{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,12]],"date-time":"2026-09-12T23:26:30Z","timestamp":1789255590965,"version":"build-2803163510"},"reference-count":36,"publisher":"Springer Science and Business Media LLC","issue":"6","license":[{"start":{"date-parts":[[2023,6,1]],"date-time":"2023-06-01T00:00:00Z","timestamp":1685577600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,6,2]],"date-time":"2023-06-02T00:00:00Z","timestamp":1685664000000},"content-version":"vor","delay-in-days":1,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"GSK"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Support Care Cancer"],"published-print":{"date-parts":[[2023,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Purpose<\/jats:title>\n                <jats:p>We aimed to explore patient-reported outcomes (PROs) and patient and physician concordance of side effects perception across lines of therapy (LOT) in multiple myeloma (MM) within the United States of America (USA).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Data were drawn from the Adelphi Real World MM III Disease Specific Programme\u2122, a point-in-time survey of hemato-oncologists\/hematologists and their patients with MM conducted in the USA between August 2020 and July 2021. Physicians reported patient characteristics and side effects. Patients reported side-effect bother and health-related quality of life (HRQoL) using validated PRO tools (European Organisation for the Research and Treatment of Cancer Quality of Life Core Questionnaire\/-MM Module [EORTC QLQ-C30\/-MY20], EQ-5D-3L and Functional Assessment of Cancer Therapy\u2014General Population physical item 5). Descriptive, linear regression and concordance analyses were performed.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Records from 63 physicians and 132 patients with MM were analyzed. EORTC QLQ-C30\/-MY20 and EQ-5D-3L scores were consistent across LOTs. Scores tended to be worse with higher side-effect bother; patients \u201cvery much\u201d bothered by side effects had lower median (interquartile range) global health status scores (33.3 [25.0\u201350.0]) than those \u201cnot at all\u201d bothered (79.2 [66.7\u201383.3]). Patient and physician concordance on side-effect reporting was poor to fair. Patients frequently reported fatigue and nausea as bothersome side effects.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>HRQoL of patients with MM was worse with greater side-effect bother. Discordant patient and physician reporting of side effects indicated a need for improved communication during management of MM.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s00520-023-07836-x","type":"journal-article","created":{"date-parts":[[2023,6,2]],"date-time":"2023-06-02T16:01:27Z","timestamp":1685721687000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Real-world patient-reported outcomes and concordance between patient and physician reporting of side effects across lines of therapy in multiple myeloma within the USA"],"prefix":"10.1007","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9819-8737","authenticated-orcid":false,"given":"Amanda","family":"Ribbands","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7956-5917","authenticated-orcid":false,"given":"Natalie","family":"Boytsov","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0238-6723","authenticated-orcid":false,"given":"Abigail","family":"Bailey","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6977-0220","authenticated-orcid":false,"given":"Boris","family":"Gorsh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9618-3635","authenticated-orcid":false,"given":"Emily","family":"Luke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4424-1503","authenticated-orcid":false,"given":"Annabel","family":"Lambert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2023,6,2]]},"reference":[{"key":"7836_CR1","doi-asserted-by":"publisher","first-page":"17046","DOI":"10.1038\/nrdp.2017.46","volume":"3","author":"SK Kumar","year":"2017","unstructured":"Kumar