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

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.

Download Full-text

The effectiveness of hope-fostering interventions in palliative care: A systematic review and meta-analysis

Palliative Medicine ◽

10.1177/0269216321994728 ◽

2021 ◽

pp. 026921632199472

Author(s):

Natalia Salamanca-Balen ◽

Thomas V Merluzzi ◽

Man Chen

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Palliative Care ◽

Meta Analysis ◽

Symptom Burden ◽

Well Being ◽

Medium Effect ◽

Spiritual Well Being ◽

Quasi Experimental

Background: The concept of hope is an important theme in chronic illness and palliative care and has been associated with increased psycho-spiritual well-being and quality of life. Psycho-spiritual interventions have been described in this population, but no systematic review of hope-enhancing interventions or hopelessness-reducing interventions has been conducted for persons with palliative care diseases. Aim: To describe and assess the effectiveness of interventions in palliative care that measure hope and/or hopelessness as an outcome. Design: This systematic review and meta-analysis was pre-registered (Prospero ID: CRD42019119956). Data sources: Electronic databases, journals, and references were searched. We used the Cochrane criteria to assess the risk of bias within studies. Results: Thirty-five studies (24 randomized controlled trials, 5 quasi-experimental, 6 pre-post studies) involving a total of 3296 palliative care patients were included. Compared with usual/standard cancer care alone, interventions significantly increased hope levels at a medium effect size ( g = 0.61, 95% confidence interval (CI) = 0.28–0.93) but did not significantly reduce hopelessness ( g = −0.08, 95% CI = −0.18 to 0.02). It was found that interventions significantly increase spirituality ( g = 0.70, 95% CI = 0.02–1.37) and decrease depression ( g = −0.29, 95% CI = −0.51 to −0.07), but had no significant effect over anxiety, quality of life, and symptom burden. Overall, quality of evidence across the included studies was rated as low. Conclusions: Evidence suggests that interventions can be effective in increasing hope in palliative care patients.

Download Full-text

Sleep disturbance and quality of life in Rheumatoid Arthritis: a prospective mobile health study (Preprint)

10.2196/preprints.32825 ◽

2021 ◽

Author(s):

John McBeth ◽

William G Dixon ◽

Susan Mary Moore ◽

Bruce Hellman ◽

Ben James ◽

...

Keyword(s):

Quality Of Life ◽

Rheumatoid Arthritis ◽

Sleep Disturbance ◽

Mobile Health ◽

Sleep Disturbances ◽

Total Sleep Time ◽

Sleep Onset ◽

Sleep Time ◽

Domain Scores

BACKGROUND Sleep disturbance and poor health related quality of life (HRQoL) are common in people with rheumatoid arthritis (RA). Sleep disturbances, such as less total sleep time, more waking periods after sleep onset, and higher levels of non-restorative sleep, may be a driver of HRQoL. However, understanding if these sleep disturbances reduce HRQoL has, to date, been challenging due to the need to collect complex time-varying data in high resolution. Such data collection has now been made possible by the widespread availability and use of mobile health (mHealth) technologies. OBJECTIVE In a mobile health (mHealth) study we tested whether sleep disturbance (both absolute values and variability) caused poor HRQoL. METHODS The Quality of life, sleep and rheumatoid arthritis (QUASAR) study was a prospective mHealth study of adults with RA. Participants completed a baseline questionnaire, and for 30 days wore a triaxial accelerometer to objectively assess sleep, and provided daily reports via a smartphone app of sleep (Consensus Sleep Diary (CSD)), pain, fatigue, mood, and other symptoms. Participants completed the World Health Organization Quality of Life-Brief (WHOQoL-BREF) questionnaire every 10 days. Multi-level modelling tested the relationship between sleep variables and WHOQoL-BREF domains (physical, psychological, environment and social). RESULTS Of 268 recruited participants, 254 were included in this analysis. Across all WHOQoL-BREF domains, participant’s scores were lower than the population average. CSD sleep parameters predicted WHOQoL-BREF domain scores. For example, for each hour increase in the total time asleep physical domain scores increased by 1.11 points (β = 1.11 (0.07, 2.15)) and social domain scores increased by 1.65 points. These associations were not explained by sociodemographic and lifestyle factors, disease activity, medication use, levels of anxiety, sleep quality, or clinical sleep disorders. They were, however, attenuated and no longer significant when pain, fatigue and mood were included in the model. Increased variability in the total time asleep, was associated with poorer physical and psychological domain scores independently of all covariates. There were no patterns of association between actigraphy measured sleep and WHOQoL-BREF. CONCLUSIONS Optimising total sleep time, increasing sleep efficiency, decreasing sleep onset latency, and reducing the variability in total sleep time could improve HRQoL in people with RA.

