Assessment and Validation of the EQ-5D Among a Population of Myeloproliferative Neoplasm Patients

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 5179-5179 ◽  
Author(s):  
Robyn M. Scherber ◽  
Steven Knapper ◽  
Sonia Fox ◽  
Heidi E. Kosiorek ◽  
Marzia Shah ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Essential Thrombocythemia ◽  
Research Funding ◽  
Myeloproliferative Neoplasm ◽  
Self Care ◽  
Composite Score ◽  
Health State ◽  
Patient Reported ◽  
Anxiety Depression

Abstract Introduction Individuals with the Philadelphia chromosome negative myeloproliferative neoplasms (MPNs) have previously been shown to experience symptoms in excess to age and comorbidity matched peers. Although numerous assessments of symptom burden and quality of life have been utilized among MPN populations, including the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30), Patient Reported Outcomes Measurement Information System (PROMIS¨) fatigue scale, and Functional Assessment of Cancer Therapy-Lymphoma (FACT-Lym) and the Myeloproliferative Neoplasm Symptom Assessment Form Total Symptom Score (MPN-10), there are currently no validated assessments of overall health. Developed by the EuroQol Group to assess heath status, the EQ-5D is an internationally validated self-assessment which may be useful in the assessment of health state among MPN patients (Annals of Medicine, 2001. 33:337-43). Methods The EQ-5D evaluates five dimensions of mobility, self-care, usual activities, pain/discomfort and anxiety/depression, on a scale from no problems to extreme problems and assesses patient reported health state via a numerical visual analogue scale (VAS) ranging from 0 to 100. The health state score is a composite score of these items ranging from 0 to 1.0, with higher scores indicating an improved health state. EQ-5D survey participants were essential thrombocythemia (ET) and polycythemia (PV) patients participating in the MAJIC United Kingdom (UK) trial. The MAJIC trial is a randomized, phase II study of best available therapy versus JAK inhibition in individuals with PV or ET who have been resistant or intolerant of cytoreduction with hydroxyurea /hydroxycarbamide. This study was one of the first Trials Acceleration Programme (TAP) trials and is funded by Leukaemia Lymphoma Research, with drug supplied by Novartis. Only baseline EQ-5D assessments taken at study enrollment were included in this analysis. Comparative analysis was preformed using the MPN-10 (J Clin Oncol.2012. 30:4098-103). Results: Participant Demographics: Sixty six patients with ET and 55 patients with PV completed the EQ-5D questionnaire. Median respondent age was 65 years old and half of respondents were female (54%). Average MPN duration was 10 years for ET and 9.2 years for PV. EQ-5D Scoring: Severe to extreme difficulties in the items of mobility, self-care, usual activities, pain/discomfort and anxiety/depression were common (Table 1).Patients with PV tended to have higher proportion of patients with severe to extreme difficulties in individual disease dimensions, higher VAS score, and worsened health state compared to their essential thrombocythemia counterparts, although these effects were not significant. Average VAS health score was 70.4 (+21.2) for ET and 66.5 (+19.6). When evaluating the health state composite score, the mean ET score was 0.74 (+0.32) and mean PV score was 0.66 (+0.28). EQ-5D Validation: The EQ-5D had excellent internal consistency (CronbachÕs alpha=0.87) and strong internal correlation. When evaluating external validity, strong correlations existed between the EQ-5D and the MPN-SAF TSS scales for dimensions of mobility, usual activities, pain and overall health state (many items with r >0.5 and p<0.001). Conclusions: The EQ-5D is a valid and accurate instrument for the brief assessment of health state among MPN patients. This instrument demonstrates excellent clinical utility in a large clinical study cohort and can be used in both clinical practice and trial settings. When comparing EQ-5D health state scores, ET and PV patients had worsened health than the general UK population age 60 to 69 (0.774; Med Decis Making. 2011.31(6)800-4), but similar health to individuals with other malignancies including breast cancer (0.760), prostate cancer (0.743), and lung cancer (0.689). Disclosures Mesa: NS Pharma: Research Funding; Novartis Pharmaceuticals Corporation: Consultancy; Incyte Corporation: Research Funding; Pfizer: Research Funding; Promedior: Research Funding; CTI Biopharma: Research Funding; Gilead: Research Funding; Genentech: Research Funding; Pfizer: Research Funding. Harrison:CTI Biopharma: Consultancy, Honoraria, Speakers Bureau; Sanofi: Honoraria, Speakers Bureau; Shire: Speakers Bureau; Gilead: Honoraria; Novartis: Honoraria, Research Funding, Speakers Bureau.

