Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: results from a population-based study using the PROFILES registry

Background This prospective population‐based study describes health‐related quality of life (HRQOL) and disease‐specific complaints of patients with multiple myeloma (MM) up to 10 yr post‐diagnosis. Methods The Eindhoven Cancer Registry was used to select all patients diagnosed with MM from 1999 to...

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Veröffentlicht in:European journal of haematology 2012-10, Vol.89 (4), p.311-319
Hauptverfasser: Mols, Floortje, Oerlemans, Simone, Vos, Allert H., Koster, Ad, Verelst, Silvia, Sonneveld, Pieter, van de Poll-Franse, Lonneke V.
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container_end_page 319
container_issue 4
container_start_page 311
container_title European journal of haematology
container_volume 89
creator Mols, Floortje
Oerlemans, Simone
Vos, Allert H.
Koster, Ad
Verelst, Silvia
Sonneveld, Pieter
van de Poll-Franse, Lonneke V.
description Background This prospective population‐based study describes health‐related quality of life (HRQOL) and disease‐specific complaints of patients with multiple myeloma (MM) up to 10 yr post‐diagnosis. Methods The Eindhoven Cancer Registry was used to select all patients diagnosed with MM from 1999 to 2010. Patients with MM completed the EORTC QLQ‐C30 and EORTC QLQ‐MY20 questionnaires at baseline (n = 156; 74% response rate) and 1 yr later (n = 80). The EORTC QLQ‐C30 was also completed by an age‐ and sex‐matched normative population (n = 500). Results Patients with MM reported statistically significant and clinically relevant worse scores on all EORTC QLQ‐C30 scales (all P's at least 
doi_str_mv 10.1111/j.1600-0609.2012.01831.x
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Methods The Eindhoven Cancer Registry was used to select all patients diagnosed with MM from 1999 to 2010. Patients with MM completed the EORTC QLQ‐C30 and EORTC QLQ‐MY20 questionnaires at baseline (n = 156; 74% response rate) and 1 yr later (n = 80). The EORTC QLQ‐C30 was also completed by an age‐ and sex‐matched normative population (n = 500). Results Patients with MM reported statistically significant and clinically relevant worse scores on all EORTC QLQ‐C30 scales (all P's at least < 0.01) compared to the norm. Also, patients with MM reported a mean decrease (e.g., worsening) between baseline and 1‐yr follow‐up scores for: quality of life (mean, 68 vs. 55, respectively, P < 0.001; 74% of patients had a deteriorated score), fatigue (33 vs. 39, P < 0.05; 50%), nausea and vomiting (6.3 vs. 13, P < 0.05; 71%), pain (33 vs. 43, P < 0.05; 59%), and dyspnea (17 vs. 33, P < 0.001; 66%). The most bothering symptoms during the past week were tingling hands/feet (32%), back pain (28%), bone aches/pain (26%), pain in arm/shoulder (19%), and feeling drowsy (18%). Also, 37% worried about their future health, 34% thought about their disease, and 21% worried about dying. Conclusion Patients with MM experience a very high symptom burden and low HRQOL. Future studies should focus on possible mechanisms that can predict low HRQOL and high symptom burden in patients with MM and should investigate optimal ways to alleviate these.]]></description><identifier>ISSN: 0902-4441</identifier><identifier>EISSN: 1600-0609</identifier><identifier>DOI: 10.1111/j.1600-0609.2012.01831.x</identifier><identifier>PMID: 22762785</identifier><language>eng</language><publisher>England: Blackwell Publishing Ltd</publisher><subject>Aged ; disease-specific complaints ; Female ; Humans ; Male ; Middle Aged ; multiple myeloma ; Multiple Myeloma - physiopathology ; Population Surveillance ; Quality of Life ; Registries ; side effects ; symptoms</subject><ispartof>European journal of haematology, 2012-10, Vol.89 (4), p.311-319</ispartof><rights>2012 John Wiley &amp; Sons A/S</rights><rights>2012 John Wiley &amp; Sons A/S.