Symptom Burden, Perceived Control, and Quality of Life Among Patients Living With Multiple Myeloma

Background: New therapies for multiple myeloma (MM) have improved survival rates but often expose patients to heightened toxicities and prolonged treatment, leading to increasing complications and side effects. We evaluated the association between symptom burden, perceived control over illness, and quality of life (QoL) among a national sample of patients with MM. Methods: For this observational, cross-sectional study, we used data from the Cancer Experience Registry research initiative to examine symptom- and functioning-related concerns among 289 patients with MM across the illness trajectory. We applied hierarchical multiple linear regression analyses to explore associations between symptom burden and perceived control over illness with QoL indicators: depression, anxiety, and social satisfaction. Results: In our sample, 73% of participants with MM reported currently receiving treatment; 39% experienced relapse; 56% received 1 to 2 autologous transplants, 10% received ≥3 autologous transplants, and 4% received allogeneic and autologous transplants; 30% had not received a stem cell transplant. Average time since diagnosis was 4.4 years. The most highly endorsed concerns included eating and nutrition (61%), physical activity (59%), moving around (56%), fatigue (55%), pain (52%), and sleep (46%). Only 27% believed they had control over their disease, whereas 48% perceived having control over the physical side effects of MM. Approximately one-third of the variance in anxiety and depression and nearly two-thirds of variance in social satisfaction were explained by sociodemographic, clinical, and symptom burden variables. Perceived control over illness significantly predicted depression and anxiety, but not social satisfaction. Our results highlight substantial concern among patients with MM about physical symptoms and function. Additionally, greater symptom burden significantly accounted for poorer QoL, and lower perceived control over illness was linked to depression and anxiety. Conclusions: Patients with MM and survivors experience substantive long-term QoL issues. Together, these findings point to the critical need for comprehensive symptom management, integrated palliative care, and enhancement of social and emotional support for individuals with MM.

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Intermittent Dosing Of Gleevec Is Efficacious In Cases Of Childhood Chronic Myeloid Leukemia With Poor Compliance

Blood ◽

10.1182/blood.v122.21.5182.5182 ◽

2013 ◽

Vol 122 (21) ◽

pp. 5182-5182 ◽

Cited By ~ 1

Author(s):

Maria Moschovi ◽

Maria Adamaki ◽

Anastasia Athanasiadou ◽

Archontis Zampogiannis ◽

Natalia Tourkantoni

Keyword(s):

Quality Of Life ◽

Side Effects ◽

Chronic Myeloid Leukemia ◽

Tyrosine Kinase ◽

Myeloid Leukemia ◽

Conflicts Of Interest ◽

Poor Compliance ◽

Prolonged Treatment ◽

Wide Range

Abstract Chronic myeloid leukemia (CML) is rare in childhood (less than 5% of all childhood leukemias). The main characteristic is the Philadelphia chromosome (BCR-ABL1 positive) and the tyrosine kinase inhibitor imatinib mesylate (Gleevec) is the treatment of choice, with the target oral dose being 440 mg/m2/day asdetermined by the COG-P9973 and COG-ADVL0122 trials, while allogeneic stem cell transplantation is postponed until CML becomes refractory to the drug. We administer a treatment dose of 400mg/m2/day but we have observed high toxicity levels associated with prolonged treatment. We present a girl with CML, with persistent residual disease (MRD), even two years following diagnosis, and serious side effects (dry skin, significant hair loss, gastrointestinal discomfort and diarrhoea) that affected her quality of life. The patient was tested for polymorphisms in the tyrosine kinase and was found negative. Careful interviewing of the family revealed that the persistent MRD was due to poor compliance of the patient to the therapeutic regimen. The child was unhappy due to the side effects and refused to take her pills (Gleevec), hence the poor compliance. Therefore, taking into consideration the child’s wellbeing and psychological welfare, it was decided that she would receive the drug on alternate months (one on/one off). Gleevec was discontinued when the patient completed two years of being MRD negative. The patient remains in complete molecular remission four years after the discontinuation of Gleevec. To date, there are few reports on childhood CML so most data come from studies in adults. Even though Gleevec is currently implemented as the primary treatment method in children, there are still doubts as to whether it can result in a permanent cure and of the potential complications of long-term use in the growth and development of these children. No specific guidelines have been set on the dosage and duration of treatment with Gleevec, especially for childhood CML patients facing a potentially lifelong treatment, who might also be faced with a wide range of unknown side effects. Psychological factors should also be taken into account and special attention should be given in avoiding adverse effects that interfere with the quality of life and the psychological welfare of this extremely fragile population. Overall, in our case, despite the persistent MRD, intermittent dosing of Gleevec proved to be an efficient method both in keeping toxicity levels to a minimum and in achieving complete and continuous remission. Persistent MRD levels in this case were due to the interrupted treatment regime, i.e. due to poor compliance, and not due to additional cytogenetic abnormalities that were resistant to Gleevec. Future clinical trials in children should investigate whether intermittent dosing of the drug produces fewer side effects during the course of treatment and whether it may present a more favourable option when considering the normal growth development of the children treated for CML. Disclosures: No relevant conflicts of interest to declare.

