Assessment of Multiple Myeloma-Related Burden on Caregivers - a Portuguese National Study
Authors: Costa Carlos BT , Neves Manuel , Roque Adriana Isabel , Sarmento-Ribeiro Ana Bela , Gerivaz Rita , Tomé Ana , Afonso Sofia , Santos Joana Saraiva , Afonso Celina , Afonso Ana VRJP , Freitas José , Ramos Inês , Sousa Patrícia , César Paula , Garrido Teresa , Rochate Dina , Silveira Maria Pedro , Pestana Carolina , Geraldes Catarina , Bergantim Rui , João Cristina 
Published: December 2023

Introduction
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.
Methods
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.
Results
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 &lt; 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.