The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure
The Sarcoma Assessment Measure (SAM) was developed as a sarcoma-specific patient-reported outcome measure to be used in clinical practice. We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the prelimi...
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creator | Hulbert-Williams, Lee Hulbert-Williams, Nicholas J Martins, Ana Storey, Lesley Bradley, Jennie O'Sullivan, Hatty Fern, Lorna A Lawal, Maria Windsor, Rachael Gerrand, Craig Whelan, Jeremy S Bennister, Lindsey Wells, Mary Taylor, Rachel M |
description | The Sarcoma Assessment Measure (SAM) was developed as a sarcoma-specific patient-reported outcome measure to be used in clinical practice. We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the preliminary validation of SAM. The 22-item SAM was administered alongside a validated quality of life questionnaire and measure of activities of daily living. Linear modelling was used to build a measure, which had predictive validity in comparison to more established outcome measures. Of the 762 patients who participated in the study, 44.1% identified as male, and participant age ranged from 13 to 82 years. Clinically, participants presented with a range of soft tissue (82.2%) and bone (21.8%) sarcomas. Our preliminary analysis indicates that SAM accounts for 35% of the global quality of life scale and 18% of the Toronto Extremity Salvage Scale (TESS); so psychometrically, it overlaps with quality of life and activities of daily living, but also measures distinct concerns. This demonstrates that this measure picks up issues that are important to patients with sarcoma that are not reflected in other measures. We have established the preliminary validity of SAM and believe it has utility as a patient-reported outcome measure both as a research tool and for assessing the impact of symptoms and dysfunction related to sarcoma as part of clinical care. Further validation using a larger and more clinically diverse sample is now needed. |
doi_str_mv | 10.3390/cancers16061096 |
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We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the preliminary validation of SAM. The 22-item SAM was administered alongside a validated quality of life questionnaire and measure of activities of daily living. Linear modelling was used to build a measure, which had predictive validity in comparison to more established outcome measures. Of the 762 patients who participated in the study, 44.1% identified as male, and participant age ranged from 13 to 82 years. Clinically, participants presented with a range of soft tissue (82.2%) and bone (21.8%) sarcomas. Our preliminary analysis indicates that SAM accounts for 35% of the global quality of life scale and 18% of the Toronto Extremity Salvage Scale (TESS); so psychometrically, it overlaps with quality of life and activities of daily living, but also measures distinct concerns. This demonstrates that this measure picks up issues that are important to patients with sarcoma that are not reflected in other measures. We have established the preliminary validity of SAM and believe it has utility as a patient-reported outcome measure both as a research tool and for assessing the impact of symptoms and dysfunction related to sarcoma as part of clinical care. Further validation using a larger and more clinically diverse sample is now needed.</description><identifier>ISSN: 2072-6694</identifier><identifier>EISSN: 2072-6694</identifier><identifier>DOI: 10.3390/cancers16061096</identifier><identifier>PMID: 38539431</identifier><language>eng</language><publisher>Switzerland: MDPI AG</publisher><subject>Activities of daily living ; Analysis ; Cancer ; Clinical outcomes ; Clinical trials ; Development and progression ; Health care ; Hospitals ; Medical research ; Medicine, Experimental ; Metastasis ; Older people ; Patient outcomes ; Patients ; Quality of life ; Quantitative psychology ; Questionnaires ; R&D ; Research & development ; Research ethics ; Sarcoma ; Surveys ; Tumors ; Young adults</subject><ispartof>Cancers, 2024-03, Vol.16 (6), p.1096</ispartof><rights>COPYRIGHT 2024 MDPI AG</rights><rights>2024 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>2024 by the authors. 