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Variations in Multiple Myeloma Disease Presentation By Race

Blood ◽

10.1182/blood.v126.23.5618.5618 ◽

2015 ◽

Vol 126 (23) ◽

pp. 5618-5618

Author(s):

Mark A Fiala ◽

Tanya M Wildes ◽

Michael Slade ◽

Jesse Keller ◽

Keith Stockerl-Goldstein ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Myeloma ◽

Disease Burden ◽

Plasma Cells ◽

Performance Status ◽

Symptom Burden ◽

Pain Scale ◽

Black Patients ◽

Social Functioning Scale

Abstract Background: Black patients with multiple myeloma (MM) have poorer outcomes than their white counterparts. This has largely been attributed to reduced access to health care; however, little data exists comparing the disease and overall health status at MM presentation between the two races. More severe disease burden, symptom burden, or comorbidities could also explain the differences in outcome. Objective: To compare disease burden, symptom burden, and comorbidities between black and white patients with MM. Methods: Two datasets were analyzed: 1) the Multiple Myeloma Research Foundation (MMRF) CoMMpass study interim analysis 6, and 2) the Surveillance, Epidemiology, and End Results-Medicare Health Outcomes Survey (SEER-MHOS) 2015 dataset (SEER years 1973-2011; MHOS years 1998-2013). The CoMMpass dataset included 625 patients who completed the EORTC QLQ-C30 and QLQ-MY20 at MM diagnosis. The SEER-MHOS dataset included 377 patients who completed the HOS survey the year of or year prior to MM diagnosis. All patients identified as a race other than white or black/African American were excluded. Data was analyzed using SPSS 21. Categorical variables were compared using χ2, continuous with the Mann-Whitney U test. Results: CoMMpass: 585 patients were eligible for analysis. 477 (82%) were white, 108 (19%) were black. Whites and blacks were similar in median age, but a significantly higher percentage of white patients were female (p=0.027). Overall, black patients were more likely to be stage III (p=0.041), have higher LDH (p=0.006) and creatinine (p=0.001), and lower hemoglobin (p<0.001), but were more likely to have CD117+ MM cells (p=0.049). While quality of life measures were similar between the two races, white race was associated with better performance status (p=0.021). Results are summarized in Table 1. SEER-MHOS: 275 patients were eligible for analysis. 234 (85%) were white, 41 (15%) were black. Whites and blacks were similar in median age and sex distribution; there were no significant (p<0.05) differences in quality of life measures or comorbidities between the two races. Results are summarized in Table 2. Conclusions: The presentation of MM was similar between blacks and whites, but black patients tended to have a higher disease burden than whites. Despite this, both races reported similar symptom burden. Further studies are required to determine if higher disease burden account for part of the outcome disparities seen between the two races. Table 1. CoMMpass Whiten= 477 Black n = 108 p Demographics Age in years 65 63 NS Female 63% 49% 0.027 Disease Burden ISS Stage 0.041 Stage I/II 71% 61% Stage III 29% 40% Heavy Chain NS IgG 78% 81% IgA 22% 19% Light Chain NS Kappa 60% 73% Lambda 38% 27% Biclonal 2% 0% Serum M-Protein g/dL 2.9 2.5 NS LDH ukat/L 2.8 3.0 0.006 Bone Marrow Plasma Cells* 9% 9% NS Circulating Plasma Cells* 0% 0% NS Calcium mmol/L 2.4 2.4 NS Creatinine umol/L 93 111 0.001 Hgb mmol/L 6.7 6.0 <0.001 Platelets x109/L 213 207 NS Bone Lesions 56% 51% NS Molecular Characteristics Abnormal Karyotype 43% 39% NS Deletion 13 31% 32% NS Deletion 17p 20% 16% NS Translocation 11;14 19% 14% NS Translocation 4;14 10% 8% NS Phenotype** CD13+ 22% 27% NS CD20+ 17% 10% NS CD33+ 27% 29% NS CD52+ 12% 10% NS CD56+ 78% 79% NS CD117+ 56% 67% 0.049 FGFR3+ 15% 13% NS Symptom Burden/Quality of Life ECOG Performance Status 0.021 0-1 87% 78% 2-4 13% 22% Global Health Scale 58 66 NS Physical Functioning Scale 80 73 NS Cognitive Functioning Scale 83 83 NS Emotional Functioning Scale 75 83 NS Social Functioning Scale 66 66 NS Role Functioning Scale 66 50 NS Disease Symptom Scale 22 27 NS Fatigue Scale 33 33 NS Pain Scale 33 33 NS Median presented unless specified *- CD38+/CD138+ by flow cytometry **- performed on CD38+/CD138+ bone marrow cells Table 2. SEER-MHOS Whiten= 234 Black n = 41 p Demographics Age in years 77 75 NS Female 46% 41% NS Symptom Burden/Quality of Life General Health Scale 54 59 NS Physical Functioning Scale 58 70 NS Emotional Well-Being Scale 80 82 NS Social Functioning Scale 75 88 NS Role Limitation Physical Scale 25 50 NS Role Limitation Emotional Scale 100 100 NS Energy/Fatigue Scale 50 55 NS Pain Scale 51 57 NS Comorbidities Prior Malignancy 21% 10% NS Hypertension 60% 68% NS Coronary Artery Disease 16% 8% NS Congestive Heart Failure 7% 0% NS Myocardial Infarction 12% 10% NS Cerebral Vascular Accident 10% 10% NS Chronic Obstructive Pulmonary Disease 13% 12% NS Diabetes 81% 78% NS Obesity 20% 11% NS Median presented unless specified Disclosures Vij: Takeda, Onyx: Research Funding; Celgene, Onyx, Takeda, Novartis, BMS, Sanofi, Janssen, Merck: Consultancy.