scholarly journals Financial Toxicity and Associated Patient-Reported Quality of Life in Plasma Cell Disorders

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4012-4012
Author(s):  
Walker M Schmidt ◽  
Amylou C. Dueck ◽  
Angela Dispenzieri ◽  
Rahma M Warsame
Keyword(s):  
Quality Of Life ◽  
Pain Intensity ◽  
Research Funding ◽  
College Education ◽  
Newly Diagnosed ◽  
Financial Toxicity ◽  
Patient Reported ◽  
Anxiety Depression

Abstract Background: Advances in supportive care and novel therapies have driven improved outcomes for patients with Multiple myeloma (MM) and Light Chain Amyloidosis (AL). Unfortunately, this progress demands a heavy toll - higher patient costs. Financial toxicity (FT) is the adverse impact of cancer on a patient's financial well-being, contributing to increased distress, lower medication compliance, and even reduced survival. We aimed to evaluate MM and AL patients for financial toxicity over time to better understand its impact on various quality of life (QOL) domains. Methods: Adult patients with MM or AL that receive care at Mayo Clinic, Rochester MN, were recruited for a prospective study between December 2019 and March 2021. FT was measured using the validated COmprehensive Score for financial Toxicity (COST) questionnaire at the time of enrollment, 3 months, and 6 months follow-up. COST scores range from 0-44, with higher scores indicating lower FT. We defined patients with a COST score of ≤ 23 as having substantial FT. Domains of QOL were assessed via the Patient Reported Outcome Measurement Information System (PROMIS)-29 survey. Patient demographics and clinical information were abstracted from the electronic medical record. Statistical analysis included a comparison of COST scores among groups through Wilcoxon rank-sum, Kruskal-Wallis, and Jonckheere-Terpestra tests for binary, unordered, and ordered categorical variables, respectively. Results: One hundred and sixteen patients (96 MM, 83%; AL 20, 17%) enrolled in this study. The cohort is characterized as follows: 49% age 65+ (51% age 35-64), 54% male, 93% White, 4.3% Black, 3.5% Hispanic, 44% with incomes &gt; USD 75k/yr (26% &lt; USD 50k/yr), 77% with at least some college education (32% graduate or doctoral degree), 52% insured through Medicare (4.3% through Medicaid), 36% employed (53% retired), and 71% married (16% divorced). Forty-three percent of patients enrolled in the study were newly diagnosed (56% relapsed), and 72% had received an autologous stem cell transplant. Baseline mean COST score was25.9 (N=116; SD 10.2), with 37% reporting FT. A total of 101 patients (85 MM; 16 AL) completed a baseline and either 3- or 6-month COST survey. Thirty-eight of these patients (38%) reported FT at the time of enrollment. Among those reporting baseline FT, 71% continued to report FT at 3 or 6 months; 29% showed reduced FT. Of the 62% of patients who reported low FT at baseline, 78% showed continued low FT at 3 or 6 months; 22% showed increased FT. Results of longitudinal follow-up are outlined in Figure 1. FT was significantly associated with increased anxiety, depression, and pain intensity domains on the PROMIS-29. Substantial FT was associated with: women, Medicaid as primary insurance, and being divorced. FT was also greater in unemployed/disabled vs retired individuals. Conversely, low FT was associated with: males, earning &gt; USD 75k/yr, Medicare as primary insurance, having at least some college education, being retired, and traveling 300+ miles for care. Financial toxicity did not differ significantly by age, race, ethnicity, disease status (newly diagnosed vs relapsed), or transplant status. Discussion : Financial toxicity was present in more than one-third of AL and MM patients in this high-earning and well-educated cohort. Financial toxicity was associated with increased anxiety, depression, and pain intensity, contributing to lower patient quality of life. Longitudinal follow-up has shown financial toxicity to be dynamic, necessitating routine evaluation of patient financial burdens. Future work will focus on automating FT assessment with incorporation into routine care and developing care processes to support patients. Figure 1 Figure 1. Disclosures Dispenzieri: Alnylam: Research Funding; Takeda: Research Funding; Pfizer: Research Funding; Oncopeptides: Consultancy; Sorrento Therapeutics: Consultancy; Janssen: Consultancy, Research Funding.

