{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,18]],"date-time":"2026-09-18T23:13:45Z","timestamp":1789773225214,"version":"4.0.1"},"reference-count":64,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2012,10,26]],"date-time":"2012-10-26T00:00:00Z","timestamp":1351209600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["European J of Haematology"],"published-print":{"date-parts":[[2012,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Treatment advances in multiple myeloma have increased expected survival from months to years for some patients. Alongside improved survival emerges a need to better understand and measure health\u2010related quality of life (<jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content>), both in research and clinical settings.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>(i) Identify <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> tools validated for use in myeloma; (ii) identify issues important to <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> from the point of view of patients with myeloma; (iii) describe the measurement properties of each <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> tool; (iv) evaluate the content validity of <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> tools in terms of their ability to capture all issues important to patients and (v) explore the suitability of each <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> tool for use in different settings.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>Systematic literature review of six databases with no limits by date or language.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Thirty\u2010nine studies reported validation of 13 <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> instruments. Seven studies identified issues important to <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> from the patients' perspective. No instrument was comprehensive to all issues important to patients. The <jats:styled-content style=\"fixed-case\">EORTC<\/jats:styled-content>\u2010<jats:styled-content style=\"fixed-case\">QLQ<\/jats:styled-content>\u2010C30 and <jats:styled-content style=\"fixed-case\">MY<\/jats:styled-content>24 have undergone the most comprehensive psychometric validation. Most validation occurred in trial patients and not clinically representative groups. No studies evaluated clinical utility of tools alongside routine practice.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>The best existing <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> tools are designed predominantly for use in research. Reliable, valid and responsive tools exist for this purpose, but may miss issues important to patients. The design of <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> measures should be guided by intended utility, whether for research or clinical practice, and further validation of <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> tools in clinically representative groups is needed. Development and validation of <jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content> tools for clinical use may be of value.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ejh.12012","type":"journal-article","created":{"date-parts":[[2012,9,18]],"date-time":"2012-09-18T04:11:28Z","timestamp":1347941488000},"page":"437-457","source":"Crossref","is-referenced-by-count":71,"title":["What issues matter most to people with multiple myeloma and how well are we measuring them? A systematic review of quality of life tools"],"prefix":"10.1111","volume":"89","author":[{"given":"Thomas R.","family":"Osborne","sequence":"first","affiliation":[{"name":"Department of Palliative Care, Policy and Rehabilitation Cicely Saunders Institute, King's College London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina","family":"Ramsenthaler","sequence":"additional","affiliation":[{"name":"Department of Palliative Care, Policy and Rehabilitation Cicely Saunders Institute, King's College London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard J.","family":"Siegert","sequence":"additional","affiliation":[{"name":"School of Public Health and Psychosocial Studies and School of Rehabilitation and Occupational Studies Auckland University of Technology Auckland New Zealand"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Polly M.","family":"Edmonds","sequence":"additional","affiliation":[{"name":"Department of Palliative Care King's College Hospital London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephen \u2028A.","family":"Schey","sequence":"additional","affiliation":[{"name":"Department of Haematological Medicine King's College Hospital and King's College London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Irene J.","family":"Higginson","sequence":"additional","affiliation":[{"name":"Department of Palliative Care, Policy and Rehabilitation Cicely Saunders Institute, King's College London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2012,10,26]]},"reference":[{"key":"e_1_2_7_2_1","unstructured":"Cancer Research UK Incidence Statistics(June 