{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,20]],"date-time":"2025-07-20T04:08:00Z","timestamp":1752984480819},"reference-count":0,"publisher":"American Society of Hematology","issue":"Supplement 1","content-domain":{"domain":["ashpublications.org"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2023,11,2]]},"abstract":"\n Introduction<\/jats:p>\n Multiple Myeloma (MM) is an incurable hematological cancer that decreases the quality of life of patients but also that of their providers. The disease course is linked with psychological stress of caregivers, but the data on the association between MM characteristics, the management of the disease, and the caregivers' burden is very scarce.<\/jats:p>\n Methods<\/jats:p>\n CarMMa (\u201cCharacterization of patients with Multiple Myeloma treated in Portuguese Hospitals and of their caregivers\u201d) is an ongoing multicentric, national, cross-sectional study which gathered data on MM patients, their disease, and their caregivers. QASCI, a Portuguese questionnaire for the evaluation burden of caregiving, was used to assess caregivers of patients with MM. The seven dimensions of burden (Emotional Burden; Personal Life Implications; Financial Overload; Reactions to Demands; Mechanisms of Efficacy and Control; Familiar Support; and Satisfaction with the Role) were graded on a 5-point Linkert scale. The overall burden for each caregiver was obtained and further categorized into \u201cLow\u201d (0-25 points), \u201cModerate\u201d (26-50 points), \u201cHigh\u201d (51-75 points), and \u201cExtreme\u201d (\u226576 points), according to the pre-set physicians' perception of burden. Pearson's chi-square test was used to assess the existence of an association between each of the variables of interest and each of the QASCI scales. The significance level is 0.050. The significance values were adjusted by Bonferroni correction for various tests.<\/jats:p>\n Results<\/jats:p>\n From July 2022 until March 2023, we enrolled 313 MM patients from 11 Portuguese centers: 63.2% were newly diagnosed, 23.9% had 2 lines of treatment and 12.7% had 3 or more lines of therapy. The patients' median age was 70 years, PS was 0-1 in 56.5%; ISS 2-3 in 64.8%. Patients with lytic lesions and extramedullary disease were 72.8% and 15.6%, respectively.<\/jats:p>\n Fifty four percent of the patients identified one significant caregiver, with a median age of 59.4 years; 74% were women. The median overall score for burden of caregiving was 23: 100 (59,2%) caregivers reported a low burden, 60 (35,5%) moderate burden and 7 (4,1%) high burden. Women tended to report a higher burden than men (median 23.59 vs 18.8, p=0.057 ). Among the 7 dimensions evaluated, the rate of \u201cHigh\u201d or \u201cExtreme\u201d burden was higher for Personal Life Implications (19.9%), Familial Support (15.8%) and Mechanisms of Efficacy and Control (14.4%); it was lower for Reaction to Demands (3.6%). The burden was significantly higher in caregivers of patients with 2 or more lines of treatment for the dimension of Personal Life Implications (p=0.042). Financial Overload was significantly higher for caregivers of patients < 60 years of age (p=0.02), and the score for Mechanisms for Efficacy and Control was higher in patients with ISS II-II (p=0.05).<\/jats:p>\n Discussion and Conclusions:<\/jats:p>\n Despite most caregivers reporting an overall low burden, this study shows a higher score for women and a significant relation between higher burden of caregiving and later lines of treatment and higher disease risk scores. Specific dimensions, such as personal life and familial dynamics, as well as the financial aspect in professionally active caregivers, display a higher impact and should be addressed specifically when dealing with MM patients and their caregivers. This Portuguese multicenter national study contributes to the understanding of the social and economic impact of MM in caregivers.