Myeloproliferative Neoplasm Quality of Life (MPN-QOL) Study Group: Interim Results from the MPN Experimental Assessment of Symptoms By Utilizing Repetitive Evaluation (MEASURE) Trial

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5479-5479
Author(s):  
Allison H Scotch ◽  
Robyn M. Scherber ◽  
Nan Zhang ◽  
Heidi E. Kosiorek ◽  
Amylou C. Dueck ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Symptom Severity ◽  
Research Funding ◽  
Myeloproliferative Neoplasm ◽  
Symptom Assessment ◽  
Study Group ◽  
Experimental Assessment ◽  
Patient Reported ◽  
Evaluation Measure

Abstract Background: Myeloproliferative neoplasms (MPN) including polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF) are clonal hemopathies characterized by burdensome symptom profiles and impaired quality of life. Few studies have evaluated patient-reported outcomes during treatment with non-experimental pharmacological regimens. Aims: The Myeloproliferative Neoplasm Quality of Life (MPN-QOL) Study Group aims to objectively quantify MPN symptom severity, frequency and quality of life at baseline and throughout treatment with non-experimental therapies utilizing the Myeloproliferative Neoplasm Symptom Assessment Form - Total Symptom Score (MPN-SAF TSS; JCO 2012). In this abstract, we provide updated results for the prospective international cohort trial currently in active enrollment: the MPN Experimental Assessment of Symptoms by Utilizing Repetitive Evaluation (MEASURE) trial. Methods: This study aims to recruit 180 international ET, PV, and MF (including primary MF and post-ET or post-PV MF) patients receiving non-experimental medical therapy and/or phlebotomy. Patients complete the MPN-SAF for seven consecutive days at enrollment and repeat the survey for an additional seven consecutive days between 90 days and six months. Patients also complete the European Organisation for Research and Treatment of Cancer (EORTC) and M.D. Anderson Symptom Inventory (MDASI) instruments at enrollment and on the first day of the second assessment. At visits, physicians acquired demographic, laboratory, physical examination, and radiographic data. Descriptive statistics were used to summarize data. Results: Clinical Data The MEASURE trial opened for enrollment in 2012 and remains in recruitment phase with 15 participating international sites. To date, 39 patients have been enrolled and 25 have completed both study visits. Participants include ET (28%), PV (24%), and MF (48%; 50% primary MF, 8% post-ET, 42% post-PV) patients. The majority of patients are male (64%) and of expected age (mean 69.3, range 39-89) for the disorders. Seventeen percent had prior thrombosis, 9% required red blood cell transfusion, and none reported prior splenectomy or hemorrhage. Mean hematologic measures included hemoglobin 13.2 g/dL, WBC count 11.4 x109/L, ANC 8.5 x109/L, and platelets 514 x109/L. Therapies received prior to enrollment included aspirin (n=16), hydroxyurea (n=11), phlebotomy (n=8), warfarin/clopidogrel/anticoagulation (n=8), erythropoietin (n=2), and interferon (n=1). The most common current MPN therapies were hydroxyurea (n=9), aspirin (n=9), interferon (n=4), and phlebotomy (n=2). Symptom Assessment In comparing MPN-SAF TSS mean symptom scores, all symptoms except bony pain improved between the first and second visits, including fatigue, early satiety, abdominal discomfort, inactivity, concentration, night sweats, itching, fever, weight loss, and overall quality of life (Figure1). Total MPN-SAF TSS scores improved from a mean of 32.3 to 25.9. On the EORTC, mean scores for physical, role, emotional, and social functioning improved from the first to the second visit (Figure 2). Cognitive functioning showed a slight decline. Global health status measure improved from 60.2 to 72.9. On the MDASI, symptom severity scores decreased from 3.6 to 2.8 from the first to second visit (Figure 3). Symptom distress measure decreased from 4.1 to 3.0. Discussion: Interim results from the MEASURE trial demonstrate that standard, non-experimental treatment regimens offer improvement in quality of life-related symptoms on multiple patient-reported survey instruments including the MPN-SAF TSS, EORTC QLQ-C30, and MDASI. Updated data including symptom correlations and mutational analysis to be presented at the 2016 ASH conference. Disclosures Ross: Novartis Pharmaceuticals: Honoraria, Research Funding; BMS: Honoraria. Radia:Novartis: Honoraria; Pfizer: Honoraria. McMullin:Novartis: Honoraria, Speakers Bureau. Cargo:Novartis: Honoraria; Celgene: Honoraria, Research Funding. Sekhar:Novartis: Research Funding. Mesa:Gilead: Research Funding; CTI Biopharma: Research Funding; Galena: Consultancy; Ariad: Consultancy; Incyte: Research Funding; Novartis: Consultancy; Celgene: Research Funding; Promedior: Research Funding.

scholarly journals Effect of Self-Care Guidelines on Quality of Life for Patients with Hepatocellular Carcinoma Undergoing Radiofrequency Ablation