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How Should We Treat Elderly Newly Diagnosed Multiple Myeloma Patients?

European Oncology & Haematology ◽

10.17925/ohr.2015.11.01.50 ◽

2015 ◽

Vol 11 (1) ◽

pp. 50

Author(s):

María-Victoria Mateos ◽

Keyword(s):

Quality Of Life ◽

Multiple Myeloma ◽

Elderly Patients ◽

Proteasome Inhibitors ◽

Progression Free Survival ◽

Standard Of Care ◽

Prolonged Treatment ◽

Term Therapy ◽

Close Monitoring

Multiple myeloma is the second most frequent hematologic disease, which usually affects patients over 65 years of age. Treatment goals for these non-transplant-eligible patients should be to prolong survival by achieving the best response, while ensuring quality of life. Melphalan plus prednisone has been the classic backbone to which proteasome inhibitors and immunomodulatory drugs were added and, recently, lenalidomide plus low-dose dexamethasone emerged as a new standard of care, free of alkylator, and also as a backbone to which second-generation proteasome inhibitors are being added. Monoclonal antibodies will take part of these treatments regimens in the future. Prolonged treatment in elderly patients also improves the quality and duration of clinical responses, extending time to progression and progression-free survival; however, the optimal scheme, appropriate doses, and duration of long-term therapy have not yet been fully determined. Finally, elderly patients under treatment require close monitoring and individualized, dose-modified regimens to improve tolerability and treatment efficacy, while maintaining their quality of life.

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Prevalence of high symptom burden and its impact on functioning and quality of life in patients with multiple myeloma 3-9 months following autologous transplant.

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.15_suppl.e19580 ◽

2014 ◽

Vol 32 (15_suppl) ◽

pp. e19580-e19580 ◽

Cited By ~ 2

Author(s):

Qiuling Shi ◽

Xin Shelley Wang ◽

Nina Shah ◽

Robert Z. Orlowski ◽

Muzaffar H. Qazilbash ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Myeloma ◽

Symptom Burden ◽

Autologous Transplant

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Do drugs that offer PFS or modest OS benefits improve quality of life in patients with advanced cancer?

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.5_suppl.223 ◽

2017 ◽

Vol 35 (5_suppl) ◽

pp. 223-223

Author(s):

Lesley Fallowfield ◽

Susan L. Catt ◽

Shirley F May ◽

Valerie M Shilling ◽

Lucy A Matthews ◽

...

