><subject>quality of life</subject><subject>Quality of Life - psychology</subject><subject>tau</subject><subject>TDP‐43</subject><subject>Young Adult</subject><issn>1552-5260</issn><issn>1552-5279</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2020</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp1kbtOwzAUhi0E4lIYeAHkEYYW24nThK0CCkiVEAIWlsh1jqmRYxfbAYXH4UkxFBALky__p-8c6Udon5IRJYQdC_M2ooxUfA1tU87ZkLNxtf57L8gW2gnhiZCclJRvoq2MFbyoGN1G7zedMDr22ClstAIsbIOl8PCoX8DjeecbsFhbrESrjRYGK-9sdBHapfPpadxceNzAI1jwImpnT_DECtMHCJ_S0LfL6NqUyC-3-PuhbaNfdJNWCPhVx0WaExeAZ-fT6d3ZLZZu4XzcRRsqAbD3fQ7Q_fT87vRyOLu-uDqdzIYyKwgfcgk541IQCpIVpWLAxqKk85xyWopxxlNYSWAZBVZRBiQr1JjmZcUhV42AbIAOV96ld88dhFi3OkgwRlhwXahZzjJO8yRK6NEKld6F4EHVS69b4fuakvqzkjpVUn9VktiDb203b6H5JX86SMDxCnjVBvr_TfVk9rBSfgAv5piS</recordid><startdate>202008</startdate><enddate>202008</enddate><creator>Gentry, Melanie T.</creator><creator>Lapid, Maria I.</creator><creator>Syrjanen, Jeremy</creator><creator>Calvert, Kendrick</creator><creator>Hughes, Samantha</creator><creator>Brushaber, Danielle</creator><creator>Kremers, Walter</creator><creator>Bove, Jessica</creator><creator>Brannelly, Patrick</creator><creator>Coppola, Giovanni</creator><creator>Dheel, Christina</creator><creator>Dickerson, Bradley</creator><creator>Dickinson, Susan</creator><creator>Faber, Kelley</creator><creator>Fields, Julie</creator><creator>Fong, Jamie</creator><creator>Foroud, Tatiana</creator><creator>Forsberg, Leah</creator><creator>Gavrilova, Ralitza</creator><creator>Gearhart, Deb</creator><creator>Ghoshal, Nupur</creator><creator>Goldman, Jill</creator><creator>Graff‐Radford, Jonathan</creator><creator>Graff‐Radford, Neill</creator><creator>Grossman, Murray</creator><creator>Haley, Dana</creator><creator>Heuer, Hilary</creator><creator>Hsiung, Ging‐Yuek</creator><creator>Huey, Edward</creator><creator>Irwin, David</creator><creator>Jones, David</creator><creator>Jones, Lynne</creator><creator>Kantarci, Kejal</creator><creator>Karydas, Anna</creator><creator>Knopman, David</creator><creator>Kornak, John</creator><creator>Kramer, Joel</creator><creator>Kukull, Walter</creator><creator>Lucente, Diane</creator><creator>Lungu, Codrin</creator><creator>Mackenzie, Ian</creator><creator>Manoochehri, Masood</creator><creator>McGinnis, Scott</creator><creator>Miller, Bruce</creator><creator>Pearlman, Rodney</creator><creator>Petrucelli, Len</creator><creator>Potter, Madeline</creator><creator>Rademakers, Rosa</creator><creator>Ramos, Eliana Marisa</creator><creator>Rankin, Katherine</creator><creator>Rascovsky, Katya</creator><creator>Sengdy, Pheth</creator><creator>Shaw, Leslie</creator><creator>Tatton, Nadine</creator><creator>Taylor, Joanne</creator><creator>Toga, Arthur</creator><creator>Trojanowski, John</creator><creator>Weintraub, Sandra</creator><creator>Wong, Bonnie</creator><creator>Wszolek, Zbigniew</creator><creator>Boeve, Bradley F.</creator><creator>Boxer, Adam</creator><creator>Rosen, Howard</creator><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope></search><sort><creationdate>202008</creationdate><title>Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort</title><author>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</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c3605-5ce425ca01ec268f2e27a81b41518a73525c9ce231e2912e036f714895e4fdae3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2020</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>C9orf72</topic><topic>Caregivers - psychology</topic><topic>Cohort Studies</topic><topic>Cost of Illness</topic><topic>Female</topic><topic>frontotemporal dementia</topic><topic>Frontotemporal Lobar Degeneration</topic><topic>GRN</topic><topic>Humans</topic><topic>Longitudinal Studies</topic><topic>Male</topic><topic>MAPT</topic><topic>Middle Aged</topic><topic>quality of life</topic><topic>Quality of Life - psychology</topic><topic>tau</topic><topic>TDP‐43</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Gentry, Melanie T.</creatorcontrib><creatorcontrib>Lapid, Maria I.