Download Full-text

Telemedically Augmented Palliative Care

Advances in Healthcare Information Systems and Administration - Achieving Effective Integrated E-Care Beyond the Silos ◽

10.4018/978-1-4666-6138-7.ch009 ◽

2014 ◽

pp. 185-201

Author(s):

Romina Nemecek ◽

Patrick Huber ◽

Sophie Schur ◽

Eva Masel ◽

Stefanie Porkert ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Family Caregivers ◽

Hospital Admissions ◽

Intervention Group ◽

Symptom Burden ◽

Well Being ◽

Control Group ◽

User Friendly

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.

Download Full-text

Sleep Disturbance in Palliative Care

Hospice and Palliative Medicine and Supportive Care Flashcards ◽

10.1093/med/9780190633066.003.0009 ◽

2018 ◽

Author(s):

Rebecca Burke ◽

Sriram Yennurajalingam

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Sleep Disturbance ◽

Poor Sleep ◽

Primary Care Population ◽

Nonrestorative Sleep ◽

Falling Asleep ◽

High Index Of Suspicion ◽

Prevalent Symptom

Sleep disturbance is a persistent source of suffering in palliative care patients. Symptoms such as difficulty falling asleep, staying asleep, early awakening, or nonrestorative sleep are all indicative of sleep disorders. Poor sleep can have consequential effects on perception of pain, fatigue, mood, and quality of life. It is not only a prevalent symptom in the primary care population but also may in fact affect more than 60% of the palliative care population. In addition to the complexities of treatment, insomnia often serves as a red herring to alarm physicians of underlying conditions. Therefore, it is essential that palliative care physicians maintain a high index of suspicion for such confounding conditions as restless leg syndrome, sleep apnea, and delirium. This chapter highlights the intricacies of sleep disturbance and focuses on the most common patient presentations.

Download Full-text

Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis

Multiple Sclerosis Journal ◽

10.1177/1352458517704078 ◽

2017 ◽

Vol 24 (5) ◽

pp. 663-674 ◽

Cited By ~ 15

Author(s):

Alessandra Solari ◽

Andrea Giordano ◽

Francesco Patti ◽

Maria Grazia Grasso ◽

Paolo Confalonieri ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Sclerosis ◽

Palliative Care ◽

Controlled Trial ◽

Statistical Significance ◽

Symptom Burden ◽

Palliative Approach ◽

Home Based ◽

Palliative Care Outcome Scale

Background: Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce. Objective: To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers. Methods: Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months. Primary outcome measures were Palliative care Outcome Scale-Symptoms-MS (POS-S-MS) and Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW, not assessed in severely cognitively compromised patients). Results: Of 78 dyads randomized, 76 (50 HPA, 26 UC) were analyzed. Symptom burden (POS-S-MS) significantly reduced in HPA group compared to UC ( p = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months, and statistical significance was borderline in per-protocol analysis ( p = 0.062). Changes in SEIQoL-DW index did not differ in the two groups, as changes in secondary patient and carer outcomes. Conclusion: HPA slightly reduced symptoms burden. We found no evidence of HPA efficacy on patient quality of life and on secondary outcomes.

Download Full-text

Improving quality of life

10.1093/med/9780199550173.003.0012 ◽

2013 ◽

Author(s):

Shirley Bush ◽

Eduardo Bruera

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Symptom Burden ◽

Cancer Control ◽

Control Programme ◽

Palliative Intent ◽

Life Threatening Illness ◽

Detection And Diagnosis ◽

Improvement In Survival

Chapter 12 discusses oncological treatments that may be administered with either a curative or palliative intent. If cancer in a patient cannot be cured, then the focus of treatment changes to achieving an improvement in survival time, reducing symptom burden, optimizing performance, and hence improving quality of life (QOL). Palliative care is the last of the four components of a cancer control programme, after prevention, early detection, and diagnosis and treatment. Patients with advanced cancer may experience physical, psychosocial, and spiritual difficulties throughout their illness which impact on their overall QOL. The main objective of palliative care is to improve the QOL for both patients with life-threatening illness and their families. Therefore, it is necessary to assess QOL to ascertain if this goal is being met.