2021 ◽  
Vol 3 (3) ◽  
pp. 11
Author(s):  
Azhar T. Zaki ◽  
Manal S. Hassan ◽  
Ahmed H. Soliman ◽  
Yosreah M. Mohamed
Keyword(s):  
Quality Of Life ◽  
Hepatocellular Carcinoma ◽  
Radiofrequency Ablation ◽  
Self Care ◽  
Care Practice ◽  
Total Quality ◽  
Patient Reported ◽  
Care Guidelines ◽  
Care Practices

Context: Hepatocellular carcinoma (HCC) is considered one of the most challenging tumors with high incidence, prevalence, and mortality rates. Radiofrequency Ablation (RFA) is one of the emerging therapeutic modalities used for the minimally invasive treatment in the management of early-stage HCC. Aim: This study aimed to assess the effect of self-care guidelines on quality of life for patients with Hepatocellular Carcinoma undergoing Radio Frequency Ablation. Methods: A quasi-experimental design was used to achieve the aim of this study. This study was conducted at the Interventional Radiology Unit, affiliated to Ain Shams University Hospital, on a purposive sample of 50 patients with hepatocellular carcinoma; 25 randomly allocated to the study group, and 25 allocated to the control group. A structured interview questionnaire for patients with hepatocellular carcinoma undergoing radiofrequency ablation was used to collect the study data. It comprises three parts: Sociodemographic characteristic, assessment of patients' medical health, and knowledge about HCC and RFA. The second tool was the quality of life of cancer survivors questionnaire (pre /posttest), and finally, a patient-reported self-care practices assessment checklist (pre /posttests). Results: There were statistically significant differences between the study and control groups regarding their total knowledge about hepatocellular carcinoma and radiofrequency ablation therapy pre and post-implementation of self-care guidelines. There were highly statistically significant differences between both groups regarding the total quality of life, pre and post-implementation of self-care guidelines. In addition, there were highly statistically significant differences regarding total self-care practice, pre, and post-implementation of self-care guidelines. A positive correlation was revealed between total knowledge with total self-care practice and total quality of life (pre/posttest). Also, a significant correlation was revealed between the total quality of life and self-care practices post self-care guidelines implementation at (p<0.001). Conclusion: Implementation of self-care guidelines were improved patients' knowledge, quality of life, and self-care practices for patients with hepatocellular carcinoma undergoing radiofrequency ablation. A simplified, illustrated, and comprehensive Arabic booklet including self-care guidelines should be available for patients with hepatocellular carcinoma undergoing radiofrequency ablation. Replication of the current study on a larger probability sample is recommended to achieve generalization of the results. Further studies are recommended to assess factors affecting the quality of life for patients with hepatocellular carcinoma undergoing radiofrequency ablation.

scholarly journals Health State Utility Valuation in Patients with Triple-Class-Exposed Relapsed and Refractory Multiple Myeloma Treated with the Bcma-Directed CAR T Cell Therapy, Idecabtagene Vicleucel (ide-cel, bb2121): Results from the Karmma Trial

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 14-15
Author(s):  
Michel Delforge ◽  
Nina Shah ◽  
Paula Rodriguez-Otero ◽  
Parameswaran Hari ◽  
Julia Braverman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Population ◽  
Research Funding ◽  
Health State ◽  
Publicly Traded ◽  
Health States ◽  
T Cell Therapy ◽  
Car T Cell Therapy ◽  
Car T

