Are we missing the Institute of Medicine's mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care
The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients' values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information,...
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description | The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients' values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support-relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures.
Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation.
Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was "information, communication and education" (19 measures). In contrast, only five measures assessed the "involvement of family and friends." Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability.
There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptabl |
doi_str_mv | 10.1186/1471-2407-14-41 |
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Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation.
Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was "information, communication and education" (19 measures). In contrast, only five measures assessed the "involvement of family and friends." Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability.
There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted.</description><identifier>ISSN: 1471-2407</identifier><identifier>EISSN: 1471-2407</identifier><identifier>DOI: 10.1186/1471-2407-14-41</identifier><identifier>PMID: 24460829</identifier><language>eng</language><publisher>England: BioMed Central</publisher><subject>Cancer ; Delivery of Health Care, Integrated - standards ; Efficiency ; Guideline Adherence - standards ; Health behavior ; Health care ; Humans ; Medical Oncology - standards ; National Academies of Science, Engineering, and Medicine (U.S.) Health and Medicine Division ; Neoplasms - therapy ; Outcome and Process Assessment (Health Care) - standards ; Patients ; Practice Guidelines as Topic - standards ; Practice Patterns, Physicians' - standards ; Psychometrics ; Quality Indicators, Health Care - standards ; Quality of life ; Reproducibility of Results ; Studies ; Surveys and Questionnaires - standards ; Treatment Outcome ; United States ; Validity</subject><ispartof>BMC cancer, 2014-01, Vol.14 (1), p.41-41, Article 41</ispartof><rights>2014 Tzelepis et al.; licensee BioMed Central Ltd. This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.</rights><rights>Copyright © 2014 Tzelepis et al.; licensee BioMed Central Ltd. 2014 Tzelepis et al.; licensee BioMed Central Ltd.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-b480t-705a7ad3956aeba0b6ba6dd2a668c6571ef5be657869cdb601a30fd01e8f42eb3</citedby><cites>FETCH-LOGICAL-b480t-705a7ad3956aeba0b6ba6dd2a668c6571ef5be657869cdb601a30fd01e8f42eb3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3917413/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC3917413/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,864,885,27924,27925,53791,53793</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/24460829$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Tzelepis, Flora</creatorcontrib><creatorcontrib>Rose, Shiho K</creatorcontrib><creatorcontrib>Sanson-Fisher, Robert W</creatorcontrib><creatorcontrib>Clinton-McHarg, Tara</creatorcontrib><creatorcontrib>Carey, Mariko L</creatorcontrib><creatorcontrib>Paul, Christine L</creatorcontrib><title>Are we missing the Institute of Medicine's mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care</title><title>BMC cancer</title><addtitle>BMC Cancer</addtitle><description>The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients' values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support-relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures.
Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation.
Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was "information, communication and education" (19 measures). In contrast, only five measures assessed the "involvement of family and friends." Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability.
There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted.</description><subject>Cancer</subject><subject>Delivery of Health Care, Integrated - standards</subject><subject>Efficiency</subject><subject>Guideline Adherence - standards</subject><subject>Health behavior</subject><subject>Health care</subject><subject>Humans</subject><subject>Medical Oncology - standards</subject><subject>National Academies of Science, Engineering, and Medicine (U.S.) Health and Medicine Division</subject><subject>Neoplasms - therapy</subject><subject>Outcome and Process Assessment (Health Care) - standards</subject><subject>Patients</subject><subject>Practice Guidelines as Topic - standards</subject><subject>Practice Patterns, Physicians' - standards</subject><subject>Psychometrics</subject><subject>Quality Indicators, Health Care - standards</subject><subject>Quality of life</subject><subject>Reproducibility of Results</subject><subject>Studies</subject><subject>Surveys and Questionnaires - standards</subject><subject>Treatment Outcome</subject><subject>United