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Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure
Purpose Health related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in...
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| Published in: | Quality of life research 2021-04, Vol.30 (4), p.1049-1059 |
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| container_end_page | 1059 |
| container_issue | 4 |
| container_start_page | 1049 |
| container_title | Quality of life research |
| container_volume | 30 |
| creator | Prichard, Roslyn A. Zhao, Fei-Li Mcdonagh, Julee Goodall, Stephen Davidson, Patricia M. Newton, Phillip J. Farr-Wharton, Ben Hayward, Christopher S. |
| description | Purpose
Health related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in patients with advanced heart failure and examines factors influencing discrepancies.
Methods
Seventy-five patients with heart failure, (22 females, 53 males) completed the EQ-5D-5L questionnaire. Thirty-nine clinicians (11 medical, 23 nursing, 5 allied health) completed the proxy version (V1) producing 194 dyads. Correlation was assessed using Spearman’s rank tests, systematic bias was examined with Bland–Altman analyses. Inter-rater agreement at the domain level, was investigated using linear weighted Kappa statistics while factors influencing the IRG were explored using independent student
t
-tests, analysis of variance and regression.
Results
There was a moderate positive correlation between clinician HRQoL estimates and patient reported utility (
r
= 0.38;
p
|
| doi_str_mv | 10.1007/s11136-020-02722-z |
| format | article |
| fullrecord | <record><control><sourceid>proquest_cross</sourceid><recordid>TN_cdi_proquest_miscellaneous_2474844197</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>2474844197</sourcerecordid><originalsourceid>FETCH-LOGICAL-c375t-b17f609e4b2be997bc0e4387a406928d2d5c34758486ecaf464f0d420179bca63</originalsourceid><addsrcrecordid>eNp9kc1O3DAUha2qqEyBF-iistQNi4b6L3HcXQX9QUJiU9aW49zMGHmcYDuiwwv1NethhiKxYGFZvj73u_Y5CH2g5IwSIr8kSilvKsJIWZKx6uENWtBa8oo1Qr1FC6IaViku-CF6n9ItIaRVhL1Dh5zzVjLFFujvhUs2wmSCdZBwB_keIOApjn82GFJ2a5NL3YQeTyY7CBkX9Rgz9J_xCozPq1Lw5vF8Nxvv8gaPA_ZugK947ULvwhLnFeClmZ7xe9QWa70LzjpTqhAtTNmNIWEXtvSY8WCcnyMco4PB-AQn-_0I3fz4_vv8V3V1_fPy_NtVZbmsc9VROTREgehYB0rJzhIQ5a9GkEaxtmd9bbmQdSvaBqwZRCMG0gtGqFSdNQ0_Qqc7bnHgbi4G6HUxCLw3AcY5aSakaIWgShbppxfS23GOobxOs5rUUqmW06JiO5WNY0oRBj3FYmrcaEr0Nka9i1GXGPVjjPqhNH3co-duDf3_lqfcioDvBKlchSXE59mvYP8B9uWrhA</addsrcrecordid><sourcetype>Aggregation Database</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>2505799831</pqid></control><display><type>article</type><title>Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure</title><source>ABI/INFORM Global</source><source>Springer Link</source><creator>Prichard, Roslyn A. ; Zhao, Fei-Li ; Mcdonagh, Julee ; Goodall, Stephen ; Davidson, Patricia M. ; Newton, Phillip J. ; Farr-Wharton, Ben ; Hayward, Christopher S.</creator><creatorcontrib>Prichard, Roslyn A. ; Zhao, Fei-Li ; Mcdonagh, Julee ; Goodall, Stephen ; Davidson, Patricia M. ; Newton, Phillip J. ; Farr-Wharton, Ben ; Hayward, Christopher S.</creatorcontrib><description>Purpose
Health related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in patients with advanced heart failure and examines factors influencing discrepancies.
Methods
Seventy-five patients with heart failure, (22 females, 53 males) completed the EQ-5D-5L questionnaire. Thirty-nine clinicians (11 medical, 23 nursing, 5 allied health) completed the proxy version (V1) producing 194 dyads. Correlation was assessed using Spearman’s rank tests, systematic bias was examined with Bland–Altman analyses. Inter-rater agreement at the domain level, was investigated using linear weighted Kappa statistics while factors influencing the IRG were explored using independent student
t
-tests, analysis of variance and regression.