Introduction: Idecabtagene vicleucel (ide-cel, bb2121) is a B-cell maturation antigen-directed chimeric antigen receptor (CAR) T cell therapy under investigation in the KarMMa trial as a treatment for patients with relapsed and refractory multiple myeloma (RRMM) who are triple-class exposed to immunomodulatory drugs, proteasome inhibitors, and anti-CD38 antibodies. In the phase 2 KarMMa trial, ide-cel demonstrated a favorable benefit-risk profile in this patient population (Munshi NC, et al. J Clin Oncol 2020;38:8503). Ide-cel also demonstrated clinically meaningful improvements in the key health-related quality of life (HRQoL) symptoms associated with MM (Delforge M, et al. HemaSphere 2020;4:EP1000). Translating HRQoL data to health state utility values (HSUVs)/HRQoL weights is key to understanding the HRQoL impact of a treatment in relation to that of a healthy general population and is an important consideration in clinical decision making and health technology assessments. HSUVs are scored between 0 and 1, where 0 is death and 1 is perfect health. In the general population, individuals of a similar age range to patients with MM have HSUV scores of 0.83 in the USA, 0.80 in the UK, and 0.84 in Canada (Guertin JR, et al. CMAJ 2018;190:E155-161; Janssen MF, et al. Eur J Health Econ 2019;20:205-216). This analysis aimed to determine HSUVs for patients treated in the KarMMa study according to their progression status. Methods: HRQoL assessment in the KarMMa study (NCT03361748) included the European Quality of Life-5 dimensions 5 levels (EQ-5D-5L) health state classifier performed at specified time points: prior to receiving lymphodepleting chemotherapy (baseline), day of infusion (Day 1), Months 1, 2, 3, 6, 9, 12, and 15, inclusive of disease progression/relapse or complete remission. Using US, UK, and Canadian weights, HSUVs were estimated for the KarMMa trial at an aggregate level. A longitudinal mixed-effects model was used with health state as a fixed effect, and a random intercept term. Three models were run using different health states. Model 1 considered 3 health states: baseline, pre-progression, and post-progression. In Model 2, the pre-progression health state was split into 2 time periods: Day 1 to the end of Month 1, and Month 2 onward. In Model 3, 2 pre-progression health states were defined based on the quality of response to treatment, thus capturing the difference in HRQoL for patients achieving at least a very good partial response (≥ VGPR) or patients who did not achieve a VGPR (&lt; VGPR). Results: The HSUVs derived from the 3 different models using US, UK, and Canadian tariffs are summarized (Table). In all 3 models, patients in the pre-progression state experienced an increase in HRQoL from baseline. In Model 1, the increment ranged from +0.05 to +0.08. On progression, patients experienced a decrement (−0.01 to −0.03), but their HSUV remained above the baseline value by +0.04 to +0.05, indicating that ide-cel treatment was associated with an improvement in HRQoL, with some of the benefit remaining even upon disease progression. When HSUV in the pre-progression state was analyzed in Model 2 at Month 1 and then Month 2 onward, patients also experienced an increase in their HRQoL from baseline. While this increase was small in Month 1 (+0.02 to +0.04), the subsequent increase from baseline (i.e. from Month 2 onward) was more pronounced (+0.07 to +0.10) reflecting the benefits of a one-off administration of ide-cel and the associated treatment-free interval. A further analysis of the pre-progression HSUV by the quality of response in Model 3 showed that patients who achieved ≥ VGPR had a greater improvement in HRQoL (+0.08 to +0.11) than patients who achieved &lt; VGPR. Both response levels were associated with an improvement in HRQoL compared with baseline, with HRQoL for patients achieving ≥ VGPR approaching that of the general population (Figure). Conclusions: Results of this analysis indicate that ide-cel provides clinically meaningful improvements in HRQoL for patients with triple-class-exposed RRMM. The benefit is particularly marked in patients who achieve ≥ VGPR, in whom HRQoL approaches that of the general population. Disclosures Delforge: Janssen: Honoraria, Research Funding; BMS: Honoraria, Research Funding; Takeda: Honoraria; Amgen: Honoraria. Shah:BMS, Janssen, Bluebird Bio, Sutro Biopharma, Teneobio, Poseida, Nektar: Research Funding; GSK, Amgen, Indapta Therapeutics, Sanofi, BMS, CareDx, Kite, Karyopharm: Consultancy. Rodriguez-Otero:Celgene-BMS: Consultancy, Honoraria; Mundipharma: Research Funding; Janssen, BMS: Other: Travel, accommodations, expenses; BMS, Janssen, Amgen: Honoraria; Janssen, BMS, AbbVie, Sanofi, GSK, Oncopeptides, Kite, Amgen: Consultancy, Honoraria. Hari:Amgen: Consultancy; GSK: Consultancy; Janssen: Consultancy; BMS: Consultancy; Incyte Corporation: Consultancy; Takeda: Consultancy. Braverman:Bristol Myers Squibb: Current Employment, Current equity holder in publicly-traded company. Trigg:Adelphi Values: Current Employment. Patel:BMS: Current Employment. Huang:BMS: Current Employment, Current equity holder in publicly-traded company. Hege:Arcus Biosciences: Divested equity in a private or publicly-traded company in the past 24 months; Mersana Therapeutics: Current equity holder in publicly-traded company, Membership on an entity's Board of Directors or advisory committees; BMS: Current Employment, Current equity holder in publicly-traded company, Other: Travel, accommodations, expenses, Patents & Royalties: Numerous, Research Funding. Dhanasiri:BMS: Current Employment, Current equity holder in publicly-traded company.

scholarly journals Longitudinal Changes of Impairments in Health-Related Quality of Life in Lower-Risk MDS Patients: A European Leukemianet Study