States</subject><subject>Validity</subject><issn>1471-2407</issn><issn>1471-2407</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><recordid>eNp1kk1P3DAQhi1EBXTLmVtliUN7SbETx0kuVFvUDySqXtqzZTsTME3ixeOA9q_019bp0tVSlYtn7Hnm9XjGhJxw9o7zWp5xUfEsF6zKuMgE3yNH25P9Hf-QvES8ZYxXNasPyGEuhGR13hyRX8sA9AHo4BDdeE3jDdDLEaOLUwTqO_oVWmfdCG-QDjr8fE-XFNcYYdDRWRrg3sHDzK3SHsaYBVj5EKGlforWD0kZNE4BkGpE2FxyN-nexfVumk1LSFlWjxZCMgFekRed7hGOH-2C_Pj08fvFl-zq2-fLi-VVZkTNYlaxUle6LZpSajCaGWm0bNtcS1lbWVYcutJAcmrZ2NZIxnXBupZxqDuRgykW5Hyju5rMAO2fSnSvVsGlB6-V1049jYzuRl37e1U0vBK8SAIfNgLG-WcEnkZSX9Q8GzXPJnkqqSzI28cqgr-bAKNKI7HQ93oEP2GimoaLUuRNQk__QW_9FMbUo5mSOc8rXibqbEPZ4BEDdNuCOFPz5_lPCa93G7Hl__6W4jdCYcQO</recordid><startdate>20140125</startdate><enddate>20140125</enddate><creator>Tzelepis, Flora</creator><creator>Rose, Shiho K</creator><creator>Sanson-Fisher, Robert W</creator><creator>Clinton-McHarg, Tara</creator><creator>Carey, Mariko L</creator><creator>Paul, Christine L</creator><general>BioMed Central</general><general>BioMed Central Ltd</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>7TO</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>H94</scope><scope>K9.</scope><scope>M0S</scope><scope>M1P</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20140125</creationdate><title>Are we missing the Institute of Medicine's mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care</title><author>Tzelepis, Flora ; Rose, Shiho K ; Sanson-Fisher, Robert W ; Clinton-McHarg, Tara ; Carey, Mariko L ; Paul, Christine L</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-b480t-705a7ad3956aeba0b6ba6dd2a668c6571ef5be657869cdb601a30fd01e8f42eb3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Cancer</topic><topic>Delivery of Health Care, Integrated - standards</topic><topic>Efficiency</topic><topic>Guideline Adherence - standards</topic><topic>Health behavior</topic><topic>Health care</topic><topic>Humans</topic><topic>Medical Oncology - standards</topic><topic>National Academies of Science, Engineering, and Medicine (U.S.) Health and Medicine Division</topic><topic>Neoplasms - therapy</topic><topic>Outcome and Process Assessment (Health Care) - standards</topic><topic>Patients</topic><topic>Practice Guidelines as Topic - standards</topic><topic>Practice Patterns, Physicians' - standards</topic><topic>Psychometrics</topic><topic>Quality Indicators, Health Care - standards</topic><topic>Quality of life</topic><topic>Reproducibility of Results</topic><topic>Studies</topic><topic>Surveys and Questionnaires - standards</topic><topic>Treatment Outcome</topic><topic>United States</topic><topic>Validity</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Tzelepis, Flora</creatorcontrib><creatorcontrib>Rose, Shiho K</creatorcontrib><creatorcontrib>Sanson-Fisher, Robert W</creatorcontrib><creatorcontrib>Clinton-McHarg, Tara</creatorcontrib><creatorcontrib>Carey, Mariko L</creatorcontrib><creatorcontrib>Paul, Christine L</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>Oncogenes and Growth Factors Abstracts</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>AIDS and Cancer Research Abstracts</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Access via ProQuest (Open Access)</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>BMC cancer</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Tzelepis, Flora</au><au>Rose, Shiho K</au><au>Sanson-Fisher, Robert W</au><au>Clinton-McHarg, Tara</au><au>Carey, Mariko L</au><au>Paul, Christine L</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Are we missing the Institute of Medicine's mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care</atitle><jtitle>BMC cancer</jtitle><addtitle>BMC Cancer</addtitle><date>2014-01-25</date><risdate>2014</risdate><volume>14</volume><issue>1</issue><spage>41</spage><epage>41</epage><pages>41-41</pages><artnum>41</artnum><issn>1471-2407</issn><eissn>1471-2407</eissn><abstract>The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients' values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support-relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures.
Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation.
Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was "information, communication and education" (19 measures). In contrast, only five measures assessed the "involvement of family and friends." Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability.
There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted.</abstract><cop>England</cop><pub>BioMed Central</pub><pmid>24460829</pmid><doi>10.1186/1471-2407-14-41</doi><tpages>1</tpages><oa>free_for_read</oa></addata></record> |
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subjects | Cancer Delivery of Health Care, Integrated - standards Efficiency Guideline Adherence - standards Health behavior Health care Humans Medical Oncology - standards National Academies of Science, Engineering, and Medicine (U.S.) Health and Medicine Division Neoplasms - therapy Outcome and Process Assessment (Health Care) - standards Patients Practice Guidelines as Topic - standards Practice Patterns, Physicians' - standards Psychometrics Quality Indicators, Health Care - standards Quality of life Reproducibility of Results Studies Surveys and Questionnaires - standards Treatment Outcome United States Validity |
title | Are we missing the Institute of Medicine's mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care |
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