SK, Rajkumar V, Kyle RA et al (2017) Multiple myeloma. Nat Rev Dis Primers 3:17046","journal-title":"Nat Rev Dis Primers"},{"key":"7836_CR2","doi-asserted-by":"publisher","first-page":"e41","DOI":"10.1016\/j.clml.2021.07.028","volume":"22","author":"R LeBlanc","year":"2022","unstructured":"LeBlanc R, Bergstrom DJ, Cote J et al (2022) Management of Myeloma Manifestations and Complications: The Cornerstone of Supportive Care: Recommendation of the Canadian Myeloma Research Group (formerly Myeloma Canada Research Network) Consensus Guideline Consortium. Clin Lymphoma Myeloma Leuk 22:e41\u2013e56","journal-title":"Clin Lymphoma Myeloma Leuk"},{"key":"7836_CR3","doi-asserted-by":"publisher","first-page":"888","DOI":"10.1111\/bjh.14514","volume":"176","author":"JA Snowden","year":"2017","unstructured":"Snowden JA, Greenfield DM, Bird JM et al (2017) Guidelines for screening and management of late and long-term consequences of myeloma and its treatment. Br J Haematol 176:888\u2013907","journal-title":"Br J Haematol"},{"key":"7836_CR4","doi-asserted-by":"publisher","first-page":"309","DOI":"10.1016\/j.annonc.2020.11.014","volume":"32","author":"MA Dimopoulos","year":"2021","unstructured":"Dimopoulos MA, Moreau P, Terpos E et al (2021) Multiple myeloma: EHA-ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up(dagger). Ann Oncol 32:309\u2013322","journal-title":"Ann Oncol"},{"key":"7836_CR5","doi-asserted-by":"publisher","first-page":"508","DOI":"10.1182\/asheducation-2017.1.508","volume":"2017","author":"P Sonneveld","year":"2017","unstructured":"Sonneveld P (2017) Management of multiple myeloma in the relapsed\/refractory patient. Hematology Am Soc Hematol Educ Program 2017:508\u2013517","journal-title":"Hematology Am Soc Hematol Educ Program"},{"key":"7836_CR6","doi-asserted-by":"publisher","first-page":"1228","DOI":"10.1200\/JCO.18.02096","volume":"37","author":"J Mikhael","year":"2019","unstructured":"Mikhael J, Ismaila N, Cheung MC et al (2019) Treatment of Multiple Myeloma: ASCO and CCO Joint Clinical Practice Guideline. J Clin Oncol 37:1228\u20131263","journal-title":"J Clin Oncol"},{"key":"7836_CR7","doi-asserted-by":"publisher","first-page":"546","DOI":"10.1186\/s12885-020-07018-6","volume":"20","author":"SJ Fifer","year":"2020","unstructured":"Fifer SJ, Ho KA, Lybrand S et al (2020) Alignment of preferences in the treatment of multiple myeloma - a discrete choice experiment of patient, carer, physician, and nurse preferences. BMC Cancer 20:546","journal-title":"BMC Cancer"},{"key":"7836_CR8","doi-asserted-by":"publisher","first-page":"40","DOI":"10.1038\/s41408-021-00432-4","volume":"11","author":"E Terpos","year":"2021","unstructured":"Terpos E, Mikhael J, Hajek R et al (2021) Management of patients with multiple myeloma beyond the clinical-trial setting: understanding the balance between efficacy, safety and tolerability, and quality of life. Blood Cancer J 11:40","journal-title":"Blood Cancer J"},{"key":"7836_CR9","doi-asserted-by":"publisher","first-page":"2266","DOI":"10.1038\/s41375-019-0435-7","volume":"33","author":"UH Gandhi","year":"2019","unstructured":"Gandhi UH, Cornell RF, Lakshman A et al (2019) Outcomes of patients with multiple myeloma refractory to CD38-targeted monoclonal antibody therapy. Leukemia 33:2266\u20132275","journal-title":"Leukemia"},{"issue":"Supplement 1","key":"7836_CR10","doi-asserted-by":"publisher","first-page":"2705","DOI":"10.1182\/blood-2021-152301","volume":"138","author":"F Wang","year":"2021","unstructured":"Wang F, Gorsh B, DerSarkissian M et al (2021) Treatment Patterns and Outcomes of Patients with Double-Class Refractory or Triple-Class Refractory Multiple Myeloma: A Retrospective US Electronic Health Record Database Study. Blood 138(Supplement 1):2705","journal-title":"Blood"},{"key":"7836_CR11","doi-asserted-by":"publisher","first-page":"2843","DOI":"10.2217\/fon-2022-0378","volume":"18","author":"L Batchelder","year":"2022","unstructured":"Batchelder L, Philpott S, Divino V et al (2022) Physician treatment preferences for