Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: secondary analysis of RightTimePlaceCare data.
Identifieur interne : 000900 ( Main/Exploration ); précédent : 000899; suivant : 000901Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: secondary analysis of RightTimePlaceCare data.
Auteurs : Josephine Römhild [Allemagne] ; Steffen Fleischer [Allemagne] ; Gabriele Meyer [Allemagne] ; Astrid Stephan [Allemagne] ; Sandra Zwakhalen [Pays-Bas] ; Helena Leino-Kilpi [Finlande] ; Adelaida Zabalegui [Espagne] ; Kai Saks [Estonie] ; Maria Soto-Martin [France] ; Caroline Sutcliffe [Royaume-Uni] ; Ingalill Rahm Hallberg [Suède] ; Almuth Berg [Allemagne]Source :
- Health and quality of life outcomes [ 1477-7525 ] ; 2018.
Descripteurs français
- KwdFr :
- Aidants (psychologie), Autorapport (MeSH), Enquêtes et questionnaires (normes), Femelle (MeSH), Humains (MeSH), Maladie d'Alzheimer (psychologie), Mandataire (psychologie), Mâle (MeSH), Qualité de vie (psychologie), Services de soins à domicile (MeSH), Sujet âgé (MeSH), Sujet âgé de 80 ans ou plus (MeSH), Études transversales (MeSH).
- MESH :
- normes : Enquêtes et questionnaires.
- psychologie : Aidants, Maladie d'Alzheimer, Mandataire, Qualité de vie.
- Autorapport, Femelle, Humains, Mâle, Services de soins à domicile, Sujet âgé, Sujet âgé de 80 ans ou plus, Études transversales.
English descriptors
- KwdEn :
- Aged (MeSH), Aged, 80 and over (MeSH), Alzheimer Disease (psychology), Caregivers (psychology), Cross-Sectional Studies (MeSH), Female (MeSH), Home Care Services (MeSH), Humans (MeSH), Male (MeSH), Proxy (psychology), Quality of Life (psychology), Self Report (MeSH), Surveys and Questionnaires (standards).
- MESH :
- psychology : Alzheimer Disease, Caregivers, Proxy, Quality of Life.
- standards : Surveys and Questionnaires.
- Aged, Aged, 80 and over, Cross-Sectional Studies, Female, Home Care Services, Humans, Male, Self Report.
Abstract
BACKGROUND
To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement.
METHODS
Cross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis.
RESULTS
The overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings.
CONCLUSIONS
Proxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.
DOI: 10.1186/s12955-018-0959-y
PubMed: 29954384
PubMed Central: PMC6022444
Affiliations:
- Allemagne, Espagne, Estonie, Finlande, France, Pays-Bas, Royaume-Uni, Suède
- Angleterre, Catalogne, Finlande occidentale, Grand Manchester, Midi-Pyrénées, Occitanie (région administrative)
- Barcelone, Manchester, Toulouse, Turku
- Université de Manchester
Links toward previous steps (curation, corpus...)