2024</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c443t-feb87a274923e225fde3d704ce3a11f653fb2f80a105ccd192608dfb2138a0ad3</cites><orcidid>0000-0003-4821-8466 ; 0000-0002-0853-0925 ; 0000-0001-5892-6488 ; 0000-0002-7355-5571</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC10968476/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC10968476/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,885,27922,27923,53789,53791</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/38539431$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Hulbert-Williams, Lee</creatorcontrib><creatorcontrib>Hulbert-Williams, Nicholas J</creatorcontrib><creatorcontrib>Martins, Ana</creatorcontrib><creatorcontrib>Storey, Lesley</creatorcontrib><creatorcontrib>Bradley, Jennie</creatorcontrib><creatorcontrib>O'Sullivan, Hatty</creatorcontrib><creatorcontrib>Fern, Lorna A</creatorcontrib><creatorcontrib>Lawal, Maria</creatorcontrib><creatorcontrib>Windsor, Rachael</creatorcontrib><creatorcontrib>Gerrand, Craig</creatorcontrib><creatorcontrib>Whelan, Jeremy S</creatorcontrib><creatorcontrib>Bennister, Lindsey</creatorcontrib><creatorcontrib>Wells, Mary</creatorcontrib><creatorcontrib>Taylor, Rachel M</creatorcontrib><title>The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure</title><title>Cancers</title><addtitle>Cancers (Basel)</addtitle><description>The Sarcoma Assessment Measure (SAM) was developed as a sarcoma-specific patient-reported outcome measure to be used in clinical practice. We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the preliminary validation of SAM. The 22-item SAM was administered alongside a validated quality of life questionnaire and measure of activities of daily living. Linear modelling was used to build a measure, which had predictive validity in comparison to more established outcome measures. Of the 762 patients who participated in the study, 44.1% identified as male, and participant age ranged from 13 to 82 years. Clinically, participants presented with a range of soft tissue (82.2%) and bone (21.8%) sarcomas. Our preliminary analysis indicates that SAM accounts for 35% of the global quality of life scale and 18% of the Toronto Extremity Salvage Scale (TESS); so psychometrically, it overlaps with quality of life and activities of daily living, but also measures distinct concerns. This demonstrates that this measure picks up issues that are important to patients with sarcoma that are not reflected in other measures. We have established the preliminary validity of SAM and believe it has utility as a patient-reported outcome measure both as a research tool and for assessing the impact of symptoms and dysfunction related to sarcoma as part of clinical care. Further validation using a larger and more clinically diverse sample is now needed.</description><subject>Activities of daily living</subject><subject>Analysis</subject><subject>Cancer</subject><subject>Clinical outcomes</subject><subject>Clinical trials</subject><subject>Development and progression</subject><subject>Health care</subject><subject>Hospitals</subject><subject>Medical research</subject><subject>Medicine, Experimental</subject><subject>Metastasis</subject><subject>Older people</subject><subject>Patient outcomes</subject><subject>Patients</subject><subject>Quality of life</subject><subject>Quantitative psychology</subject><subject>Questionnaires</subject><subject>R&D</subject><subject>Research & development</subject><subject>Research ethics</subject><subject>Sarcoma</subject><subject>Surveys</subject><subject>Tumors</subject><subject>Young adults</subject><issn>2072-6694</issn><issn>2072-6694</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>8G5</sourceid><sourceid>ABUWG</sourceid><sourceid>AFKRA</sourceid><sourceid>AZQEC</sourceid><sourceid>BENPR</sourceid><sourceid>CCPQU</sourceid><sourceid>DWQXO</sourceid><sourceid>GNUQQ</sourceid><sourceid>GUQSH</sourceid><sourceid>M2O</sourceid><recordid>eNptUl1rHCEUldLShG2e-1aEvqQPk_i1OvalLKFfkDRLk_ZVXL1mDTPjRmcC-fd1yQebUH1Qjuec6z1chN5TcsS5JsfODg5yoZJISrR8hfYZUayRUovXO_c9dFDKNamLc6qkeov2eDvnWnC6j6bLNeALm13qLV6UAqX0MIz4DGyZMuDDi8XZp894maGLfRxsvsPLcufWqYcxR4f_2i56O8Y04BSwxb_SLXR4WZHq0vyGTcojeHw-jbUCPNq-Q2-C7QocPJwz9Ofb18uTH83p-fefJ4vTxgnBxybAqlWWKaEZB8bmwQP3iggH3FIa5JyHFQstsZTMnfNUM0laXzHKW0us5zP05d53M6168K7-KdvObHLsaycm2Wievwxxba7Srdnm2Qolq8Phg0NONxOU0fSxOOg6O0CaiuGEihqsriVn6OML6nWa8lD7M0xrKaRWdId1ZTswcQipFnZbU7NQbctE5ZHKOvoPq24PfXRpgBAr_kxwfC9wOZWSITw1SYnZTot5MS1V8WE3myf-42zwf_Zfu7c</recordid><startdate>20240308</startdate><enddate>20240308</enddate><creator>Hulbert-Williams, Lee</creator><creator>Hulbert-Williams, Nicholas