relapsed\/refractory multiple myeloma: a discrete choice experiment. Future Oncol 18:2843\u20132856","journal-title":"Future Oncol"},{"key":"7836_CR12","doi-asserted-by":"publisher","first-page":"264","DOI":"10.1186\/s12885-019-5467-x","volume":"19","author":"JA Parsons","year":"2019","unstructured":"Parsons JA, Greenspan NR, Baker NA et al (2019) Treatment preferences of patients with relapsed and refractory multiple myeloma: a qualitative study. BMC Cancer 19:264","journal-title":"BMC Cancer"},{"key":"7836_CR13","doi-asserted-by":"publisher","first-page":"3063","DOI":"10.1185\/03007990802457040","volume":"24","author":"P Anderson","year":"2008","unstructured":"Anderson P, Benford M, Harris N et al (2008) Real-world physician and patient behaviour across countries: Disease-Specific Programmes - a means to understand. Curr Med Res Opin 24:3063\u20133072","journal-title":"Curr Med Res Opin"},{"key":"7836_CR14","doi-asserted-by":"publisher","first-page":"371","DOI":"10.2147\/DMSO.S120101","volume":"9","author":"V Higgins","year":"2016","unstructured":"Higgins V, Piercy J, Roughley A et al (2016) Trends in medication use in patients with type 2 diabetes mellitus: a long-term view of real-world treatment between 2000 and 2015. Diabetes Metab Syndr Obes 9:371\u2013380","journal-title":"Diabetes Metab Syndr Obes"},{"key":"7836_CR15","doi-asserted-by":"publisher","first-page":"e010352","DOI":"10.1136\/bmjopen-2015-010352","volume":"6","author":"SM Babineaux","year":"2016","unstructured":"Babineaux SM, Curtis B, Holbrook T et al (2016) Evidence for validity of a national physician and patient-reported, cross-sectional survey in China and UK: the Disease Specific Programme. BMJ Open 6:e010352","journal-title":"BMJ Open"},{"key":"7836_CR16","doi-asserted-by":"publisher","first-page":"605","DOI":"10.1046\/j.1365-2141.1999.01206.x","volume":"104","author":"ML Stead","year":"1999","unstructured":"Stead ML, Brown JM, Velikova G et al (1999) Development of an EORTC questionnaire module to be used in health-related quality-of-life assessment for patients with multiple myeloma. European Organization for Research and Treatment of Cancer Study Group on Quality of Life. Br J Haematol 104:605\u2013611","journal-title":"Br J Haematol"},{"key":"7836_CR17","doi-asserted-by":"publisher","first-page":"141","DOI":"10.1016\/S1359-6349(12)70023-X","volume":"10","author":"G Velikova","year":"2012","unstructured":"Velikova G, Coens C, Efficace F et al (2012) Health-Related Quality of Life in EORTC clinical trials \u2014 30 years of progress from methodological developments to making a real impact on oncology practice. EJC Suppl 10:141","journal-title":"EJC Suppl"},{"key":"7836_CR18","unstructured":"EORTC Quality of Life Questionnaire \u2013 Multiple Myeloma Module (EORTC QLQ-MY20) https:\/\/eprovide.mapi-trust.org\/instruments\/eortc-quality-of-life-questionnaire-multiple-myeloma-module. Accessed 27 January 2020"},{"key":"7836_CR19","doi-asserted-by":"publisher","first-page":"353","DOI":"10.2165\/00019053-199304050-00006","volume":"4","author":"MC Reilly","year":"1993","unstructured":"Reilly MC, Zbrozek AS, Dukes EM (1993) The validity and reproducibility of a work productivity and activity impairment instrument. Pharmacoeconomics 4:353\u2013365","journal-title":"Pharmacoeconomics"},{"key":"7836_CR20","doi-asserted-by":"publisher","first-page":"7896","DOI":"10.1002\/cam4.3391","volume":"9","author":"X Li","year":"2020","unstructured":"Li X, Liu J, Chen M et al (2020) Health-related quality of life of patients with multiple myeloma: A real-world study in China. Cancer Med 9:7896\u20137913","journal-title":"Cancer Med"},{"key":"7836_CR21","doi-asserted-by":"publisher","first-page":"e160","DOI":"10.1016\/j.clml.2020.10.002","volume":"21","author":"M Engelhardt","year":"2021","unstructured":"Engelhardt M, Ihorst G, Singh M et al (2021) Real-World Evaluation of Health-Related Quality of Life in Patients With Multiple Myeloma From Germany. Clin Lymphoma Myeloma Leuk 21:e160\u2013e175","journal-title":"Clin Lymphoma Myeloma