Le document en format XML
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wicri:level="3"><nlm:affiliation>Department of Nursing Science, Faculty of Medicine, University of Turku and Turku University Hospital, Turku, Finland.</nlm:affiliation><country xml:lang="fr">Finlande</country><wicri:regionArea>Department of Nursing Science, Faculty of Medicine, University of Turku and Turku University Hospital, Turku</wicri:regionArea><placeName><settlement type="city">Turku</settlement><region type="région" nuts="2">Finlande occidentale</region></placeName></affiliation></author><author><name sortKey="Zabalegui, Adelaida" sort="Zabalegui, Adelaida" uniqKey="Zabalegui A" first="Adelaida" last="Zabalegui">Adelaida Zabalegui</name><affiliation wicri:level="3"><nlm:affiliation>Hospital Clinic of Barcelona, Barcelona, Spain.</nlm:affiliation><country xml:lang="fr">Espagne</country><wicri:regionArea>Hospital Clinic of Barcelona, Barcelona</wicri:regionArea><placeName><settlement type="city">Barcelone</settlement><region nuts="2" type="region">Catalogne</region></placeName></affiliation></author><author><name sortKey="Saks, Kai" sort="Saks, Kai" uniqKey="Saks K" first="Kai" last="Saks">Kai Saks</name><affiliation wicri:level="1"><nlm:affiliation>Department of Internal Medicine, Faculty of Medicine, University of Tartu, Tartu, Estonia.</nlm:affiliation><country xml:lang="fr">Estonie</country><wicri:regionArea>Department of Internal Medicine, Faculty of Medicine, University of Tartu, Tartu</wicri:regionArea><wicri:noRegion>Tartu</wicri:noRegion></affiliation></author><author><name sortKey="Soto Martin, Maria" sort="Soto Martin, Maria" uniqKey="Soto Martin M" first="Maria" last="Soto-Martin">Maria Soto-Martin</name><affiliation wicri:level="3"><nlm:affiliation>Geriatrics Department, Gerontôpole, Toulouse University Hospital, INSERM UMR 1027, Toulouse, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Geriatrics Department, Gerontôpole, Toulouse University Hospital, INSERM UMR 1027, Toulouse</wicri:regionArea><placeName><region type="region">Occitanie (région administrative)</region><region type="old region">Midi-Pyrénées</region><settlement type="city">Toulouse</settlement></placeName></affiliation></author><author><name sortKey="Sutcliffe, Caroline" sort="Sutcliffe, Caroline" uniqKey="Sutcliffe C" first="Caroline" last="Sutcliffe">Caroline Sutcliffe</name><affiliation wicri:level="4"><nlm:affiliation>School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester</wicri:regionArea><placeName><settlement type="city">Manchester</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Manchester</region></placeName><orgName type="university">Université de Manchester</orgName></affiliation></author><author><name sortKey="Rahm Hallberg, Ingalill" sort="Rahm Hallberg, Ingalill" uniqKey="Rahm Hallberg I" first="Ingalill" last="Rahm Hallberg">Ingalill Rahm Hallberg</name><affiliation wicri:level="1"><nlm:affiliation>Department of Health Sciences, Medical Faculty, Lund University, Lund, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Health Sciences, Medical Faculty, Lund University, Lund</wicri:regionArea><wicri:noRegion>Lund</wicri:noRegion></affiliation></author><author><name sortKey="Berg, Almuth" sort="Berg, Almuth" uniqKey="Berg A" first="Almuth" last="Berg">Almuth Berg</name><affiliation wicri:level="1"><nlm:affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany. almuth.berg@medizin.uni-halle.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle</wicri:regionArea><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2018">2018</date><idno type="RBID">pubmed:29954384</idno><idno type="pmid">29954384</idno><idno type="doi">10.1186/s12955-018-0959-y</idno><idno type="pmc">PMC6022444</idno><idno type="wicri:Area/Main/Corpus">000800</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Corpus" wicri:corpus="PubMed">000800</idno><idno type="wicri:Area/Main/Curation">000800</idno><idno type="wicri:explorRef" wicri:stream="Main" wicri:step="Curation">000800</idno><idno type="wicri:Area/Main/Exploration">000800</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: secondary analysis of RightTimePlaceCare data.