Results
There was a moderate positive correlation between clinician HRQoL estimates and patient reported utility (
r
= 0.38;
p
< .0005). Mean clinician estimates were higher than patient reported utility (0.60 vs 0.54;
p
= 0.008), with significant underestimation of reported problems apparent in three of the five EQ-5D-5L domains. Patient sex (female), depressed mood and frailty were all associated with an increased inter-rater gap.
Conclusion
Clinicians in this sample overestimated HRQoL. Factors affecting the inter-rater gap, including sex and depression, support formal HRQoL screening to enhance clinical conversations and decision making. The discrepancy also supports regulatory restriction on the use of expert opinion in the development of QALYs in health economic analysis.</description><identifier>ISSN: 0962-9343</identifier><identifier>EISSN: 1573-2649</identifier><identifier>DOI: 10.1007/s11136-020-02722-z</identifier><identifier>PMID: 33387292</identifier><language>eng</language><publisher>Cham: Springer International Publishing</publisher><subject>Female ; Heart failure ; Heart Failure - epidemiology ; Humans ; Male ; Medicine ; Medicine & Public Health ; Middle Aged ; Patient Reported Outcome Measures ; Proxy - psychology ; Public Health ; Quality of life ; Quality of Life - psychology ; Quality of Life Research ; Sociology ; Surveys and Questionnaires</subject><ispartof>Quality of life research, 2021-04, Vol.30 (4), p.1049-1059</ispartof><rights>Springer Nature Switzerland AG 2021</rights><rights>Springer Nature Switzerland AG 2021.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c375t-b17f609e4b2be997bc0e4387a406928d2d5c34758486ecaf464f0d420179bca63</citedby><cites>FETCH-LOGICAL-c375t-b17f609e4b2be997bc0e4387a406928d2d5c34758486ecaf464f0d420179bca63</cites><orcidid>0000-0001-8057-6605</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.proquest.com/docview/2505799831/fulltextPDF?pq-origsite=primo$$EPDF$$P50$$Gproquest$$H</linktopdf><linktohtml>$$Uhttps://www.proquest.com/docview/2505799831?pq-origsite=primo$$EHTML$$P50$$Gproquest$$H</linktohtml><link.rule.ids>314,780,784,11688,27924,27925,36060,36061,44363,74895</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/33387292$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Prichard, Roslyn A.</creatorcontrib><creatorcontrib>Zhao, Fei-Li</creatorcontrib><creatorcontrib>Mcdonagh, Julee</creatorcontrib><creatorcontrib>Goodall, Stephen</creatorcontrib><creatorcontrib>Davidson, Patricia M.</creatorcontrib><creatorcontrib>Newton, Phillip J.</creatorcontrib><creatorcontrib>Farr-Wharton, Ben</creatorcontrib><creatorcontrib>Hayward, Christopher S.</creatorcontrib><title>Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure</title><title>Quality of life research</title><addtitle>Qual Life Res</addtitle><addtitle>Qual Life Res</addtitle><description>Purpose
Health related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in patients with advanced heart failure and examines factors influencing discrepancies.
Methods
Seventy-five patients with heart failure, (22 females, 53 males) completed the EQ-5D-5L questionnaire. Thirty-nine clinicians (11 medical, 23 nursing, 5 allied health) completed the proxy version (V1) producing 194 dyads. Correlation was assessed using Spearman’s rank tests, systematic bias was examined with Bland–Altman analyses. Inter-rater agreement at the domain level, was investigated using linear weighted Kappa statistics while factors influencing the IRG were explored using independent student
t
-tests, analysis of variance and regression.
Results
There was a moderate positive correlation between clinician HRQoL estimates and patient reported utility (
r
= 0.38;
p
< .0005). Mean clinician estimates were higher than patient reported utility (0.60 vs 0.54;
p
= 0.008), with significant underestimation of reported problems apparent in three of the five EQ-5D-5L domains. Patient sex (female), depressed mood and frailty were all associated with an increased inter-rater gap.