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 3097-3097
Author(s):  
Reinhard Stauder ◽  
Ge Yu ◽  
Karin A Koinig ◽  
Dominic Culligan ◽  
Pierre Fenaux ◽  
...  
Keyword(s):  
Board Of Directors ◽  
Research Funding ◽  
Self Care ◽  
Initial Diagnosis ◽  
Health Related Quality ◽  
Advisory Committees ◽  
Related Quality ◽  
Health Related ◽  
Anxiety Depression

Abstract Introduction Patient perception and perspective have become relevant in individualised therapy planning in MDS. Thus, integration of patient-reported outcomes (PRO), including health-related quality of life (HRQoL), in studies and in clinical practice is essential. We demonstrated recently pronounced impairments in HRQoL in patients with MDS (Stauder et al., Leukemia 2018). However, longitudinal data on aspects of HRQoL in MDS are rare. Objectives 1. To describe longitudinal changes of HRQoL in MDS and 2. To compare the time course in different patient subgroups to define patients at high risk of deterioration of HRQoL. Methods The EUMDS Registry is a prospective, non-interventional longitudinal study, enrolling newly diagnosed patients with IPSS low or intermediate-1 MDS from 143 haematology centres in 17 European countries and Israel. HRQOL was assessed by EQ-5D questionnaire. Patients were selected, if they fully completed the EQ-5D score (five dimensions and VAS) at baseline and at 6 and 12 months, resulting in a total of 743 subjects at 86 centres in 15 countries. Differences in response for the five EQ-5D dimensions between patients subgroups were evaluated using chi-squareMcNemar tests. For EQ-VAS, the mean score with standard deviation was calculated. Wilcoxon's signed ranks tests were conducted to identify changes over time between HRQOL values at baseline and at 6, 12 months. Results Moderate/severe impairments at initial diagnosis were observed in the dimensions mobility (39.4%), self-care (10.2%), usual activities (32.6%), pain discomfort (46.6%) and anxiety/depression (36.7%). As compared with baseline a pronounced increase in moderate/severe problems was observed at 12 months in the dimensions self-care (10.2% (baseline) vs 15.5% (12 mo); p=0.003) and in usual activities (32.6% vs 40.6%; p=0.001). In contrast, self-reported mobility, pain and anxiety/depression did not change significantly. Decrease in VAS over time revealed a trend toward significance (75 vs. 70; p=0.056). More pronounced impairment of HRQOL was most significantly observed in patients of advanced age: 60-75 yrs in self-care 8.3% vs 14.3% (p=0.016) and in usual activities 28% vs 35.7% (p=0.032); in persons 75+ years in self-care 14.2% vs 19.8% (p=0.058) and in usual activities 48.7% vs 50.3% (p=0.003). Similarly, VAS significantly decreased in the latter group from 70 to 66 (p=0.038). Increases in impairments were most prominent in male patients in self-care (9.7 vs 16.7%; p=0.002) and in usual activities (29.4 vs 38.7%; p=0.003), whereas in women HRQoL at the different time points was not significantly different. Pronounced decreases in HRQoL aspects was observed in anemic patients (Hb-levels <10g/dl) at initial diagnosis: mobility 47.4 vs 55.2% (p=0.06), self-care 13.5 vs 21.1% (p=0.015), usual activities 41.3 vs 52.7% (p=0.006), pain/discomfort 43.3 vs 55.6% (p=0.058) and VAS (70 vs 68; p=0.051). A reduction in HRQoL was observed even in patients with a Hb-level ≥10 g/dl in the dimension self-care (7.9 vs 12.1%; p=0.042). Pronounced decreases in problems in HRQoL were observed in anemic patients (Hb<10 g/dL) who received transfusions in self-care (18.1% vs 25.6%; p=0.029), in usual activities (43.6% vs 61.5%; p=0.038), and in VAS (67.3 vs 61.9; p=0.003). Transfusion dependent patients were at high risk to develop impairments in VAS (70 vs 64; p=0.006) and in most dimensions of EQ-5D (mobility 50.2 vs 62%, p=0.017), self-care (8.8 vs 11.5%, p=0.017), usual activities (41.6 vs 62.9%, p=0.01) and pain/discomfort (48.3 vs 58.5%, p=0.038). Conclusions Low-risk MDS patients report relevant restrictions in distinct dimensions at initial diagnosis. A relevant drop in HRQoL is observed at 12 months particularly in self-care and in usual activities. Patients of advanced age, males and those with initial low Hb-levels most frequently reported declines in HRQoL. Transfusion-need represents a relevant predictor of deterioration of HRQoL. These analyses form the basis to identify vulnerable patients and to tailor individualized interventions and treatment approaches. Analyses are planned to unravel the role of intervention therapies on observed changes in HRQoL. Disclosures Stauder: Teva: Research Funding; Novartis: Honoraria, Membership on an entity's Board of Directors or advisory committees; Celgene: Honoraria, Membership on an entity's Board of Directors or advisory committees. Fenaux:Celgene: Honoraria, Research Funding; Jazz: Honoraria, Research Funding; Roche: Honoraria; Otsuka: Honoraria, Research Funding; Janssen: Honoraria, Research Funding. Garelius:novartis: Honoraria. Efficace:Incyte: Consultancy; Amgen: Consultancy; TEVA: Consultancy; Bristol Meyers Squibb: Consultancy; Orsenix: Consultancy; Seattle Genetics: Consultancy; Lundbeck: Research Funding; TEVA: Research Funding; AMGEN: Research Funding. de Witte:Amgen: Consultancy, Research Funding; Celgene: Honoraria, Research Funding; Novartis: Research Funding.