J</creator><creator>Martins, Ana</creator><creator>Storey, Lesley</creator><creator>Bradley, Jennie</creator><creator>O'Sullivan, Hatty</creator><creator>Fern, Lorna A</creator><creator>Lawal, Maria</creator><creator>Windsor, Rachael</creator><creator>Gerrand, Craig</creator><creator>Whelan, Jeremy S</creator><creator>Bennister, Lindsey</creator><creator>Wells, Mary</creator><creator>Taylor, Rachel M</creator><general>MDPI AG</general><general>MDPI</general><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7T5</scope><scope>7TO</scope><scope>7XB</scope><scope>8FE</scope><scope>8FH</scope><scope>8FK</scope><scope>8G5</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>GNUQQ</scope><scope>GUQSH</scope><scope>H94</scope><scope>HCIFZ</scope><scope>LK8</scope><scope>M2O</scope><scope>M7P</scope><scope>MBDVC</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>Q9U</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-4821-8466</orcidid><orcidid>https://orcid.org/0000-0002-0853-0925</orcidid><orcidid>https://orcid.org/0000-0001-5892-6488</orcidid><orcidid>https://orcid.org/0000-0002-7355-5571</orcidid></search><sort><creationdate>20240308</creationdate><title>The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure</title><author>Hulbert-Williams, Lee ; 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We have reported in detail how SAM has been developed in collaboration with patients and healthcare professionals. The aim of this paper is to report the preliminary validation of SAM. The 22-item SAM was administered alongside a validated quality of life questionnaire and measure of activities of daily living. Linear modelling was used to build a measure, which had predictive validity in comparison to more established outcome measures. Of the 762 patients who participated in the study, 44.1% identified as male, and participant age ranged from 13 to 82 years. Clinically, participants presented with a range of soft tissue (82.2%) and bone (21.8%) sarcomas. Our preliminary analysis indicates that SAM accounts for 35% of the global quality of life scale and 18% of the Toronto Extremity Salvage Scale (TESS); so psychometrically, it overlaps with quality of life and activities of daily living, but also measures distinct concerns. This demonstrates that this measure picks up issues that are important to patients with sarcoma that are not reflected in other measures. We have established the preliminary validity of SAM and believe it has utility as a patient-reported outcome measure both as a research tool and for assessing the impact of symptoms and dysfunction related to sarcoma as part of clinical care. Further validation using a larger and more clinically diverse sample is now needed.</abstract><cop>Switzerland</cop><pub>MDPI AG</pub><pmid>38539431</pmid><doi>10.3390/cancers16061096</doi><orcidid>https://orcid.org/0000-0003-4821-8466</orcidid><orcidid>https://orcid.org/0000-0002-0853-0925</orcidid><orcidid>https://orcid.org/0000-0001-5892-6488</orcidid><orcidid>https://orcid.org/0000-0002-7355-5571</orcidid><oa>free_for_read</oa></addata></record> |
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subjects | Activities of daily living Analysis Cancer Clinical outcomes Clinical trials Development and progression Health care Hospitals Medical research Medicine, Experimental Metastasis Older people Patient outcomes Patients Quality of life Quantitative psychology Questionnaires R&D Research & development Research ethics Sarcoma Surveys Tumors Young adults |
title | The Sarcoma Assessment Measure (SAM): Preliminary Psychometric Validation of a Novel Patient-Reported Outcome Measure |
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