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Using a personalized measure (Patient Generated Index (PGI)) to identify what matters to people with cancer
Purposes Patient Generated Index (PGI) is designed to both ask and document quality of life (QOL) concerns. Its validity with respect to standard QOL measures has not been fully established for advanced cancer when QOL concerns predominate. The specific objective of this study is to identify, for pe...
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Published in: | Supportive care in cancer 2016-01, Vol.24 (1), p.437-445 |
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container_title | Supportive care in cancer |
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creator | Aburub, Ala’ S. Gagnon, B. Rodríguez, A. M. Mayo, Nancy E. |
description | Purposes
Patient Generated Index (PGI) is designed to both ask and document quality of life (QOL) concerns. Its validity with respect to standard QOL measures has not been fully established for advanced cancer when QOL concerns predominate. The specific objective of this study is to identify, for people with advanced cancer, similarities and differences in ratings of global QOL between personalized and standard measures.
Methods
A total of 192 patients completed five QOL measures at study entry: PGI, generic measures (SF-6D, EQ-5D), and cancer-specific measures of QOL (McGill Quality of Life Questionnaire and Edmonton Symptoms Assessment Scale). Comparisons among total scores were compared using Generalized Estimating Equations (GEE).
Results
Patients voiced 114 areas of QOL concerns by the PGI with the top three being fatigue, sleep, and pain (39.2, 22.6, and 21.6 %, respectively). PGI total QOL score was 25 to 30 percentage points lower than those documented by the other measures, particularly when QOL was poor. Correlations between PGI and other measures were low.
Conclusion
PGI allowed patients to express a wide range of QOL concerns, many that were not assessed by other QOL measures. If only one QOL measure is to be included, either in a clinical setting or for research, the PGI would satisfy many of the criteria for “best choice.” PGI could be considered a cancer-specific QOL measure.
Implications for cancer
This study provides evidence that the PGI would be a good measure for patients and clinicians to use together to identify areas of concern that require attention and monitor changing needs. |
doi_str_mv | 10.1007/s00520-015-2821-7 |
format | article |
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Patient Generated Index (PGI) is designed to both ask and document quality of life (QOL) concerns. Its validity with respect to standard QOL measures has not been fully established for advanced cancer when QOL concerns predominate. The specific objective of this study is to identify, for people with advanced cancer, similarities and differences in ratings of global QOL between personalized and standard measures.
Methods
A total of 192 patients completed five QOL measures at study entry: PGI, generic measures (SF-6D, EQ-5D), and cancer-specific measures of QOL (McGill Quality of Life Questionnaire and Edmonton Symptoms Assessment Scale). Comparisons among total scores were compared using Generalized Estimating Equations (GEE).
Results
Patients voiced 114 areas of QOL concerns by the PGI with the top three being fatigue, sleep, and pain (39.2, 22.6, and 21.6 %, respectively). PGI total QOL score was 25 to 30 percentage points lower than those documented by the other measures, particularly when QOL was poor. Correlations between PGI and other measures were low.
Conclusion
PGI allowed patients to express a wide range of QOL concerns, many that were not assessed by other QOL measures. If only one QOL measure is to be included, either in a clinical setting or for research, the PGI would satisfy many of the criteria for “best choice.” PGI could be considered a cancer-specific QOL measure.
Implications for cancer
This study provides evidence that the PGI would be a good measure for patients and clinicians to use together to identify areas of concern that require attention and monitor changing needs.</description><identifier>ISSN: 0941-4355</identifier><identifier>EISSN: 1433-7339</identifier><identifier>DOI: 10.1007/s00520-015-2821-7</identifier><identifier>PMID: 26099901</identifier><language>eng</language><publisher>Berlin/Heidelberg: Springer Berlin Heidelberg</publisher><subject>Adult ; Aged ; Cancer ; Comparative analysis ; Fatigue - psychology ; Female ; Humans ; Male ; Medicine ; Medicine & Public Health ; Middle Aged ; Neoplasms - psychology ; Nursing ; Nursing Research ; Oncology ; Original Article ; Pain - psychology ; Pain Medicine ; Perceptions ; Personal Satisfaction ; Quality of Life ; Rehabilitation Medicine ; Severity of Illness Index ; Sleep Wake Disorders - psychology ; Surveys and Questionnaires</subject><ispartof>Supportive care in cancer, 2016-01, Vol.24 (1), p.437-445</ispartof><rights>Springer-Verlag Berlin Heidelberg 2015</rights><rights>COPYRIGHT 2016 Springer</rights><rights>Springer-Verlag Berlin Heidelberg 2016</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c509t-bc375766451cfd94a9bc80fbeb9329cac1340e64de6d2eddb46caefb8c2e50853</citedby><cites>FETCH-LOGICAL-c509t-bc375766451cfd94a9bc80fbeb9329cac1340e64de6d2eddb46caefb8c2e50853</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.proquest.com/docview/1749603544/fulltextPDF?pq-origsite=primo$$EPDF$$P50$$Gproquest$$H</linktopdf><linktohtml>$$Uhttps://www.proquest.com/docview/1749603544?pq-origsite=primo$$EHTML$$P50$$Gproquest$$H</linktohtml><link.rule.ids>314,780,784,21394,21395,27924,27925,33611,33612,34530,34531,43733,44115,74221,74639</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/26099901$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Aburub, Ala’ S.</creatorcontrib><creatorcontrib>Gagnon, B.</creatorcontrib><creatorcontrib>Rodríguez, A. M.</creatorcontrib><creatorcontrib>Mayo, Nancy E.</creatorcontrib><title>Using a personalized measure (Patient Generated Index (PGI)) to identify what matters to people with cancer</title><title>Supportive care in cancer</title><addtitle>Support Care Cancer</addtitle><addtitle>Support Care Cancer</addtitle><description>Purposes
Patient Generated Index (PGI) is designed to both ask and document quality of life (QOL) concerns. Its validity with respect to standard QOL measures has not been fully established for advanced cancer when QOL concerns predominate. The specific objective of this study is to identify, for people with advanced cancer, similarities and differences in ratings of global QOL between personalized and standard measures.