Leuk"},{"key":"7836_CR22","doi-asserted-by":"publisher","first-page":"159","DOI":"10.2307\/2529310","volume":"33","author":"JR Landis","year":"1977","unstructured":"Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33:159\u2013174","journal-title":"Biometrics"},{"key":"7836_CR23","doi-asserted-by":"publisher","first-page":"2955","DOI":"10.1182\/blood-2016-01-631200","volume":"127","author":"P Sonneveld","year":"2016","unstructured":"Sonneveld P, Avet-Loiseau H, Lonial S et al (2016) Treatment of multiple myeloma with high-risk cytogenetics: a consensus of the International Myeloma Working Group. Blood 127:2955\u20132962","journal-title":"Blood"},{"key":"7836_CR24","doi-asserted-by":"publisher","first-page":"1996","DOI":"10.1002\/cncr.34134","volume":"128","author":"EK O'Donnell","year":"2022","unstructured":"O\u2019Donnell EK, Shapiro YN, Yee AJ et al (2022) Quality of life, psychological distress, and prognostic perceptions in patients with multiple myeloma. Cancer 128:1996\u20132004","journal-title":"Cancer"},{"key":"7836_CR25","doi-asserted-by":"publisher","first-page":"1355","DOI":"10.1634\/theoncologist.2016-0104","volume":"21","author":"S Usmani","year":"2016","unstructured":"Usmani S, Ahmadi T, Ng Y et al (2016) Analysis of Real-World Data on Overall Survival in Multiple Myeloma Patients With >\/=3 Prior Lines of Therapy Including a Proteasome Inhibitor (PI) and an Immunomodulatory Drug (IMiD), or Double Refractory to a PI and an IMiD. Oncologist 21:1355\u20131361","journal-title":"Oncologist"},{"key":"7836_CR26","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1016\/j.clml.2019.09.621","volume":"20","author":"J Mikhael","year":"2020","unstructured":"Mikhael J (2020) Treatment Options for Triple-class Refractory Multiple Myeloma. Clin Lymphoma Myeloma Leuk 20:1\u20137","journal-title":"Clin Lymphoma Myeloma Leuk"},{"key":"7836_CR27","doi-asserted-by":"publisher","first-page":"991","DOI":"10.1002\/cncr.31133","volume":"124","author":"TP Pearman","year":"2018","unstructured":"Pearman TP, Beaumont JL, Mroczek D et al (2018) Validity and usefulness of a single-item measure of patient-reported bother from side effects of cancer therapy. Cancer 124:991\u2013997","journal-title":"Cancer"},{"key":"7836_CR28","doi-asserted-by":"publisher","unstructured":"Schmidt H, Nordhausen T, Boese S, Vordermark D, Wheelwright S, Wienke A, Johnson CD\u00a0(2018) Factors influencing global health related quality of life in elderly cancer patients: results of a secondary data analysis.\u00a0Geriatrics (Basel) 3(1):5. https:\/\/doi.org\/10.3390\/geriatrics3010005","DOI":"10.3390\/geriatrics3010005"},{"key":"7836_CR29","doi-asserted-by":"publisher","first-page":"197","DOI":"10.1016\/j.ctrv.2014.12.010","volume":"41","author":"MT Puts","year":"2015","unstructured":"Puts MT, Tapscott B, Fitch M et al (2015) A systematic review of factors influencing older adults\u2019 decision to accept or decline cancer treatment. Cancer Treat Rev 41:197\u2013215","journal-title":"Cancer Treat Rev"},{"key":"7836_CR30","doi-asserted-by":"publisher","first-page":"3618","DOI":"10.1200\/JCO.2017.75.2311","volume":"35","author":"T Gilligan","year":"2017","unstructured":"Gilligan T, Coyle N, Frankel RM et al (2017) Patient-Clinician Communication: American Society of Clinical Oncology Consensus Guideline. J Clin Oncol 35:3618\u20133632","journal-title":"J Clin Oncol"},{"key":"7836_CR31","doi-asserted-by":"publisher","first-page":"878","DOI":"10.1016\/j.annonc.2022.04.007","volume":"33","author":"M Di Maio","year":"2022","unstructured":"Di Maio M, Basch E, Denis F et al (2022) The role of patient-reported outcome measures in the continuum of cancer clinical care: ESMO Clinical Practice Guideline. Ann Oncol 33:878\u2013892","journal-title":"Ann Oncol"},{"key":"7836_CR32","first-page":"101","volume":"10","author":"D Sim","year":"2016","unstructured":"Sim D, Yuan SE, Yun JH (2016) Health literacy and physician-patient communication: a review of the literature. Int J Commun Health 10:101\u2013114","journal-title":"Int