</title><author><name sortKey="Romhild, Josephine" sort="Romhild, Josephine" uniqKey="Romhild J" first="Josephine" last="Römhild">Josephine Römhild</name><affiliation wicri:level="1"><nlm:affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle</wicri:regionArea><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion></affiliation><affiliation wicri:level="1"><nlm:affiliation>Institute of General Practice and Family Medicine, Jena University Hospital, Jena, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Institute of General Practice and Family Medicine, Jena University Hospital, Jena</wicri:regionArea><wicri:noRegion>Jena</wicri:noRegion><wicri:noRegion>Jena</wicri:noRegion><wicri:noRegion>Jena</wicri:noRegion></affiliation></author><author><name sortKey="Fleischer, Steffen" sort="Fleischer, Steffen" uniqKey="Fleischer S" first="Steffen" last="Fleischer">Steffen Fleischer</name><affiliation wicri:level="1"><nlm:affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle</wicri:regionArea><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion></affiliation></author><author><name sortKey="Meyer, Gabriele" sort="Meyer, Gabriele" uniqKey="Meyer G" first="Gabriele" last="Meyer">Gabriele Meyer</name><affiliation wicri:level="1"><nlm:affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle</wicri:regionArea><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion></affiliation><affiliation wicri:level="1"><nlm:affiliation>School of Nursing Science, Witten/Herdecke University, Witten, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>School of Nursing Science, Witten/Herdecke University, Witten</wicri:regionArea><wicri:noRegion>Witten</wicri:noRegion><wicri:noRegion>Witten</wicri:noRegion><wicri:noRegion>Witten</wicri:noRegion></affiliation></author><author><name sortKey="Stephan, Astrid" sort="Stephan, Astrid" uniqKey="Stephan A" first="Astrid" last="Stephan">Astrid Stephan</name><affiliation wicri:level="1"><nlm:affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle</wicri:regionArea><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion></affiliation><affiliation wicri:level="1"><nlm:affiliation>School of Nursing Science, Witten/Herdecke University, Witten, Germany.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>School of Nursing Science, Witten/Herdecke University, Witten</wicri:regionArea><wicri:noRegion>Witten</wicri:noRegion><wicri:noRegion>Witten</wicri:noRegion><wicri:noRegion>Witten</wicri:noRegion></affiliation></author><author><name sortKey="Zwakhalen, Sandra" sort="Zwakhalen, Sandra" uniqKey="Zwakhalen S" first="Sandra" last="Zwakhalen">Sandra Zwakhalen</name><affiliation wicri:level="1"><nlm:affiliation>Department of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, Netherlands.</nlm:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Department of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht</wicri:regionArea><wicri:noRegion>Maastricht</wicri:noRegion></affiliation></author><author><name sortKey="Leino Kilpi, Helena" sort="Leino Kilpi, Helena" uniqKey="Leino Kilpi H" first="Helena" last="Leino-Kilpi">Helena Leino-Kilpi</name><affiliation wicri:level="3"><nlm:affiliation>Department of Nursing Science, Faculty of Medicine, University of Turku and Turku University Hospital, Turku, Finland.</nlm:affiliation><country xml:lang="fr">Finlande</country><wicri:regionArea>Department of Nursing Science, Faculty of Medicine, University of Turku and Turku University Hospital, Turku</wicri:regionArea><placeName><settlement type="city">Turku</settlement><region type="région" nuts="2">Finlande occidentale</region></placeName></affiliation></author><author><name sortKey="Zabalegui, Adelaida" sort="Zabalegui, Adelaida" uniqKey="Zabalegui A" first="Adelaida" last="Zabalegui">Adelaida Zabalegui</name><affiliation wicri:level="3"><nlm:affiliation>Hospital Clinic of Barcelona, Barcelona, Spain.</nlm:affiliation><country xml:lang="fr">Espagne</country><wicri:regionArea>Hospital Clinic of Barcelona, Barcelona</wicri:regionArea><placeName><settlement type="city">Barcelone</settlement><region nuts="2" type="region">Catalogne</region></placeName></affiliation></author><author><name sortKey="Saks, Kai" sort="Saks, Kai" uniqKey="Saks K" first="Kai" last="Saks">Kai Saks</name><affiliation wicri:level="1"><nlm:affiliation>Department of Internal Medicine, Faculty of Medicine, University of Tartu, Tartu, Estonia.</nlm:affiliation><country xml:lang="fr">Estonie</country><wicri:regionArea>Department of Internal Medicine, Faculty of Medicine, University of Tartu, Tartu</wicri:regionArea><wicri:noRegion>Tartu</wicri:noRegion></affiliation></author><author><name sortKey="Soto Martin, Maria" sort="Soto Martin, Maria" uniqKey="Soto Martin M" first="Maria" last="Soto-Martin">Maria Soto-Martin</name><affiliation wicri:level="3"><nlm:affiliation>Geriatrics Department, Gerontôpole, Toulouse University Hospital, INSERM UMR 1027, Toulouse, France.