-Author name in bold denotes the presenting author
-Asterisk * with author name denotes a Non-ASH member
Clinically Relevant Abstract denotes an abstract that is clinically relevant.

PhD Trainee denotes that this is a recommended PHD Trainee Session.

Ticketed Session denotes that this is a ticketed session.

3335 Assessment of Multiple Myeloma-Related Burden on Caregivers – a Portuguese National Study

Program: Oral and Poster Abstracts
Session: 652. Multiple Myeloma: Clinical and Epidemiological: Poster II
Hematology Disease Topics & Pathways:
Research, adult, Clinical Practice (Health Services and Quality), epidemiology, Clinical Research, Plasma Cell Disorders, health disparities research, Diseases, Lymphoid Malignancies, Study Population, Human
Sunday, December 10, 2023, 6:00 PM-8:00 PM

Carlos BT Costa, MD1*, Manuel Neves, MD2*, Adriana Isabel Roque, MD, BSc3,4*, Ana Bela Sarmento-Ribeiro, MD, PhD5,6,7,8,9*, Rita Gerivaz, MD10*, Ana Tomé, MD11*, Sofia Afonso, MD12,13*, Joana Saraiva Santos, MD14,15*, Celina Afonso, MD16*, Ana VRJP Afonso, MD16*, José Freitas, MD17*, Inês Ramos, MD17*, Patrícia Sousa, MD18,19*, Paula César, MD18*, Teresa Garrido, MD18*, Dina Rochate, MD20*, Maria Pedro Silveira, MD21,22*, Carolina Pestana, MsC23*, Catarina Geraldes, MD, PhD5,6,7,24,25*, Rui Bergantim, MD, PhD26,27,28,29* and Cristina João, MD, MsC, PhD23,30,31*

1Hematology Unit, Hospital CUF Tejo, Lisbon, Portugal
2Hemato-Oncology Unit, Fundação Champalimaud, Lisbon, Portugal
3Clinical Hematolology Unit, Centro Hospitalar e Universitário de Coimbra, Coimbra, Portugal
4Institute of Physiology, Faculty of Medicine, University of Coimbra, Coimbra, Portugal
5Coimbra Institute for Clinical and Biomedical Research (iCBR)—Group of Environmental Genetics of Oncobiology (CIMAGO), Faculty of Medicine, University of Coimbra, Coimbra, Portugal
6Center for Innovative Biomedicine and Biotechnology (CIBB), University of Coimbra, Coimbra, Portugal
7Clinical Academic Center of Coimbra (CACC), Coimbra, Portugal
8Hematology Service, Centro Hospitalar e Universitário de Coimbra (CHUC), Coimbra, Portugal
9University Clinics of Hematology and Oncology and Laboratory of Oncobiology and Hematology (LOH), Faculty of Medicine, Coimbra, Portugal
10Hospital Garcia de Orta, Serviço de Hematologia, Almada, Portugal
11Serviço Hematologia Clínica, Hospital Garcia de Orta, Lisbon, Portugal
12Serviço de Hematologia Clínica, Centro Hospitalar Universitário Cova da Beira, Covilhã, Portugal
13Faculdade de Ciências da Saúde, Universidade da Beira Interior, Covilhã, Portugal
14Departamento de Hematologia, Centro Hospitalar de Lisboa Central, Lisbon, Portugal
15Serviço de Hematologia, [formerly at] Centro Hospitalar de Setúbal, Setúbal, Portugal
16Centro Hospitalar de Lisboa Ocidental, Serviço de Hematologia, Lisbon, Portugal
17Serviço Onco-Hematologia, Instituto Português Oncologia Porto, Porto, Portugal
18Portuguese Oncology Institute of Coimbra, Hematology Department, Coimbra, Portugal
19Hematology Department, Centro Hospitalar Universitário Cova da Beira, Covilhã, Portugal
20Serviço de Hematologia, Hospital do Divino Espírito Santo de Ponta Delgada EPER, Ponta Delgada, Portugal
21Hematologia Clínica. Clínica de Oncologia e Radioterapia, [formerly at] Centro Clínico SAMS, Lisboa, Portugal
22Serviço de Imuno-Hemoterapia, Hospital Prof. Doutor Fernando Fonseca, Amadora, Portugal
23Myeloma Lymphoma Research Group, Champalimaud Foundation, Lisbon, Portugal
24Clinical Hematology Department, Coimbra University Hospitals, Coimbra, Portugal
25University Clinics of Hematology and Oncology and Laboratory of Oncobiology and Hematology (LOH), Faculty of Medicine, University of Coimbra, Coimbra, Portugal
26Hospital S. João, Clinical Hematology, Porto, Portugal
27i3S-Instituto de Investigação e Inovação em Saúde, Universidade do Porto, Porto, Portugal
28Cancer Drug Resistance Group, IPATIMUP-Institute of Molecular Pathology and Immunology, Universidade do Porto, Porto, Portugal
29Clinical Hematology, Faculty of Medicine, Universidade do Porto, Porto, Portugal
30Hemato-Oncology Unit, Champalimaud Foundation, Lisbon, Portugal
31NOVA Medical School, Universidade Nova de Lisboa, Lisbon, Portugal


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.


CarMMa (“Characterization of patients with Multiple Myeloma treated in Portuguese Hospitals and of their caregivers”) 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 “Low” (0-25 points), “Moderate” (26-50 points), “High” (51-75 points), and “Extreme” (≥76 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.


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.

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 “High” or “Extreme” 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).

Discussion and Conclusions:

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.

Both first and second authors contributed equally for this publication.

Disclosures: Neves: Janssen: Consultancy, Speakers Bureau; BMS: Consultancy; Takeda: Consultancy; GSK: Consultancy; Amgen: Consultancy. Roque: Prothena: Consultancy; Takeda: Consultancy, Speakers Bureau; Roche: Consultancy, Speakers Bureau; Janssen: Speakers Bureau; Sanofi: Speakers Bureau; Abbvie: Speakers Bureau; Amgen: Speakers Bureau. Santos: Janssen: Consultancy; Amgen: Speakers Bureau; Novartis: Speakers Bureau; Abbvie: Consultancy. Afonso: Janssen: Consultancy; Gilead: Consultancy; Takeda: Consultancy. Geraldes: BMS: Consultancy, Speakers Bureau; Takeda: Consultancy, Speakers Bureau; Amgen: Consultancy, Speakers Bureau; Janssen: Consultancy, Speakers Bureau; Gilead: Consultancy, Speakers Bureau; Sanofi: Consultancy, Speakers Bureau; Pfizer: Consultancy, Speakers Bureau. Bergantim: Janssen: Consultancy, Speakers Bureau; BMS: Consultancy; Takeda: Speakers Bureau; Amgen: Consultancy, Speakers Bureau. João: Janssen: Consultancy, Speakers Bureau; Takeda: Consultancy; Amgen: Consultancy; GSK: Consultancy; Pfizer: Consultancy; SAnofi: Speakers Bureau.

*signifies non-member of ASH