J Commun Health"},{"key":"7836_CR33","doi-asserted-by":"publisher","first-page":"910","DOI":"10.1200\/JCO.2014.57.9334","volume":"33","author":"M Di Maio","year":"2015","unstructured":"Di Maio M, Gallo C, Leighl NB et al (2015) Symptomatic toxicities experienced during anticancer treatment: agreement between patient and physician reporting in three randomized trials. J Clin Oncol 33:910\u2013915","journal-title":"J Clin Oncol"},{"key":"7836_CR34","doi-asserted-by":"publisher","first-page":"1159","DOI":"10.1016\/j.ejca.2006.01.032","volume":"42","author":"MA Petersen","year":"2006","unstructured":"Petersen MA, Larsen H, Pedersen L et al (2006) Assessing health-related quality of life in palliative care: comparing patient and physician assessments. Eur J Cancer 42:1159\u20131166","journal-title":"Eur J Cancer"},{"key":"7836_CR35","doi-asserted-by":"publisher","first-page":"59","DOI":"10.2217\/pmt-2021-0013","volume":"12","author":"B Quinn","year":"2022","unstructured":"Quinn B, Ludwig H, Bailey A et al (2022) Physical, emotional and social pain communication by patients diagnosed and living with multiple myeloma. Pain Manag 12:59\u201374","journal-title":"Pain Manag"},{"key":"7836_CR36","doi-asserted-by":"publisher","first-page":"60","DOI":"10.1186\/s12913-020-4901-8","volume":"20","author":"SB Tavakoly Sany","year":"2020","unstructured":"Tavakoly Sany SB, Behzhad F, Ferns G et al (2020) Communication skills training for physicians improves health literacy and medical outcomes among patients with hypertension: a randomized controlled trial. BMC Health Serv Res 20:60","journal-title":"BMC Health Serv Res"}],"container-title":["Supportive Care in Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00520-023-07836-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00520-023-07836-x\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00520-023-07836-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,6,10]],"date-time":"2023-06-10T09:11:13Z","timestamp":1686388273000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00520-023-07836-x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,6]]},"references-count":36,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2023,6]]}},"alternative-id":["7836"],"URL":"https:\/\/doi.org\/10.1007\/s00520-023-07836-x","relation":{},"ISSN":["0941-4355","1433-7339"],"issn-type":[{"value":"0941-4355","type":"print"},{"value":"1433-7339","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,6]]},"assertion":[{"value":"4 January 2023","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"24 May 2023","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"2 June 2023","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Using a checkbox, patients provided informed consent to take part in the survey. Data were collected in such a way that patients and physicians could not be identified directly.Physician and patient data were pseudo-anonymized. A code was assigned when data were collected. Upon receipt by Adelphi Real World, data were pseudo-anonymized again to mitigate against tracing them back to the individual. Data were aggregated before being shared with the subscriber and\/or for publication.This research was submitted to the Western Institutional Review Board, study protocol number AG8847.Data collection was undertaken in line with European Pharmaceutical Marketing Research Association guidelines and as such it did not require ethics committee approval. Each survey was performed in full accordance with relevant legislation at the time of data collection, including the US Health Insurance Portability and Accountability Act 1996 and Health Information Technology for Economic and Clinical Health Act legislation. Complete descriptions of the DSP methodology and their generalizability have been published [13, 14, 15].","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"AR, AB, EL and AL are employees of Adelphi Real World. BG and NB are employees of and hold stocks\/shares in GSK.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"371"}}