scholarly journals Quality of life trajectories during the first three years after diagnosis of breast cancer: the NEON-BC study

2019 ◽  
Author(s):  
Luisa Lopes-Conceição ◽  
Mariana Brandão ◽  
Natália Araújo ◽  
Milton Severo ◽  
Teresa Dias ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Sleep Quality ◽  
Patient Reported Outcomes ◽  
Life Questionnaire ◽  
European Organization ◽  
Life Trajectories ◽  
Patient Reported ◽  
Anxiety Depression

Abstract Background We aimed to identify and characterize quality of life trajectories up to 3 years after breast cancer diagnosis. Methods A total of 460 patients were evaluated at baseline (before treatments), and after 1- and 3-years. Patient-reported outcomes, including quality of life (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, QLQ-C30), anxiety, depression and sleep quality, were assessed in all evaluations. Model-based clustering was used to identify quality of life trajectories. Results We identified four trajectories without intersection during 3 years. The two trajectories characterized by better quality of life depicted relatively stable scores; in the other trajectories, quality of life worsened until 1 year, though in one of them the score at 3 years improved. Sociodemographic and clinical characteristics at baseline did not differ between trajectories, except for mastectomy, which was higher in the worst trajectory. Anxiety, depression and poor sleep quality increased from the best to the worst trajectory. Conclusions The type of surgery and the variation of other patient-reported outcomes were associated with the course of quality of life over 3 years. More research to understand the heterogeneity of individual trajectories within these major patterns of variation is needed.

“Breathing is the absolute key”: using mixed-methods to understand how a digital mindfulness intervention can improve quality of life for adults with asthma.

2021 ◽  
Author(s):  
Sabina Stanescu ◽  
Sarah Kirby ◽  
Megan Liddiard ◽  
Beth Stuart ◽  
Ratko Djukanovic ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Illness Perceptions ◽  
Feasibility Trial ◽  
Specific Content ◽  
Mindfulness Intervention ◽  
Patient Reported ◽  
Mindfulness Interventions ◽  
Anxiety Depression

Introduction: Despite effective pharmacotherapy, patient-reported asthma outcomes such as quality of life remain suboptimal. Digital mindfulness interventions may be helpful for people with asthma by targeting psychological dysfunction such as illness perceptions, anxiety and depression.Methods: In a mixed-methods process evaluation, we examined how ‘Headspace’, a widely-used digital mindfulness intervention, was used in a randomised controlled feasibility trial of adults with asthma from 16 UK GP practices. 94 adults who were allocated to the intervention completed questionnaire measures of anxiety, depression, quality of life and illness perceptions, and 27 were selected to complete in-depth qualitative interviews. Findings were triangulated with ‘back-end’ usage data from the Headspace digital intervention.Results: Interviews explored participant perceptions of mindfulness interventions (and non-pharmacological interventions more broadly), as well as wider psychological factors relevant in asthma, such as anxiety, depression, mindful acceptance and awareness, and psychological inflexibility. The amount that Headspace was used was not associated with the degree of improvement in outcome measures and in general participants perceived the intervention as useful, and reported it was helpful for their wellbeing. They were generally positive about mindfulness interventions, especially digital ones. Conclusions: Digital mindfulness interventions are acceptable for people with asthma and disease-specific content should be used to target illness perceptions that may underlie reduced quality of life for people with asthma.

