scholarly journals Myeloproliferative Neoplasm (MPN) Symptom Assessment Form Total Symptom Score: Prospective International Assessment of an Abbreviated Symptom Burden Scoring System Among Patients With MPNs

2012 ◽  
Vol 30 (33) ◽  
pp. 4098-4103 ◽  
Author(s):  
Robyn M. Emanuel ◽  
Amylou C. Dueck ◽  
Holly L. Geyer ◽  
Jean-Jacques Kiladjian ◽  
Stefanie Slot ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Symptom Score ◽  
Myeloproliferative Neoplasm ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Response To Therapy ◽  
Total Symptom Score ◽  
Life Questionnaire ◽  
Scoring Method

Purpose Myeloproliferative neoplasm (MPN) symptoms are troublesome to patients, and alleviation of this burden represents a paramount treatment objective in the development of MPN-directed therapies. We aimed to assess the utility of an abbreviated symptom score for the most pertinent and representative MPN symptoms for subsequent serial use in assessing response to therapy. Patients and Methods The Myeloproliferative Neoplasm Symptom Assessment Form total symptom score (MPN-SAF TSS) was calculated as the mean score for 10 items from two previously validated scoring systems. Questions focus on fatigue, concentration, early satiety, inactivity, night sweats, itching, bone pain, abdominal discomfort, weight loss, and fevers. Results MPN-SAF TSS was calculable for 1,408 of 1,433 patients with MPNs who had a mean score of 21.2 (standard deviation [SD], 16.3). MPN-SAF TSS results significantly differed among MPN disease subtypes (P < .001), with a mean of 18.7 (SD, 15.3), 21.8 (SD, 16.3), and 25.3 (SD, 17.2) for patients with essential thrombocythemia, polycythemia vera, and myelofibrosis, respectively. The MPN-SAF TSS strongly correlated with overall quality of life (QOL; r = 0.59; P < .001) and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 (EORTC QLQ-C30) functional scales (all P < .001 and absolute r ≥ 0.50 except social functioning r = 0.48). No significant trends were present when comparing therapy subgroups. The MPN-SAF TSS had excellent internal consistency (Cronbach's α = .83). Factor analysis identified a single underlying construct, indicating that the MPN-SAF TSS is an appropriate, unified scoring method. Conclusion The MPN-SAF TSS is a concise, valid, and accurate assessment of MPN symptom burden with demonstrated clinical utility in the largest prospective MPN symptom study to date. This new prospective scoring method may be used to assess MPN symptom burden in both clinical practice and trial settings.

scholarly journals Tobacco use in the Myeloproliferative neoplasms: symptom burden, patient opinions, and care

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sarah F. Christensen ◽  
Robyn M. Scherber ◽  
Gina L. Mazza ◽  
Amylou C. Dueck ◽  
Nana Brochmann ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Tobacco Use ◽  
Myeloproliferative Neoplasms ◽  
Myeloproliferative Neoplasm ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Cross Sectional ◽  
Former Smokers ◽  
Never Smokers

Abstract Background Patients with Philadelphia-negative Myeloproliferative Neoplasms (MPN) suffer from numerous symptoms and decreased quality of life. Smoking is associated with an increased symptom burden in several malignancies. The aim of this study was to analyze the association between smoking and MPN-related symptom burden and explore MPN patients’ opinions on smoking. Methods A total of 435 patients with MPN participated in a cross-sectional internet-based survey developed by the Mayo Clinic and the Myeloproliferative Neoplasm Quality of Life Group. Patients reported their demographics, disease characteristics, tobacco use, and opinions on tobacco use. In addition, MPN-related symptoms were reported via the validated 10-item version of the Myeloproliferative Neoplasms Symptom Assessment Form. Results Current/former smokers reported worse fatigue (mean severity 5.6 vs. 5.0, p = 0.02) and inactivity (mean severity 4.0 vs. 3.4, p = 0.03) than never smokers. Moreover, current/former smokers more frequently experienced early satiety (68.5% vs. 58.3%, p = 0.03), inactivity (79.9% vs. 71.1%, p = 0.04), and concentration difficulties (82.1% vs. 73.1%, p = 0.04). Although not significant, a higher total symptom burden was observed for current/former smokers (mean 30.4 vs. 27.0, p = 0.07). Accordingly, overall quality of life was significantly better among never smokers than current/former smokers (mean 3.5 vs. 3.9, p = 0.03). Only 43.2% of the current/former smokers reported having discussed tobacco use with their physician, and 17.5% did not believe smoking increased the risk of thrombosis. Conclusion The current study suggests that smoking may be associated with increased prevalence and severity of MPN symptoms and underscores the need to enhance patient education and address tobacco use in the care of MPN patients.