</creatorcontrib><creatorcontrib>Syrjanen, Jeremy</creatorcontrib><creatorcontrib>Calvert, Kendrick</creatorcontrib><creatorcontrib>Hughes, Samantha</creatorcontrib><creatorcontrib>Brushaber, Danielle</creatorcontrib><creatorcontrib>Kremers, Walter</creatorcontrib><creatorcontrib>Bove, Jessica</creatorcontrib><creatorcontrib>Brannelly, Patrick</creatorcontrib><creatorcontrib>Coppola, 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David</creatorcontrib><creatorcontrib>Jones, David</creatorcontrib><creatorcontrib>Jones, Lynne</creatorcontrib><creatorcontrib>Kantarci, Kejal</creatorcontrib><creatorcontrib>Karydas, Anna</creatorcontrib><creatorcontrib>Knopman, David</creatorcontrib><creatorcontrib>Kornak, John</creatorcontrib><creatorcontrib>Kramer, Joel</creatorcontrib><creatorcontrib>Kukull, Walter</creatorcontrib><creatorcontrib>Lucente, Diane</creatorcontrib><creatorcontrib>Lungu, Codrin</creatorcontrib><creatorcontrib>Mackenzie, Ian</creatorcontrib><creatorcontrib>Manoochehri, Masood</creatorcontrib><creatorcontrib>McGinnis, Scott</creatorcontrib><creatorcontrib>Miller, Bruce</creatorcontrib><creatorcontrib>Pearlman, Rodney</creatorcontrib><creatorcontrib>Petrucelli, Len</creatorcontrib><creatorcontrib>Potter, Madeline</creatorcontrib><creatorcontrib>Rademakers, Rosa</creatorcontrib><creatorcontrib>Ramos, Eliana Marisa</creatorcontrib><creatorcontrib>Rankin, Katherine</creatorcontrib><creatorcontrib>Rascovsky, Katya</creatorcontrib><creatorcontrib>Sengdy, Pheth</creatorcontrib><creatorcontrib>Shaw, Leslie</creatorcontrib><creatorcontrib>Tatton, Nadine</creatorcontrib><creatorcontrib>Taylor, Joanne</creatorcontrib><creatorcontrib>Toga, Arthur</creatorcontrib><creatorcontrib>Trojanowski, John</creatorcontrib><creatorcontrib>Weintraub, Sandra</creatorcontrib><creatorcontrib>Wong, Bonnie</creatorcontrib><creatorcontrib>Wszolek, Zbigniew</creatorcontrib><creatorcontrib>Boeve, Bradley F.</creatorcontrib><creatorcontrib>Boxer, Adam</creatorcontrib><creatorcontrib>Rosen, Howard</creatorcontrib><creatorcontrib>LEFFTDS Consortium</creatorcontrib><creatorcontrib>the LEFFTDS Consortium</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Alzheimer's & dementia</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Gentry, Melanie T.</au><au>Lapid, Maria I.</au><au>Syrjanen, Jeremy</au><au>Calvert, Kendrick</au><au>Hughes, Samantha</au><au>Brushaber, Danielle</au><au>Kremers, Walter</au><au>Bove, Jessica</au><au>Brannelly, Patrick</au><au>Coppola, Giovanni</au><au>Dheel, Christina</au><au>Dickerson, Bradley</au><au>Dickinson, Susan</au><au>Faber, Kelley</au><au>Fields, Julie</au><au>Fong, Jamie</au><au>Foroud, Tatiana</au><au>Forsberg, Leah</au><au>Gavrilova, Ralitza</au><au>Gearhart, Deb</au><au>Ghoshal, Nupur</au><au>Goldman, Jill</au><au>Graff‐Radford, Jonathan</au><au>Graff‐Radford, Neill</au><au>Grossman, Murray</au><au>Haley, Dana</au><au>Heuer, Hilary</au><au>Hsiung, Ging‐Yuek</au><au>Huey, Edward</au><au>Irwin, David</au><au>Jones, David</au><au>Jones, Lynne</au><au>Kantarci, Kejal</au><au>Karydas, Anna</au><au>Knopman, David</au><au>Kornak, John</au><au>Kramer, Joel</au><au>Kukull, Walter</au><au>Lucente, Diane</au><au>Lungu, Codrin</au><au>Mackenzie, Ian</au><au>Manoochehri, Masood</au><au>McGinnis, Scott</au><au>Miller, Bruce</au><au>Pearlman, Rodney</au><au>Petrucelli, Len</au><au>Potter, Madeline</au><au>Rademakers, Rosa</au><au>Ramos, Eliana Marisa</au><au>Rankin, Katherine</au><au>Rascovsky, Katya</au><au>Sengdy, Pheth</au><au>Shaw, Leslie</au><au>Tatton, Nadine</au><au>Taylor, Joanne</au><au>Toga, Arthur</au><au>Trojanowski, John</au><au>Weintraub, Sandra</au><au>Wong, Bonnie</au><au>Wszolek, Zbigniew</au><au>Boeve, Bradley F.</au><au>Boxer, Adam</au><au>Rosen, Howard</au><aucorp>LEFFTDS Consortium</aucorp><aucorp>the LEFFTDS Consortium</aucorp><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Quality of life and caregiver burden in familial frontotemporal lobar degeneration: Analyses of symptomatic and asymptomatic individuals within the LEFFTDS cohort</atitle><jtitle>Alzheimer's & dementia</jtitle><addtitle>Alzheimers Dement</addtitle><date>2020-08</date><risdate>2020</risdate><volume>16</volume><issue>8</issue><spage>1115</spage><epage>1124</epage><pages>1115-1124</pages><issn>1552-5260</issn><eissn>1552-5279</eissn><abstract>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.</abstract><cop>United States</cop><pmid>32656921</pmid><doi>10.1002/alz.12095</doi><tpages>10</tpages><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1552-5260 |
| ispartof | Alzheimer's & dementia, 2020-08, Vol.16 (8), p.1115-1124 |
| issn | 1552-5260 1552-5279 |
| language | eng |
| recordid | cdi_proquest_miscellaneous_2423514352 |
| source | MEDLINE; Wiley Online Library Journals Frontfile Complete |
| subjects | Adolescent Adult Aged Aged, 80 and over C9orf72 Caregivers - psychology Cohort Studies Cost of Illness Female frontotemporal dementia Frontotemporal Lobar Degeneration GRN Humans Longitudinal Studies Male MAPT Middle Aged quality of life Quality of Life - psychology tau TDP‐43 Young Adult |
| title | 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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