Health-related quality of life for glioblastoma short and long-term survivors receiving treatment with TTfields.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 2055-2055
Author(s):  
Joshua David Palmer ◽  
Po-Ya Chuang ◽  
Gordon Chavez ◽  
Bruce CM Wang ◽  
Christina Proescholdt
Keyword(s):  
Quality Of Life ◽  
Self Care ◽  
Usual Activity ◽  
Five Dimensions ◽  
Patient Reported ◽  
The Impact ◽  
Eq Vas ◽  
Time Since Diagnosis

2055 Background: The aim of this study was to administer the first large-scale, international survey eliciting real-world patient-reported quality-of-life (QoL) for patients with newly diagnosed and long-term glioblastoma (GBM) currently receiving treatment with TTFields. Methods: A survey was designed and mailed to 2,815 patients actively using TTFields for treatment of GBM in the United States (US, n = 2,182) and Europe (EU, n = 633). The survey included 1) demographic information, 2) patient-reported clinical information and 3) EuroQol’s EQ-5D-5L and EQ visual analogue scale (EQ-VAS) surveys. Univariate and multivariate analyses were performed on five dimensions (mobility, self-care, usual activity, pain/discomfort, anxiety/depression) of the EQ-5D-5L and EQ-VAS to understand the impact of patient demographics and clinical characteristics on QOL. Results: A total of 1,106 patients were included (39.3% response rate) with 782 and 324 responses in the US and EU, respectively. The median time from diagnosis was 14 mos (range, 0-301 mos) and ≥24 mos in 28.4% of patients. Patients were mostly male (62.3%) with a mean age of 58.5 (SD = 12.5) and 69.3% had stable disease. Mean EQ-VAS was 68.2 for all patients and was significantly higher for those with > 15 months since diagnosis compared to < 15 months since diagnosis (p = 0.008). There were significantly fewer problems reported on self-care ( p = 0.04) and usual activity ( p = 0.007) in patients with a longer time since diagnosis in the univariate analysis. In the multivariate analysis, patients with a longer time since diagnosis reported significantly better EQ-VAS ( p = 0.04). The effect size in the multivariate analysis for time since diagnosis on EQ-VAS was higher in the progressed subgroup ( p = 0.17) compared to the broader sample (0.08). The EQ-VAS and all five dimensions including mobility, self-care, usual activity, pain/discomfort, and anxiety/depression were improved for stable patients compared to progressed patients in the univariate and multivariate analyses. However, when stratified by progression status, progressed patients with longer time from diagnosis had significantly fewer reported problems with mobility ( p = 0.04), self-care ( p = 0.004) and usual activity ( p = 0.008), and significantly better self-rated health status ( p = 0.02). Conclusions: GBM survivors receiving TTFields reported significantly improved health status over time since diagnosis. Long-term survival with TTFields does not have a detriment in patient reported quality of life, in fact with longer time from diagnosis QOL significantly improves. This is true for patients with stable and progressed disease. Future prospective clinical trials are needed to further study the impact of our treatment and tumor progression on patient QOL.

Health related quality of life among postmenopausal woman with hormone responsive HER2− breast cancer in Indonesia

2021 ◽  
Vol 32 (4) ◽  
pp. 561-565
Author(s):  
Ria Etikasari ◽  
Tri Murti Andayani ◽  
Dwi Endarti ◽  
Kartika Widayati Taroeno-Hariadi
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Postmenopausal Women ◽  
Utility Score ◽  
Health State ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Anxiety Depression

Abstract Objectives Breast cancer (BC) in women could decrease health-related quality of life (HRQoL). HRQoL becomes important to be assessed to design a relevant treatment that could improve patient outcomes. Furthermore, assessing HRQoL by measuring health state utilities becomes pivotal for health economic evaluation. This study aimed to describe the HRQoL of postmenopausal women with hormone responsive (HR+) HER2− BC using the EQ5D5L instrument in Indonesia. Methods A cross-sectional study was conducted among 126 patients in Dr. Sardjito Hospital in Indonesia. The HRQoL was assessed by interviewing BC patients using the EQ5D5L questionnaire, and the utility index was calculated using the Indonesian value set. Information regarding clinical characteristic and socio-demographic were gained from patient medical records. One-way ANOVA and post-hoc Scheffe’s test was performed to compare the utility score within the health state. Results Of the 126 patients, a mean ± SD for the age of 59.2 ± 6.1 years. The major problems of patients were pain/discomfort (75.4%) followed by anxiety/depression (54.8%). The mean (SD) of EQ5D VAS was 76.64 (14.91). Mean (SD) of utility score was 0.87 (0.10), 0.77 (0.19) and 0.58 (0.44) for free metastasis (FM), locoregional metastasis (LM) and distant metastasis (DM), respectively. Poor QoL was observed at DM health state (p<0.05). Conclusions HRQoL of postmenopausal women with HR+ HER2− BC was low. The major reported problems were pain/discomfort and anxiety/depression.

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