Methods
A total of 192 patients completed five QOL measures at study entry: PGI, generic measures (SF-6D, EQ-5D), and cancer-specific measures of QOL (McGill Quality of Life Questionnaire and Edmonton Symptoms Assessment Scale). Comparisons among total scores were compared using Generalized Estimating Equations (GEE).
Results
Patients voiced 114 areas of QOL concerns by the PGI with the top three being fatigue, sleep, and pain (39.2, 22.6, and 21.6 %, respectively). PGI total QOL score was 25 to 30 percentage points lower than those documented by the other measures, particularly when QOL was poor. Correlations between PGI and other measures were low.
Conclusion
PGI allowed patients to express a wide range of QOL concerns, many that were not assessed by other QOL measures. If only one QOL measure is to be included, either in a clinical setting or for research, the PGI would satisfy many of the criteria for “best choice.” PGI could be considered a cancer-specific QOL measure.
Implications for cancer
This study provides evidence that the PGI would be a good measure for patients and clinicians to use together to identify areas of concern that require attention and monitor changing needs.</description><subject>Adult</subject><subject>Aged</subject><subject>Cancer</subject><subject>Comparative analysis</subject><subject>Fatigue - psychology</subject><subject>Female</subject><subject>Humans</subject><subject>Male</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Middle Aged</subject><subject>Neoplasms - psychology</subject><subject>Nursing</subject><subject>Nursing Research</subject><subject>Oncology</subject><subject>Original Article</subject><subject>Pain - psychology</subject><subject>Pain Medicine</subject><subject>Perceptions</subject><subject>Personal Satisfaction</subject><subject>Quality of Life</subject><subject>Rehabilitation Medicine</subject><subject>Severity of Illness Index</subject><subject>Sleep Wake Disorders - psychology</subject><subject>Surveys and Questionnaires</subject><issn>0941-4355</issn><issn>1433-7339</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2016</creationdate><recordtype>article</recordtype><sourceid>ALSLI</sourceid><sourceid>HEHIP</sourceid><sourceid>M2R</sourceid><sourceid>M2S</sourceid><recordid>eNp1kUtv1DAUhSMEokPhB7BBlti0i5TrVxIvqwqGkSrBgq4tx76ZuuSF7agtvx6HKU-BvLiSz3eO7HuK4iWFMwpQv4kAkkEJVJasYbSsHxUbKjgva87V42IDStBScCmPimcx3gDQupbsaXHEKlBKAd0Un6-iH_fEkBlDnEbT-6_oyIAmLgHJyUeTPI6JbHHEYFKWdqPDuyxsd6enJE3Eu6z77p7cXptEBpNSDlqFGae5R3Lr0zWxZrQYnhdPOtNHfPEwj4urd28_XbwvLz9sdxfnl6WVoFLZWl7LuqqEpLZzShjV2ga6FlvFmbLGUi4AK-Gwcgyda0VlDXZtYxlKaCQ_Lk4OuXOYviwYkx58tNj3ZsRpiZrWQlQV1Ixm9PVf6M20hLyG75SqgEshflF706P2YzelYOwaqs-FYI0CBit19g8qH4eDt9OInc_3fxjowWDDFGPATs_BDybcawp6LVgfCta5YL0WrOvsefXw4KUd0P10_Gg0A-wAxCyNewy__ei_qd8AJWCulg</recordid><startdate>20160101</startdate><enddate>20160101</enddate><creator>Aburub, Ala’ S.</creator><creator>Gagnon, B.</creator><creator>Rodríguez, A. M.</creator><creator>Mayo, Nancy E.</creator><general>Springer Berlin Heidelberg</general><general>Springer</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>0-V</scope><scope>3V.</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88J</scope><scope>8AO</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HEHIP</scope><scope>K9.</scope><scope>KB0</scope><scope>M0S</scope><scope>M1P</scope><scope>M2R</scope><scope>M2S</scope><scope>NAPCQ</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>Q9U</scope><scope>7X8</scope></search><sort><creationdate>20160101</creationdate><title>Using a personalized measure (Patient Generated Index (PGI)) to identify what matters to people with cancer</title><author>Aburub, Ala’ S. ; Gagnon, B. ; Rodríguez, A. M. ; Mayo, Nancy E.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c509t-bc375766451cfd94a9bc80fbeb9329cac1340e64de6d2eddb46caefb8c2e50853</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2016</creationdate><topic>Adult</topic><topic>Aged</topic><topic>Cancer</topic><topic>Comparative analysis</topic><topic>Fatigue - psychology</topic><topic>Female</topic><topic>Humans</topic><topic>Male</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Middle Aged</topic><topic>Neoplasms - psychology</topic><topic>Nursing</topic><topic>Nursing Research</topic><topic>Oncology</topic><topic>Original Article</topic><topic>Pain - psychology</topic><topic>Pain Medicine</topic><topic>Perceptions</topic><topic>Personal Satisfaction</topic><topic>Quality of Life</topic><topic>Rehabilitation Medicine</topic><topic>Severity of Illness Index</topic><topic>Sleep Wake Disorders - psychology</topic><topic>Surveys and Questionnaires</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Aburub, Ala’ S.