</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c4071-b61a52f92e18856073b37cdee78f7876d7b0a67e0f72b64d3abfab2aaa9ef32a3</citedby><cites>FETCH-LOGICAL-c4071-b61a52f92e18856073b37cdee78f7876d7b0a67e0f72b64d3abfab2aaa9ef32a3</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2Fj.1600-0609.2012.01831.x$$EPDF$$P50$$Gwiley$$H</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2Fj.1600-0609.2012.01831.x$$EHTML$$P50$$Gwiley$$H</linktohtml><link.rule.ids>314,780,784,1417,27924,27925,45574,45575</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/22762785$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Mols, Floortje</creatorcontrib><creatorcontrib>Oerlemans, Simone</creatorcontrib><creatorcontrib>Vos, Allert H.</creatorcontrib><creatorcontrib>Koster, Ad</creatorcontrib><creatorcontrib>Verelst, Silvia</creatorcontrib><creatorcontrib>Sonneveld, Pieter</creatorcontrib><creatorcontrib>van de Poll-Franse, Lonneke V.</creatorcontrib><title>Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: results from a population-based study using the PROFILES registry</title><title>European journal of haematology</title><addtitle>Eur J Haematol</addtitle><description><![CDATA[Background This prospective population‐based study describes health‐related quality of life (HRQOL) and disease‐specific complaints of patients with multiple myeloma (MM) up to 10 yr post‐diagnosis. Methods The Eindhoven Cancer Registry was used to select all patients diagnosed with MM from 1999 to 2010. Patients with MM completed the EORTC QLQ‐C30 and EORTC QLQ‐MY20 questionnaires at baseline (n = 156; 74% response rate) and 1 yr later (n = 80). The EORTC QLQ‐C30 was also completed by an age‐ and sex‐matched normative population (n = 500). Results Patients with MM reported statistically significant and clinically relevant worse scores on all EORTC QLQ‐C30 scales (all P's at least < 0.01) compared to the norm. Also, patients with MM reported a mean decrease (e.g., worsening) between baseline and 1‐yr follow‐up scores for: quality of life (mean, 68 vs. 55, respectively, P < 0.001; 74% of patients had a deteriorated score), fatigue (33 vs. 39, P < 0.05; 50%), nausea and vomiting (6.3 vs. 13, P < 0.05; 71%), pain (33 vs. 43, P < 0.05; 59%), and dyspnea (17 vs. 33, P < 0.001; 66%). The most bothering symptoms during the past week were tingling hands/feet (32%), back pain (28%), bone aches/pain (26%), pain in arm/shoulder (19%), and feeling drowsy (18%). Also, 37% worried about their future health, 34% thought about their disease, and 21% worried about dying. Conclusion Patients with MM experience a very high symptom burden and low HRQOL. Future studies should focus on possible mechanisms that can predict low HRQOL and high symptom burden in patients with MM and should investigate optimal ways to alleviate these.]]></description><subject>Aged</subject><subject>disease-specific complaints</subject><subject>Female</subject><subject>Humans</subject><subject>Male</subject><subject>Middle Aged</subject><subject>multiple myeloma</subject><subject>Multiple Myeloma - physiopathology</subject><subject>Population Surveillance</subject><subject>Quality of Life</subject><subject>Registries</subject><subject>side effects</subject><subject>symptoms</subject><issn>0902-4441</issn><issn>1600-0609</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2012</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNqNkcGO0zAQhiMEYsvCKyAfuaTYThsnSBzQbrtdVLEFFu3RmiTjrotTZ21HNG_Dk3DgyXDo0jNzsaX5v_lH8ycJYXTKYr3dTVlOaUpzWk45ZXxKWZGx6eFJMjk1niYTWlKezmYzdpa88H5HKeUlE8-TM85FzkUxnyS_Vggm3KcODQRsyEMPRoeBWEWMVkhg35BGewSPqe-w1krXpLZtZ0DvgyfQ2v2WtL0JujNI2gGNbYF0EDSO_b4jwca9f_8cHAEV0MVxsN1br_074tBH0hPlbEsiZbs-rqHtPq2iYUN86JuB9F5Hj3CPZPPlZnm9XnyN4Fb74IaXyTMFxuOrx_c8-bZc3F6s0vXN1fXFh3Vaz6hgaZUzmHNVcmRFMc-pyKpM1A2iKJQoRN6IikIukCrBq3zWZFApqDgAlKgyDtl58uY4t3P2oUcfZKt9jcbAHm3vJaNZWcSasygtjtLaWe8dKtk53YIbokiO6cmdHEOSY0hyTE_-TU8eIvr60aWvWmxO4L-4ouD9UfBDGxz-e7BcfFyNv8inRz4eDw8nHtx3mYtMzOXdpyu5_Hy52dyyOymyP6_GvOE</recordid><startdate>201210</startdate><enddate>201210</enddate><creator>Mols, Floortje</creator><creator>Oerlemans, Simone</creator><creator>Vos, Allert H.</creator><creator>Koster, Ad</creator><creator>Verelst, Silvia</creator><creator>Sonneveld, Pieter</creator><creator>van de Poll-Franse, Lonneke V.