2011).http:\/\/infocancerresearchukorg\/cancerstats\/reports\/"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejca.2006.01.065"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bmt.1704465"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0609.2009.01250.x"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0609.2009.01303.x"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.322.7297.1297"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-9-27"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-008-9430-6"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2004.06.078"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1385\/MO:18:1:65"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.bbmt.2008.09.023"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1191\/1352458504ms1116rr"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/0277-9536(95)00112-K"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1017\/CBO9780511545856.002"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732302238251"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2354.2009.01174.x"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1080\/02841860701558799"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2648.2009.05232.x"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejca.2007.04.022"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bmt.1704646"},{"key":"e_1_2_7_22_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2005.04.0824"},{"key":"e_1_2_7_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.730"},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1038\/bmt.2010.304"},{"key":"e_1_2_7_25_1","doi-asserted-by":"publisher","DOI":"10.1016\/S1470-2045(10)70198-4"},{"key":"e_1_2_7_26_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.0902-4441.2003.00195.x"},{"key":"e_1_2_7_27_1","doi-asserted-by":"publisher","DOI":"10.1188\/06.ONF.614-624"},{"key":"e_1_2_7_28_1","doi-asserted-by":"publisher","DOI":"10.1080\/13803390490918147"},{"key":"e_1_2_7_29_1","doi-asserted-by":"publisher","DOI":"10.1093\/annonc\/mdf031"},{"key":"e_1_2_7_30_1","first-page":"847","article-title":"Evaluation of QOL for stem cell transplantation recipients by SF\u201036 and FACT\u2010BMT: preliminary results of FACT\u2010BMT for Japanese patients","volume":"37","author":"Imataki O","year":"2010","journal-title":"Gan To Kagaku Ryoho"},{"key":"e_1_2_7_31_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clnu.2009.12.002"},{"key":"e_1_2_7_32_1","doi-asserted-by":"publisher","DOI":"10.1038\/bmt.2010.288"},{"key":"e_1_2_7_33_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0609.2009.01404.x"},{"key":"e_1_2_7_34_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0609.2011.01665.x"},{"key":"e_1_2_7_35_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-8-79"},{"key":"e_1_2_7_36_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2141.2008.07378.x"},{"key":"e_1_2_7_37_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2005.08.013"},{"key":"e_1_2_7_38_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.1710"},{"key":"e_1_2_7_39_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2002.08.131"},{"key":"e_1_2_7_40_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1026419414249"},{"key":"e_1_2_7_41_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-003-0464-6"},{"key":"e_1_2_7_42_1","doi-asserted-by":"publisher","DOI":"10.1093\/annonc\/mdm180"},{"key":"e_1_2_7_43_1","doi-asserted-by":"publisher","DOI":"10.1093\/intqhc\/5.3.201"},{"key":"e_1_2_7_44_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2141.1999.01206.x"},{"key":"e_1_2_7_45_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0609.2008.01126.x"},{"key":"e_1_2_7_46_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0609.2004.00346.x"},{"key":"e_1_2_7_47_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2006.10.006"},{"key":"e_1_2_7_48_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.1240"},{"key":"e_1_2_7_49_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bmt.1704815"},{"key":"e_1_2_7_50_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2141.1996.352889.x"},{"key":"e_1_2_7_51_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0609.2005.00509.x"},{"key":"e_1_2_7_52_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2141.1997.222667.x"},{"key":"e_1_2_7_53_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951506060470"},{"key":"e_1_2_7_54_1","doi-asserted-by":"publisher","DOI":"10.5737\/1181912x183141145"},{"key":"e_1_2_7_55_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-009-0793-1"},{"key":"e_1_2_7_56_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.1715"},{"key":"e_1_2_7_57_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2354.2010.01234.x"},{"key":"e_1_2_7_58_1","doi-asserted-by":"publisher","DOI":"10.7748\/ns2011.03.25.28.38.c8397"},{"key":"e_1_2_7_59_1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-151-4-200908180-00135"},{"key":"e_1_2_7_60_1","doi-asserted-by":"publisher","DOI":"10.1038\/sj.bmt.1701998"},{"key":"e_1_2_7_61_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0145-2126(97)00026-X"},{"key":"e_1_2_7_62_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-010-9631-7"},{"key":"e_1_2_7_63_1","first-page":"1","article-title":"Assessing quality\u2010of\u2010life in older people in care homes","author":"Hall S","year":"2011","journal-title":"Age Ageing"},{"key":"e_1_2_7_64_1","first-page":"1","article-title":"Trial\u2010related quality of life: using quality of life assessment to distinguish among cancer therapies","volume":"20","author":"Gotay CC","year":"1996","journal-title":"J Nat Cancer Inst Monogr"},{"key":"e_1_2_7_65_1","doi-asserted-by":"crossref","first-page":"254","DOI":"10.1093\/acprof:oso\/9780199231881.001.0001","volume-title":"Criterion Validation in Health measurement Scales: a Practical Guide to Their Developement and Use","author":"Streiner D","year":"2008"}],"container-title":["European Journal of Haematology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fejh.12012","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ejh.12012","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,31]],"date-time":"2023-10-31T18:23:44Z","timestamp":1698776624000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/ejh.12012"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2012,10,26]]},"references-count":64,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2012,12]]}},"alternative-id":["10.1111\/ejh.12012"],"URL":"https:\/\/doi.org\/10.1111\/ejh.12012","archive":["Portico"],"relation":{},"ISSN":["0902-4441","1600-0609"],"issn-type":[{"value":"0902-4441","type":"print"},{"value":"1600-0609","type":"electronic"}],"subject":[],"published":{"date-parts":[[2012,10,26]]}}}