</nlm:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Geriatrics Department, Gerontôpole, Toulouse University Hospital, INSERM UMR 1027, Toulouse</wicri:regionArea><placeName><region type="region">Occitanie (région administrative)</region><region type="old region">Midi-Pyrénées</region><settlement type="city">Toulouse</settlement></placeName></affiliation></author><author><name sortKey="Sutcliffe, Caroline" sort="Sutcliffe, Caroline" uniqKey="Sutcliffe C" first="Caroline" last="Sutcliffe">Caroline Sutcliffe</name><affiliation wicri:level="4"><nlm:affiliation>School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester</wicri:regionArea><placeName><settlement type="city">Manchester</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Manchester</region></placeName><orgName type="university">Université de Manchester</orgName></affiliation></author><author><name sortKey="Rahm Hallberg, Ingalill" sort="Rahm Hallberg, Ingalill" uniqKey="Rahm Hallberg I" first="Ingalill" last="Rahm Hallberg">Ingalill Rahm Hallberg</name><affiliation wicri:level="1"><nlm:affiliation>Department of Health Sciences, Medical Faculty, Lund University, Lund, Sweden.</nlm:affiliation><country xml:lang="fr">Suède</country><wicri:regionArea>Department of Health Sciences, Medical Faculty, Lund University, Lund</wicri:regionArea><wicri:noRegion>Lund</wicri:noRegion></affiliation></author><author><name sortKey="Berg, Almuth" sort="Berg, Almuth" uniqKey="Berg A" first="Almuth" last="Berg">Almuth Berg</name><affiliation wicri:level="1"><nlm:affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany. almuth.berg@medizin.uni-halle.de.</nlm:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle</wicri:regionArea><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion><wicri:noRegion>Halle</wicri:noRegion></affiliation></author></analytic><series><title level="j">Health and quality of life outcomes</title><idno type="eISSN">1477-7525</idno><imprint><date when="2018" type="published">2018</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Aged (MeSH)</term><term>Aged, 80 and over (MeSH)</term><term>Alzheimer Disease (psychology)</term><term>Caregivers (psychology)</term><term>Cross-Sectional Studies (MeSH)</term><term>Female (MeSH)</term><term>Home Care Services (MeSH)</term><term>Humans (MeSH)</term><term>Male (MeSH)</term><term>Proxy (psychology)</term><term>Quality of Life (psychology)</term><term>Self Report (MeSH)</term><term>Surveys and Questionnaires (standards)</term></keywords><keywords scheme="KwdFr" xml:lang="fr"><term>Aidants (psychologie)</term><term>Autorapport (MeSH)</term><term>Enquêtes et questionnaires (normes)</term><term>Femelle (MeSH)</term><term>Humains (MeSH)</term><term>Maladie d'Alzheimer (psychologie)</term><term>Mandataire (psychologie)</term><term>Mâle (MeSH)</term><term>Qualité de vie (psychologie)</term><term>Services de soins à domicile (MeSH)</term><term>Sujet âgé (MeSH)</term><term>Sujet âgé de 80 ans ou plus (MeSH)</term><term>Études transversales (MeSH)</term></keywords><keywords scheme="MESH" qualifier="normes" xml:lang="fr"><term>Enquêtes et questionnaires</term></keywords><keywords scheme="MESH" qualifier="psychologie" xml:lang="fr"><term>Aidants</term><term>Maladie d'Alzheimer</term><term>Mandataire</term><term>Qualité de vie</term></keywords><keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Alzheimer Disease</term><term>Caregivers</term><term>Proxy</term><term>Quality of Life</term></keywords><keywords scheme="MESH" qualifier="standards" xml:lang="en"><term>Surveys and Questionnaires</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Aged</term><term>Aged, 80 and over</term><term>Cross-Sectional Studies</term><term>Female</term><term>Home Care Services</term><term>Humans</term><term>Male</term><term>Self Report</term></keywords><keywords scheme="MESH" xml:lang="fr"><term>Autorapport</term><term>Femelle</term><term>Humains</term><term>Mâle</term><term>Services de soins à domicile</term><term>Sujet âgé</term><term>Sujet âgé de 80 ans ou plus</term><term>Études transversales</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><p><b>BACKGROUND</b></p><p>To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement.</p></div><div type="abstract" xml:lang="en"><p><b>METHODS</b></p><p>Cross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis.</p></div><div type="abstract" xml:lang="en"><p><b>RESULTS</b></p><p>The overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings.</p></div><div type="abstract" xml:lang="en"><p><b>CONCLUSIONS</b></p><p>Proxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.</p></div></front></TEI><pubmed><MedlineCitation Status="MEDLINE" IndexingMethod="Curated" Owner="NLM"><PMID Version="1">29954384</PMID><DateCompleted><Year>2018</Year><Month>10</Month><Day>16</Day></DateCompleted><DateRevised><Year>2019</Year><Month>12</Month><Day>10</Day></DateRevised><Article PubModel="Electronic"><Journal><ISSN IssnType="Electronic">1477-7525</ISSN><JournalIssue CitedMedium="Internet"><Volume>16</Volume><Issue>1</Issue><PubDate><Year>2018</Year><Month>Jun</Month><Day>28</Day></PubDate></JournalIssue><Title>Health and quality of life outcomes</Title><ISOAbbreviation>Health Qual Life Outcomes</ISOAbbreviation></Journal><ArticleTitle>Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: secondary analysis of RightTimePlaceCare data.</ArticleTitle><Pagination><MedlinePgn>131</MedlinePgn></Pagination><ELocationID EIdType="doi" ValidYN="Y">10.1186/s12955-018-0959-y</ELocationID><Abstract><AbstractText Label="BACKGROUND" NlmCategory="BACKGROUND">To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement.</AbstractText><AbstractText Label="METHODS" NlmCategory="METHODS">Cross-sectional QoL-AD data from the 7th Framework European RightTimePlaceCare study were analysed. A total of 1330 cases were included: n = 854 receiving home care and n = 476 receiving institutional long-term nursing care. The proxy raters were informal carers (home care) and best-informed professional carers (institutional long-term nursing care). Inter-rater agreement was investigated using Bland-Altman plots for the QoL-AD total score and by weighted kappa statistics for single items. Associations were investigated by regression analysis.</AbstractText><AbstractText Label="RESULTS" NlmCategory="RESULTS">The overall QoL-AD assessment of those with dementia revealed a mean value of 33.2 points, and the proxy ratings revealed a mean value of 29.8 points. The Bland-Altman plots revealed a poor agreement between self- and proxy ratings for the overall sample and for both care settings. With one exception (item 'Marriage' weighted kappa 0.26), the weighted kappa values for the single QoL-AD items were below 0.20, indicating poor agreement. Home care setting, dementia-related behavioural and psychological symptoms, and the functional status of the person with dementia, along with the caregiver burden, were associated with the level of agreement. Only the home care setting was associated with an increase larger than the predefined acceptable difference between self- and proxy ratings.</AbstractText><AbstractText Label="CONCLUSIONS" NlmCategory="CONCLUSIONS">Proxy quality of life ratings from professional and informal carers appear to be lower than the self-ratings of those with dementia. QoL-AD-SR and QoL-AD-PR are therefore not interchangeable, as the inter-rater agreement differs distinctly. Thus, a proxy rating should be judged as a complementary perspective for a self-assessment of quality of life by those with dementia, rather than as a valid substitute.</AbstractText></Abstract><AuthorList CompleteYN="Y"><Author ValidYN="Y"><LastName>Römhild</LastName><ForeName>Josephine</ForeName><Initials>J</Initials><AffiliationInfo><Affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>Institute of General Practice and Family Medicine, Jena University Hospital, Jena, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Fleischer</LastName><ForeName>Steffen</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Meyer</LastName><ForeName>Gabriele</ForeName><Initials>G</Initials><AffiliationInfo><Affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>School of Nursing Science, Witten/Herdecke University, Witten, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Stephan</LastName><ForeName>Astrid</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany.</Affiliation></AffiliationInfo><AffiliationInfo><Affiliation>School of Nursing Science, Witten/Herdecke University, Witten, Germany.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Zwakhalen</LastName><ForeName>Sandra</ForeName><Initials>S</Initials><AffiliationInfo><Affiliation>Department of Health Services Research, Care and Public Health Research Institute (CAPHRI), Maastricht University, Maastricht, Netherlands.