</creatorcontrib><creatorcontrib>Gagnon, B.</creatorcontrib><creatorcontrib>Rodríguez, A. M.</creatorcontrib><creatorcontrib>Mayo, Nancy E.</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 Social Sciences Premium Collection【Remote access available】</collection><collection>ProQuest Central (Corporate)</collection><collection>Nursing & Allied Health Database</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Social Science Database (Alumni Edition)</collection><collection>ProQuest Pharma Collection</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)</collection><collection>ProQuest Central</collection><collection>Social Science Premium Collection</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>ProQuest Central Student</collection><collection>Sociology Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Social Science Database</collection><collection>Sociology Database</collection><collection>Nursing & Allied Health Premium</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 Central China</collection><collection>ProQuest Central Basic</collection><collection>MEDLINE - Academic</collection><jtitle>Supportive care in cancer</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Aburub, Ala’ S.</au><au>Gagnon, B.</au><au>Rodríguez, A. M.</au><au>Mayo, Nancy E.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Using a personalized measure (Patient Generated Index (PGI)) to identify what matters to people with cancer</atitle><jtitle>Supportive care in cancer</jtitle><stitle>Support Care Cancer</stitle><addtitle>Support Care Cancer</addtitle><date>2016-01-01</date><risdate>2016</risdate><volume>24</volume><issue>1</issue><spage>437</spage><epage>445</epage><pages>437-445</pages><issn>0941-4355</issn><eissn>1433-7339</eissn><abstract>Purposes
Patient Generated Index (PGI) is designed to both ask and document quality of life (QOL) concerns. Its validity with respect to standard QOL measures has not been fully established for advanced cancer when QOL concerns predominate. The specific objective of this study is to identify, for people with advanced cancer, similarities and differences in ratings of global QOL between personalized and standard measures.
Methods
A total of 192 patients completed five QOL measures at study entry: PGI, generic measures (SF-6D, EQ-5D), and cancer-specific measures of QOL (McGill Quality of Life Questionnaire and Edmonton Symptoms Assessment Scale). Comparisons among total scores were compared using Generalized Estimating Equations (GEE).
Results
Patients voiced 114 areas of QOL concerns by the PGI with the top three being fatigue, sleep, and pain (39.2, 22.6, and 21.6 %, respectively). PGI total QOL score was 25 to 30 percentage points lower than those documented by the other measures, particularly when QOL was poor. Correlations between PGI and other measures were low.
Conclusion
PGI allowed patients to express a wide range of QOL concerns, many that were not assessed by other QOL measures. If only one QOL measure is to be included, either in a clinical setting or for research, the PGI would satisfy many of the criteria for “best choice.” PGI could be considered a cancer-specific QOL measure.
Implications for cancer
This study provides evidence that the PGI would be a good measure for patients and clinicians to use together to identify areas of concern that require attention and monitor changing needs.</abstract><cop>Berlin/Heidelberg</cop><pub>Springer Berlin Heidelberg</pub><pmid>26099901</pmid><doi>10.1007/s00520-015-2821-7</doi><tpages>9</tpages></addata></record> |
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subjects | Adult Aged Cancer Comparative analysis Fatigue - psychology Female Humans Male Medicine Medicine & Public Health Middle Aged Neoplasms - psychology Nursing Nursing Research Oncology Original Article Pain - psychology Pain Medicine Perceptions Personal Satisfaction Quality of Life Rehabilitation Medicine Severity of Illness Index Sleep Wake Disorders - psychology Surveys and Questionnaires |
title | Using a personalized measure (Patient Generated Index (PGI)) to identify what matters to people with cancer |
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