Conclusion
Clinicians in this sample overestimated HRQoL. Factors affecting the inter-rater gap, including sex and depression, support formal HRQoL screening to enhance clinical conversations and decision making. The discrepancy also supports regulatory restriction on the use of expert opinion in the development of QALYs in health economic analysis.</description><subject>Female</subject><subject>Heart failure</subject><subject>Heart Failure - epidemiology</subject><subject>Humans</subject><subject>Male</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Middle Aged</subject><subject>Patient Reported Outcome Measures</subject><subject>Proxy - psychology</subject><subject>Public Health</subject><subject>Quality of life</subject><subject>Quality of Life - psychology</subject><subject>Quality of Life Research</subject><subject>Sociology</subject><subject>Surveys and Questionnaires</subject><issn>0962-9343</issn><issn>1573-2649</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2021</creationdate><recordtype>article</recordtype><sourceid>M0C</sourceid><recordid>eNp9kc1O3DAUha2qqEyBF-iistQNi4b6L3HcXQX9QUJiU9aW49zMGHmcYDuiwwv1NethhiKxYGFZvj73u_Y5CH2g5IwSIr8kSilvKsJIWZKx6uENWtBa8oo1Qr1FC6IaViku-CF6n9ItIaRVhL1Dh5zzVjLFFujvhUs2wmSCdZBwB_keIOApjn82GFJ2a5NL3YQeTyY7CBkX9Rgz9J_xCozPq1Lw5vF8Nxvv8gaPA_ZugK947ULvwhLnFeClmZ7xe9QWa70LzjpTqhAtTNmNIWEXtvSY8WCcnyMco4PB-AQn-_0I3fz4_vv8V3V1_fPy_NtVZbmsc9VROTREgehYB0rJzhIQ5a9GkEaxtmd9bbmQdSvaBqwZRCMG0gtGqFSdNQ0_Qqc7bnHgbi4G6HUxCLw3AcY5aSakaIWgShbppxfS23GOobxOs5rUUqmW06JiO5WNY0oRBj3FYmrcaEr0Nka9i1GXGPVjjPqhNH3co-duDf3_lqfcioDvBKlchSXE59mvYP8B9uWrhA</recordid><startdate>20210401</startdate><enddate>20210401</enddate><creator>Prichard, Roslyn A.</creator><creator>Zhao, Fei-Li</creator><creator>Mcdonagh, Julee</creator><creator>Goodall, Stephen</creator><creator>Davidson, Patricia M.</creator><creator>Newton, Phillip J.</creator><creator>Farr-Wharton, Ben</creator><creator>Hayward, Christopher S.</creator><general>Springer International Publishing</general><general>Springer Nature B.V</general><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>3V.</scope><scope>7RV</scope><scope>7WY</scope><scope>7WZ</scope><scope>7X7</scope><scope>7XB</scope><scope>87Z</scope><scope>88E</scope><scope>88G</scope><scope>8AO</scope><scope>8C1</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>8FL</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>BEZIV</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FRNLG</scope><scope>FYUFA</scope><scope>F~G</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>K60</scope><scope>K6~</scope><scope>K9.</scope><scope>KB0</scope><scope>L.-</scope><scope>M0C</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>NAPCQ</scope><scope>PQBIZ</scope><scope>PQBZA</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0001-8057-6605</orcidid></search><sort><creationdate>20210401</creationdate><title>Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure</title><author>Prichard, Roslyn A. ; Zhao, Fei-Li ; Mcdonagh, Julee ; Goodall, Stephen ; Davidson, Patricia M. ; Newton, Phillip J. ; Farr-Wharton, Ben ; Hayward, Christopher S.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c375t-b17f609e4b2be997bc0e4387a406928d2d5c34758486ecaf464f0d420179bca63</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2021</creationdate><topic>Female</topic><topic>Heart failure</topic><topic>Heart Failure - epidemiology</topic><topic>Humans</topic><topic>Male</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Middle Aged</topic><topic>Patient Reported Outcome Measures</topic><topic>Proxy - psychology</topic><topic>Public Health</topic><topic>Quality of life</topic><topic>Quality of Life - psychology</topic><topic>Quality of Life Research</topic><topic>Sociology</topic><topic>Surveys and Questionnaires</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Prichard, Roslyn A.</creatorcontrib><creatorcontrib>Zhao, Fei-Li</creatorcontrib><creatorcontrib>Mcdonagh, Julee</creatorcontrib><creatorcontrib>Goodall, Stephen</creatorcontrib><creatorcontrib>Davidson, Patricia M.</creatorcontrib><creatorcontrib>Newton, Phillip J.</creatorcontrib><creatorcontrib>Farr-Wharton, Ben</creatorcontrib><creatorcontrib>Hayward, Christopher S.