Download Full-text

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.

Download Full-text

Moving palliative care upstream for patients diagnosed with head and neck cancers.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.29_suppl.227 ◽

2020 ◽

Vol 38 (29_suppl) ◽

pp. 227-227

Author(s):

Tamara M Day

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Head And Neck ◽

Symptom Burden ◽

Psychosocial Distress ◽

Head And Neck Cancers ◽

Improve Quality ◽

Convenience Sample

227 Background: Adults with cancer face complex treatment choices and symptom burden that impact their quality of life. Goals of palliative care (PC) are to reduce symptom burden and improve quality of life. Strong evidence exists that PC helps reduce symptom burden, decreases hospital utilization, and improve quality of life. Yet, PC remains underutilized, especially in the context of cancer care. Methods: This descriptive longitudinal study evaluated whether use of a psychosocial distress screening tool would help identify patients eligible for PC. A convenience sample of adults with diagnosis of head and neck cancers presenting to an otolaryngology clinic, located in the cancer center of a Midwestern academic health system, were screened for eligibility for PC referral. If eligible, the provider was notified and introduced PC to the patient. Upon acceptance, a PC referral was ordered. The project consisted of baseline (n = 61) and follow-up chart reviews (n = 60) of patients seen in clinic during over a 3-month period. Results: We found an increase in PC referrals from 14.6% at baseline to 30.8% in follow-up, a 227% increase. Psychosocial distress screenings increased from 5% at baseline to 45% in follow-up, an increase of 200%. Of patients who received a PC referral, 85.6% accepted. There were statistically significant differences found between the pre- and post-intervention groups for marital status, χ2 (3) = 9.67, ( p = .02); and cancer stage χ2 (4) = 21.35, ( p = .00) with increased referrals for married patients at higher cancer stages in the prospective group. Conclusions: This study has shown physicians maybe more likely to offer PC referrals based on cancer stages, and not based on psychosocial distress symptoms. Potential barriers to early referral to PC were identified and could serve as useful information for future studies.

Download Full-text

Sleep Disturbance in Gynaecologic Malignancies-an Overview

10.33169/gyne.obste.gaooaoj-i-107 ◽

2020 ◽

Vol I (2) ◽

pp. 29-32

Author(s):

Pavan Deepak

Keyword(s):

Quality Of Life ◽

General Population ◽

Sleep Disturbance ◽

Cancer Patients ◽

Sleep Disturbances ◽

Treatment Strategies ◽

Well Being ◽

Systematic Research ◽

Gynaecologic Cancer

Sleep plays a pivotal role in maintaining homeostasis and one of a few foremost determinants of Quality of Life. Quality of life is a well-studied topic in oncology and various measures are taken to improve quality of life in this setting, in order to achieve therapeutic outcome and compliance in general in cancer patients. Sleep disturbances and disruption in circadian rhythm is among a few common presenting complaints of patients with malignancy and affects between 30% to 75% of newly diagnosed or recently treated cancer patients,1 which are reported as double that of the general population, paving the way for decreased compliance and inefficacy of therapy and pose as a detriment to general well-being, and quality of life. It is evident that mood disorders and sleep disturbances are more prevalent in females (1.3 to 1.8 times more than men),2 one may theorize that the prevalence of sleep disturbance in gynaecologic malignancies is greater than that of general population. Sleep disturbances in gynaecologic cancer patients often include difficulty in initiation of sleep, frequent awakening, difficulty in staying asleep, and restless leg syndrome. Systematic research on various sleeps disorders and their therapeutic approach in gynaecologic cancers in general is lacking. This article aims at elucidating and giving overview of sleep pattern changes in gynaecologic malignancies and therapeutic approaches to foster better sleep in this subset of population. This article also emphasizes the need to envisage the treatment strategies targeting cytokines and cortisol in improvement of sleep parameters in gynaecologic malignancies.

Download Full-text