Keyword(s):

Quality Of Life ◽

Side Effects ◽

Symptom Burden ◽

Cancer Control ◽

Progression Free Survival ◽

Well Being ◽

Treatment Side Effects ◽

Time Interaction ◽

Group B

223 Background: Patients value quality of life (QoL) not just quantity of life but QoL data from measures in advanced disease are sparse for drugs with only progression-free survival (PFS) or modest overall survival (OS) benefits. We examined if stabilisation of metastatic disease and/or disease symptom burden were worth treatment side effects in the AVALPROFS study. Methods: Patients with metastatic cancers starting drugs with PFS or modest OS benefits were interviewed at baseline and following 6 weeks of treatment. Further interviews were conducted at progression or if treatment was stopped for toxicity. Interviews comprised trade-off type assessments exploring worthwhileness of treatment compared with side effects.Patients completed FACT tumor and treatment specific questionnaires monthly for 6 months. Global QoL was measured across time and between patients who died or progressed on study (A), remained on study (B) or withdrew from study due to toxicity (C). Results: 90/120 (75%) eligible patients participated. 31/90 (21%) patients died or progressed within 6 months of study entry (Group A). 12 patients withdrew due to toxicity (Group B) and 47 patients stayed on treatment for 6 months (Group C). At first interview 43/90 (48%) patients had started treatment and by 6 weeks (66/69, 96%) were experiencing side effects. At both interviews patients were significantly less inclined to feel that benefits of cancer control were worthwhile as the possible side effect severity increased (X2=75.6004. p< 0.00001; 50.6896 p< 0.00001 respectively). There was an effect of patient group on general QoL (F=4.978; p = 0.007) but no group by time interaction (F=0.419; p = 0.888). Also, a significant overall group effect (A vs. C) for emotional (F=6.583, p = 0.011) and functional well-being (F=5.138, p = 0.024). More patients in Group C had stable/improved QoL over time. Conclusions: Over 6 months, QoL was stable in those patients receiving drugs with PFS only or minimal OS who could tolerate treatment side effects. As severity of side effects increased, patients were less likely to feel that treatment was worthwhile but a proportion were still willing to accept these for a relatively short increase in the time drugs controlled the cancer.

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Towards a better understanding of the relationship between side effects of analgesia and quality of life in patients with multiple myeloma

Supportive Care in Cancer ◽

10.1007/s00520-015-2868-5 ◽

2015 ◽

Vol 24 (1) ◽

pp. 9-10 ◽

Cited By ~ 2

Author(s):

Pasquale Niscola ◽

Agostina Siniscalchi ◽

Andrea Tendas ◽

Paolo de Fabritiis ◽

Tommaso Caravita ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Myeloma ◽

Side Effects ◽

The Relationship

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Symptom burden and palliative care for patients with multiple myeloma: Cancer Experience Registry findings.

Journal of Clinical Oncology ◽

10.1200/jco.2015.33.29_suppl.81 ◽

2015 ◽

Vol 33 (29_suppl) ◽

pp. 81-81 ◽

Cited By ~ 1

Author(s):

Joanne S. Buzaglo ◽

Melissa F Miller ◽

Clare Karten ◽

Margaret Longacre ◽

Thomas William LeBlanc

Keyword(s):

Quality Of Life ◽

Multiple Myeloma ◽

Palliative Care ◽

Sleep Disturbance ◽

Sleep Disturbances ◽

Symptom Burden ◽

Outreach Program ◽

Cancer Support ◽

Cancer Experience

81 Background: Multiple myeloma (MM) patients are living longer with treatment advances yet remain challenged by complications and adverse treatment effects. Concurrent oncology/palliative care can improve symptom burden and quality of life for cancer patients, but the benefits of concurrent care for the MM symptom burden is not well described. Methods: From July 2013-2014, the Cancer Support Community (CSC) registered 495 MM patients to the Cancer Experience Registry: MM, an online initiative to study and raise awareness about MM’s psychosocial impact. Registrants were recruited through an outreach program including the CSC and The Leukemia & Lymphoma Society networks of communities and resources. 331 US-based registrants completed surveys about their MM history, treatment, and symptoms. Results: Median respondent age was 64 years; 54% were female, 87% Caucasian. Median time since diagnosis was 4.5 years, and 40% reported experiencing a relapse. Several symptoms interfered (quite a bit or very much) with respondents’ daily life: fatigue (40%), bone pain (22%), peripheral neuropathy (22%) sleep disturbance (21%), GI toxicity (16%), and mood swings (10%). The daily effects of fatigue, pain, sleep disturbance and mood swings were associated (p < 0.05) with distress. 36% did not report all symptoms and side effects (SEs) to their health care team (HCT). The most common reason was “I don’t think anything can be done about these problems.” More than half (58%) reported sleep disturbances related to steroids, and 46% experienced weight gain, 41% mood swings, and 39% edema. One-third (34%) reported their HCT never told them steroids could cause this. 85% felt their HCT prepared them (somewhat, quite a bit, or very much) to manage SEs of MM treatment, yet half (50%) felt little or no control over the physical SEs of MM and its treatment. Conclusions: Patients with MM experience significant symptom burden that interferes with daily living but underreport symptoms to the HCT. Many symptoms are amenable to interventions by palliative care specialists, which may improve MM patients’ quality of life. These findings suggest the need for more integration of palliative care services with oncology and other care for MM patients.