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Nursing & Allied Health Database</collection><collection>ABI/INFORM Collection (ProQuest)</collection><collection>ABI/INFORM Global (PDF only)</collection><collection>ProQuest Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>ABI/INFORM Global (Alumni Edition)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>ProQuest Pharma Collection</collection><collection>Public Health Database</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ABI/INFORM Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni)</collection><collection>ProQuest Central</collection><collection>ProQuest Central Essentials</collection><collection>AUTh Library subscriptions: ProQuest Central</collection><collection>Business Premium Collection</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Business Premium Collection (Alumni)</collection><collection>Health Research Premium Collection</collection><collection>ABI/INFORM Global (Corporate)</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>ProQuest Business Collection (Alumni Edition)</collection><collection>ProQuest Business Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>ABI/INFORM Professional Advanced</collection><collection>ABI/INFORM Global</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>PML(ProQuest Medical Library)</collection><collection>Psychology Database</collection><collection>Nursing & Allied Health Premium</collection><collection>ProQuest One Business</collection><collection>ProQuest One Business (Alumni)</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>MEDLINE - Academic</collection><jtitle>Quality of life research</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Prichard, Roslyn A.</au><au>Zhao, Fei-Li</au><au>Mcdonagh, Julee</au><au>Goodall, Stephen</au><au>Davidson, Patricia M.</au><au>Newton, Phillip J.</au><au>Farr-Wharton, Ben</au><au>Hayward, Christopher S.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure</atitle><jtitle>Quality of life research</jtitle><stitle>Qual Life Res</stitle><addtitle>Qual Life Res</addtitle><date>2021-04-01</date><risdate>2021</risdate><volume>30</volume><issue>4</issue><spage>1049</spage><epage>1059</epage><pages>1049-1059</pages><issn>0962-9343</issn><eissn>1573-2649</eissn><abstract>Purpose
Health related quality of life (HRQoL) is rarely routinely measured in the clinical setting. In the absence of patient reported data, clinicians rely on proxy and informal estimates to support clinical decisions. This study compares clinician estimates (proxy) with patient reported HRQoL in patients with advanced heart failure and examines factors influencing discrepancies.
Methods
Seventy-five patients with heart failure, (22 females, 53 males) completed the EQ-5D-5L questionnaire. Thirty-nine clinicians (11 medical, 23 nursing, 5 allied health) completed the proxy version (V1) producing 194 dyads. Correlation was assessed using Spearman’s rank tests, systematic bias was examined with Bland–Altman analyses. Inter-rater agreement at the domain level, was investigated using linear weighted Kappa statistics while factors influencing the IRG were explored using independent student
t
-tests, analysis of variance and regression.
Results
There was a moderate positive correlation between clinician HRQoL estimates and patient reported utility (
r
= 0.38;
p
< .0005). Mean clinician estimates were higher than patient reported utility (0.60 vs 0.54;
p
= 0.008), with significant underestimation of reported problems apparent in three of the five EQ-5D-5L domains. Patient sex (female), depressed mood and frailty were all associated with an increased inter-rater gap.
Conclusion
Clinicians in this sample overestimated HRQoL. Factors affecting the inter-rater gap, including sex and depression, support formal HRQoL screening to enhance clinical conversations and decision making. The discrepancy also supports regulatory restriction on the use of expert opinion in the development of QALYs in health economic analysis.</abstract><cop>Cham</cop><pub>Springer International Publishing</pub><pmid>33387292</pmid><doi>10.1007/s11136-020-02722-z</doi><tpages>11</tpages><orcidid>https://orcid.org/0000-0001-8057-6605</orcidid></addata></record> |
| fulltext | fulltext |
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| ispartof | Quality of life research, 2021-04, Vol.30 (4), p.1049-1059 |
| issn | 0962-9343 1573-2649 |
| language | eng |
| recordid | cdi_proquest_miscellaneous_2474844197 |
| source | ABI/INFORM Global; Springer Link |
| subjects | Female Heart failure Heart Failure - epidemiology Humans Male Medicine Medicine & Public Health Middle Aged Patient Reported Outcome Measures Proxy - psychology Public Health Quality of life Quality of Life - psychology Quality of Life Research Sociology Surveys and Questionnaires |
| title | Discrepancies between proxy estimates and patient reported, health related, quality of life: minding the gap between patient and clinician perceptions in heart failure |
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