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Leino-Kilpi</LastName><ForeName>Helena</ForeName><Initials>H</Initials><AffiliationInfo><Affiliation>Department of Nursing Science, Faculty of Medicine, University of Turku and Turku University Hospital, Turku, Finland.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Zabalegui</LastName><ForeName>Adelaida</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Hospital Clinic of Barcelona, Barcelona, Spain.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Saks</LastName><ForeName>Kai</ForeName><Initials>K</Initials><AffiliationInfo><Affiliation>Department of Internal Medicine, Faculty of Medicine, University of Tartu, Tartu, Estonia.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Soto-Martin</LastName><ForeName>Maria</ForeName><Initials>M</Initials><AffiliationInfo><Affiliation>Geriatrics Department, Gerontôpole, Toulouse University Hospital, INSERM UMR 1027, Toulouse, France.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Sutcliffe</LastName><ForeName>Caroline</ForeName><Initials>C</Initials><AffiliationInfo><Affiliation>School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Rahm Hallberg</LastName><ForeName>Ingalill</ForeName><Initials>I</Initials><AffiliationInfo><Affiliation>Department of Health Sciences, Medical Faculty, Lund University, Lund, Sweden.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><LastName>Berg</LastName><ForeName>Almuth</ForeName><Initials>A</Initials><AffiliationInfo><Affiliation>Institute of Health and Nursing Science, Medical Faculty, Martin Luther University Halle-Wittenberg, Halle, Germany. almuth.berg@medizin.uni-halle.de.</Affiliation></AffiliationInfo></Author><Author ValidYN="Y"><CollectiveName>RightTimePlaceCare Consortium</CollectiveName></Author></AuthorList><Language>eng</Language><PublicationTypeList><PublicationType UI="D023362">Evaluation Study</PublicationType><PublicationType UI="D016428">Journal Article</PublicationType></PublicationTypeList><ArticleDate DateType="Electronic"><Year>2018</Year><Month>06</Month><Day>28</Day></ArticleDate></Article><MedlineJournalInfo><Country>England</Country><MedlineTA>Health Qual Life Outcomes</MedlineTA><NlmUniqueID>101153626</NlmUniqueID><ISSNLinking>1477-7525</ISSNLinking></MedlineJournalInfo><CitationSubset>IM</CitationSubset><MeshHeadingList><MeshHeading><DescriptorName UI="D000368" MajorTopicYN="N">Aged</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D000369" MajorTopicYN="N">Aged, 80 and over</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D000544" MajorTopicYN="N">Alzheimer Disease</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="Y">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D017028" MajorTopicYN="N">Caregivers</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="N">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D003430" MajorTopicYN="N">Cross-Sectional Studies</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D005260" MajorTopicYN="N">Female</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D006699" MajorTopicYN="N">Home Care Services</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D006801" MajorTopicYN="N">Humans</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D008297" MajorTopicYN="N">Male</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D019727" MajorTopicYN="N">Proxy</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="Y">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D011788" MajorTopicYN="N">Quality of Life</DescriptorName><QualifierName UI="Q000523" MajorTopicYN="Y">psychology</QualifierName></MeshHeading><MeshHeading><DescriptorName UI="D057566" MajorTopicYN="N">Self Report</DescriptorName></MeshHeading><MeshHeading><DescriptorName UI="D011795" MajorTopicYN="N">Surveys and Questionnaires</DescriptorName><QualifierName UI="Q000592" MajorTopicYN="Y">standards</QualifierName></MeshHeading></MeshHeadingList><KeywordList Owner="NOTNLM"><Keyword MajorTopicYN="N">Dementia</Keyword><Keyword MajorTopicYN="N">Inter-rater agreement</Keyword><Keyword MajorTopicYN="N">Psychometrics</Keyword><Keyword MajorTopicYN="N">Quality of life</Keyword><Keyword MajorTopicYN="N">Reliability</Keyword></KeywordList></MedlineCitation><PubmedData><History><PubMedPubDate PubStatus="received"><Year>2017</Year><Month>12</Month><Day>15</Day></PubMedPubDate><PubMedPubDate 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