<\/jats:p>\n Both first and second authors contributed equally for this publication.<\/jats:p>","DOI":"10.1182\/blood-2023-182698","type":"journal-article","created":{"date-parts":[[2023,12,1]],"date-time":"2023-12-01T15:12:50Z","timestamp":1701443570000},"page":"3335-3335","update-policy":"http:\/\/dx.doi.org\/10.1182\/blood.2019cm0000","source":"Crossref","is-referenced-by-count":2,"title":["Assessment of Multiple Myeloma-Related Burden on Caregivers - a Portuguese National Study"],"prefix":"10.1182","volume":"142","author":[{"given":"Carlos BT","family":"Costa","sequence":"first","affiliation":[{"name":"1Hematology Unit, Hospital CUF Tejo, Lisbon, Portugal"}]},{"given":"Manuel","family":"Neves","sequence":"additional","affiliation":[{"name":"2Hemato-Oncology Unit, Funda\u00e7\u00e3o Champalimaud, Lisbon, Portugal"}]},{"given":"Adriana Isabel","family":"Roque","sequence":"additional","affiliation":[{"name":"3Clinical Hematolology Unit, Centro Hospitalar e Universit\u00e1rio de Coimbra, Coimbra, Portugal"},{"name":"4Institute of Physiology, Faculty of Medicine, University of Coimbra, Coimbra, Portugal"}]},{"given":"Ana Bela","family":"Sarmento-Ribeiro","sequence":"additional","affiliation":[{"name":"5Coimbra Institute for Clinical and Biomedical Research (iCBR)-Group of Environmental Genetics of Oncobiology (CIMAGO), Faculty of Medicine, University of Coimbra, Coimbra, Portugal"},{"name":"6Center for Innovative Biomedicine and Biotechnology (CIBB), University of Coimbra, Coimbra, Portugal"},{"name":"7Clinical Academic Center of Coimbra (CACC), Coimbra, Portugal"},{"name":"8Hematology Service, Centro Hospitalar e Universit\u00e1rio de Coimbra (CHUC), Coimbra, Portugal"},{"name":"9University Clinics of Hematology and Oncology and Laboratory of Oncobiology and Hematology (LOH), Faculty of Medicine, Coimbra, Portugal"}]},{"given":"Rita","family":"Gerivaz","sequence":"additional","affiliation":[{"name":"10Hospital Garcia de Orta, Servi\u00e7o de Hematologia, Almada, Portugal"}]},{"given":"Ana","family":"Tom\u00e9","sequence":"additional","affiliation":[{"name":"11Servi\u00e7o Hematologia Cl\u00ednica, Hospital Garcia de Orta, Lisbon, Portugal"}]},{"given":"Sofia","family":"Afonso","sequence":"additional","affiliation":[{"name":"12Servi\u00e7o de Hematologia Cl\u00ednica, Centro Hospitalar Universit\u00e1rio Cova da Beira, Covilh\u00e3, Portugal"},{"name":"13Faculdade de Ci\u00eancias da Sa\u00fade, Universidade da Beira Interior, Covilh\u00e3, Portugal"}]},{"given":"Joana Saraiva","family":"Santos","sequence":"additional","affiliation":[{"name":"14Departamento de Hematologia, Centro Hospitalar de Lisboa Central, Lisbon, Portugal"},{"name":"15Servi\u00e7o de Hematologia, [formerly at] Centro Hospitalar de Set\u00fabal, Set\u00fabal, Portugal"}]},{"given":"Celina","family":"Afonso","sequence":"additional","affiliation":[{"name":"16Centro Hospitalar de Lisboa Ocidental, Servi\u00e7o de Hematologia, Lisbon, Portugal"}]},{"given":"Ana VRJP","family":"Afonso","sequence":"additional","affiliation":[{"name":"16Centro Hospitalar de Lisboa Ocidental, Servi\u00e7o de Hematologia, Lisbon, Portugal"}]},{"given":"Jos\u00e9","family":"Freitas","sequence":"additional","affiliation":[{"name":"17Servi\u00e7o Onco-Hematologia, Instituto Portugu\u00eas Oncologia Porto, Porto, Portugal"}]},{"given":"In\u00eas","family":"Ramos","sequence":"additional","affiliation":[{"name":"17Servi\u00e7o Onco-Hematologia, Instituto Portugu\u00eas Oncologia Porto, Porto, Portugal"}]},{"given":"Patr\u00edcia","family":"Sousa","sequence":"additional","affiliation":[{"name":"18Portuguese Oncology Institute of Coimbra, Hematology