</creator><general>Blackwell Publishing Ltd</general><scope>BSCLL</scope><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>7X8</scope></search><sort><creationdate>201210</creationdate><title>Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: results from a population-based study using the PROFILES registry</title><author>Mols, Floortje ; Oerlemans, Simone ; Vos, Allert H. ; Koster, Ad ; Verelst, Silvia ; Sonneveld, Pieter ; van de Poll-Franse, Lonneke V.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c4071-b61a52f92e18856073b37cdee78f7876d7b0a67e0f72b64d3abfab2aaa9ef32a3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2012</creationdate><topic>Aged</topic><topic>disease-specific complaints</topic><topic>Female</topic><topic>Humans</topic><topic>Male</topic><topic>Middle Aged</topic><topic>multiple myeloma</topic><topic>Multiple Myeloma - physiopathology</topic><topic>Population Surveillance</topic><topic>Quality of Life</topic><topic>Registries</topic><topic>side effects</topic><topic>symptoms</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Mols, Floortje</creatorcontrib><creatorcontrib>Oerlemans, Simone</creatorcontrib><creatorcontrib>Vos, Allert H.</creatorcontrib><creatorcontrib>Koster, Ad</creatorcontrib><creatorcontrib>Verelst, Silvia</creatorcontrib><creatorcontrib>Sonneveld, Pieter</creatorcontrib><creatorcontrib>van de Poll-Franse, Lonneke V.</creatorcontrib><collection>Istex</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>European journal of haematology</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Mols, Floortje</au><au>Oerlemans, Simone</au><au>Vos, Allert H.</au><au>Koster, Ad</au><au>Verelst, Silvia</au><au>Sonneveld, Pieter</au><au>van de Poll-Franse, Lonneke V.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: results from a population-based study using the PROFILES registry</atitle><jtitle>European journal of haematology</jtitle><addtitle>Eur J Haematol</addtitle><date>2012-10</date><risdate>2012</risdate><volume>89</volume><issue>4</issue><spage>311</spage><epage>319</epage><pages>311-319</pages><issn>0902-4441</issn><eissn>1600-0609</eissn><abstract><![CDATA[Background This prospective population‐based study describes health‐related quality of life (HRQOL) and disease‐specific complaints of patients with multiple myeloma (MM) up to 10 yr post‐diagnosis. Methods The Eindhoven Cancer Registry was used to select all patients diagnosed with MM from 1999 to 2010. Patients with MM completed the EORTC QLQ‐C30 and EORTC QLQ‐MY20 questionnaires at baseline (n = 156; 74% response rate) and 1 yr later (n = 80). The EORTC QLQ‐C30 was also completed by an age‐ and sex‐matched normative population (n = 500). Results Patients with MM reported statistically significant and clinically relevant worse scores on all EORTC QLQ‐C30 scales (all P's at least < 0.01) compared to the norm. Also, patients with MM reported a mean decrease (e.g., worsening) between baseline and 1‐yr follow‐up scores for: quality of life (mean, 68 vs. 55, respectively, P < 0.001; 74% of patients had a deteriorated score), fatigue (33 vs. 39, P < 0.05; 50%), nausea and vomiting (6.3 vs. 13, P < 0.05; 71%), pain (33 vs. 43, P < 0.05; 59%), and dyspnea (17 vs. 33, P < 0.001; 66%). The most bothering symptoms during the past week were tingling hands/feet (32%), back pain (28%), bone aches/pain (26%), pain in arm/shoulder (19%), and feeling drowsy (18%). Also, 37% worried about their future health, 34% thought about their disease, and 21% worried about dying. Conclusion Patients with MM experience a very high symptom burden and low HRQOL. Future studies should focus on possible mechanisms that can predict low HRQOL and high symptom burden in patients with MM and should investigate optimal ways to alleviate these.]]></abstract><cop>England</cop><pub>Blackwell Publishing Ltd</pub><pmid>22762785</pmid><doi>10.1111/j.1600-0609.2012.01831.x</doi><tpages>9</tpages></addata></record>
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subjects Aged
disease-specific complaints
Female
Humans
Male
Middle Aged
multiple myeloma
Multiple Myeloma - physiopathology
Population Surveillance
Quality of Life
Registries
side effects
symptoms
title Health-related quality of life and disease-specific complaints among multiple myeloma patients up to 10 yr after diagnosis: results from a population-based study using the PROFILES registry
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