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Symptom burden and health-related quality of life impacts of smoldering multiple myeloma: the patient perspective

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-020-00253-2 ◽

2020 ◽

Vol 4 (1) ◽

Author(s):

Milenka Jean-Baptiste ◽

Katharine S. Gries ◽

William R. Lenderking ◽

John Fastenau

Keyword(s):

Quality Of Life ◽

Multiple Myeloma ◽

Symptom Burden ◽

Health Related Quality ◽

Related Quality ◽

Eortc Qlq C30 ◽

Health Related ◽

Eortc Qlq ◽

Study Participants

Abstract Background Smoldering multiple myeloma (SMM) is an early form of multiple myeloma (MM). SMM is typically considered asymptomatic, and research on how it affects health-related quality of life (HRQoL) is limited. This study assessed the symptoms and HRQoL of patients with SMM and those who progressed from SMM to MM and evaluated the content validity of two patient-reported outcome instruments (EORTC QLQ-C30 and nine items from the EORTC QLQ-MY20) for use in SMM clinical trials. To address these objectives, concept elicitation and cognitive interviews were conducted with SMM patients and recently diagnosed MM patients. Results Fifteen adult SMM and six adult MM participants with a prior SMM diagnosis were interviewed. On average, SMM study participants were 61 years old (46.0–78.0), 11 (73%) were female, and diagnosed 2.6 (±2.0) years ago. Each participant had experienced at least one symptom, most commonly tiredness/fatigue, weakness, and pain. The most common HRQoL impacts were emotional and physical. SMM study participants demonstrated good understanding of both the EORTC QLQ-C30 and EORTC QLQ-MY20 subscales and found them relevant to their SMM health state. The average age of MM participants was 53 years old (39.0–62.0); 5 (83%) were female and diagnosed 1.9 years ago (±2.1). MM participants most commonly reported tiredness, weakness, constipation, shortness of breath, and dry mouth as occurring when they progressed from SMM to MM. Conclusions Although previously described as asymptomatic, these SMM participants reported experiencing symptoms that affected their lives. Additionally, the EORTC subscales measured symptoms SMM patients experienced. The participants with MM reported that the symptom burden and HRQoL impacts increased when diagnosed with MM. These findings suggest the need for increased surveillance of symptoms within the SMM population and further suggest that the EORTC subscales can be used to assess symptoms and impacts in both the SMM and MM populations.

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How should we treat newly diagnosed multiple myeloma patients?

Hematology ◽

10.1182/asheducation-2013.1.488 ◽

2013 ◽

Vol 2013 (1) ◽

pp. 488-495 ◽

Cited By ~ 23

Author(s):

María-Victoria Mateos ◽

Jesús F. San Miguel

Keyword(s):

Quality Of Life ◽

Multiple Myeloma ◽

Elderly Patients ◽

Alkylating Agents ◽

Treatment Options ◽

Prolonged Treatment ◽

Term Therapy ◽

Close Monitoring ◽

Newly Diagnosed

AbstractMultiple myeloma (MM) is the second most frequent hematological disease. Two-thirds of newly diagnosed MM patients are more than 65 years of age. Elsewhere in this issue, McCarthy et al discuss the treatment of transplantation candidates; this chapter focuses on the data available concerning therapy for non-transplantation-eligible MM patients. Treatment goals for these non-transplantation-eligible patients should be to prolong survival by achieving the best possible response while ensuring quality of life. Until recently, treatment options were limited to alkylators, but new up-front treatment combinations based on novel agents (proteasome inhibitors and immunomodulatory drugs) plus alkylating agents have significantly improved outcomes. Other nonalkylator induction regimens are also available and provide a novel backbone that may be combined with novel second- and third-generation drugs. Phase 3 data indicate that maintenance therapy or prolonged treatment in elderly patients also improves the quality and duration of clinical responses, extending time to progression and progression-free survival; however, the optimal scheme, appropriate doses, and duration of long-term therapy have not yet been fully determined. The potential for novel treatment regimens to improve the adverse prognosis associated with high-risk cytogenetic profiles also requires further research. In summary, although we have probably doubled the survival of elderly patients, this group requires close monitoring and individualized, dose-modified regimens to improve tolerability and treatment efficacy while maintaining their quality of life.

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