Department, Coimbra, Portugal"},{"name":"19Hematology Department, Centro Hospitalar Universit\u00e1rio Cova da Beira, Covilh\u00e3, Portugal"}]},{"given":"Paula","family":"C\u00e9sar","sequence":"additional","affiliation":[{"name":"18Portuguese Oncology Institute of Coimbra, Hematology Department, Coimbra, Portugal"}]},{"given":"Teresa","family":"Garrido","sequence":"additional","affiliation":[{"name":"18Portuguese Oncology Institute of Coimbra, Hematology Department, Coimbra, Portugal"}]},{"given":"Dina","family":"Rochate","sequence":"additional","affiliation":[{"name":"20Servi\u00e7o de Hematologia, Hospital do Divino Esp\u00edrito Santo de Ponta Delgada EPER, Ponta Delgada, Portugal"}]},{"given":"Maria Pedro","family":"Silveira","sequence":"additional","affiliation":[{"name":"21Hematologia Cl\u00ednica. Cl\u00ednica de Oncologia e Radioterapia, [formerly at] Centro Cl\u00ednico SAMS, Lisboa, Portugal"},{"name":"22Servi\u00e7o de Imuno-Hemoterapia, Hospital Prof. Doutor Fernando Fonseca, Amadora, Portugal"}]},{"given":"Carolina","family":"Pestana","sequence":"additional","affiliation":[{"name":"23Myeloma Lymphoma Research Group, Champalimaud Foundation, Lisbon, Portugal"}]},{"given":"Catarina","family":"Geraldes","sequence":"additional","affiliation":[{"name":"24Clinical Hematology Department, Coimbra University Hospitals, Coimbra, Portugal"},{"name":"25University Clinics of Hematology and Oncology and Laboratory of Oncobiology and Hematology (LOH), Faculty of Medicine, University of Coimbra, Coimbra, Portugal"},{"name":"5Coimbra Institute for Clinical and Biomedical Research (iCBR)-Group of Environmental Genetics of Oncobiology (CIMAGO), Faculty of Medicine, University of Coimbra, Coimbra, Portugal"},{"name":"6Center for Innovative Biomedicine and Biotechnology (CIBB), University of Coimbra, Coimbra, Portugal"},{"name":"7Clinical Academic Center of Coimbra (CACC), Coimbra, Portugal"}]},{"given":"Rui","family":"Bergantim","sequence":"additional","affiliation":[{"name":"26Hospital S. Jo\u00e3o, Clinical Hematology, Porto, Portugal"},{"name":"27i3S-Instituto de Investiga\u00e7\u00e3o e Inova\u00e7\u00e3o em Sa\u00fade, Universidade do Porto, Porto, Portugal"},{"name":"28Cancer Drug Resistance Group, IPATIMUP-Institute of Molecular Pathology and Immunology, Universidade do Porto, Porto, Portugal"},{"name":"29Clinical Hematology, Faculty of Medicine, Universidade do Porto, Porto, Portugal"}]},{"given":"Cristina","family":"Jo\u00e3o","sequence":"additional","affiliation":[{"name":"30Hemato-Oncology Unit, Champalimaud Foundation, Lisbon, Portugal"},{"name":"23Myeloma Lymphoma Research Group, Champalimaud Foundation, Lisbon, Portugal"},{"name":"31NOVA Medical School, Universidade Nova de Lisboa, Lisbon, Portugal"}]}],"member":"234","container-title":["Blood"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/ashpublications.org\/blood\/article-pdf\/142\/Supplement%201\/3335\/2198957\/blood-9937-main.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/ashpublications.org\/blood\/article-pdf\/142\/Supplement%201\/3335\/2198957\/blood-9937-main.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,5,15]],"date-time":"2024-05-15T00:02:07Z","timestamp":1715731327000},"score":1,"resource":{"primary":{"URL":"https:\/\/ashpublications.org\/blood\/article\/142\/Supplement%201\/3335\/498920\/Assessment-of-Multiple-Myeloma-Related-Burden-on"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,11,2]]},"references-count":0,"journal-issue":{"issue":"Supplement 1","published-print":{"date-parts":[[2023,11,2]]}},"URL":"https:\/\/doi.org\/10.1182\/blood-2023-182698","relation":{},"ISSN":["0006-4971","1528-0020"],"issn-type":[{"value":"0006-4971","type":"print"},{"value":"1528-0020","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,11,2]]}}}