The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF): International Prospective Validation and Reliability Trial in 402 patients

Blood ◽  
2011 ◽  
Vol 118 (2) ◽  
pp. 401-408 ◽  
Author(s):  
Robyn Scherber ◽  
Amylou C. Dueck ◽  
Peter Johansson ◽  
Tiziano Barbui ◽  
Giovanni Barosi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Polycythemia Vera ◽  
Essential Thrombocythemia ◽  
Myeloproliferative Neoplasms ◽  
Intraclass Correlation ◽  
Myeloproliferative Neoplasm ◽  
Symptom Assessment ◽  
The United States ◽  
Life Questionnaire

Abstract Symptomatic burden in myeloproliferative neoplasms is present in most patients and compromises quality of life. We sought to validate a broadly applicable 18-item instrument (Myeloproliferative Neoplasm Symptom Assessment Form [MPN-SAF], coadministered with the Brief Fatigue Inventory) to assess symptoms of myelofibrosis, essential thrombocythemia, and polycythemia vera among prospective cohorts in the United States, Sweden, and Italy. A total of 402 MPN-SAF surveys were administered (English [25%], Italian [46%], and Swedish [28%]) in 161 patients with essential thrombocythemia, 145 patients with polycythemia vera, and 96 patients with myelofibrosis. Responses among the 3 administered languages showed great consistency after controlling for MPN subtype. Strong correlations existed between individual items and key symptomatic elements represented on both the MPN-SAF and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30. Enrolling physicians' blinded opinion of patient symptoms (6 symptoms assessed) were highly correlated with corresponding patients' responses. Serial administration of the English MPN-SAF among 53 patients showed that most MPN-SAF items are well correlated (r > 0.5, P < .001) and highly reproducible (intraclass correlation coefficient > 0.7). The MPN-SAF is a comprehensive and reliable instrument that is available in multiple languages to evaluate symptoms associated with all types of MPNs in clinical trials globally.

scholarly journals Symptom burden, psychological distress, and health-related quality of life in cancer survivors with pelvic late radiation tissue injuries

2021 ◽  
Author(s):  
Grete K. Velure ◽  
Bernd Müller ◽  
May Aa. Hauken
Keyword(s):  
Quality Of Life ◽  
Psychological Distress ◽  
Cancer Survivors ◽  
Symptom Burden ◽  
Life Questionnaire ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Tissue Injuries

Abstract Purpose Curative radiotherapy for cancer may lead to severe late radiation tissue injuries (LRTIs). However, limited knowledge exists about pelvic cancer survivors’ LRTI symptoms, distress, and health-related quality of life (HRQOL). We sought to assess the symptom burden, distress, and HRQOL in survivors with established pelvic LRTIs compared to norm populations and to investigate the relation between these factors. Methods Cancer survivors referred for treatment of established pelvic LRTIs were recruited nationwide. LTRIs were assessed with the Expanded Prostate Cancer Index Composite (EPIC), psychological distress was assessed with the General Health Questionnaire (GHQ-12), and HRQOL was assessed with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORCT-QLQ-C30). Results A total of 107 participants (mean age 64, 53% men) were included. Compared to norms, participants reported more urinary (mean 68.7 vs. 89.5; p = 0.00; d = 1.4) and bowel symptoms (mean 62.5 vs. 92.4; p = 0.00; d = 2.7), increased psychological distress (mean 13.4 vs. 10.3; p = 0.00; d = 0.6), and overall poorer HRQOL (mean 54.9 vs. 71.2; p = 0.00; d = 0.7). Higher symptom burden and higher levels of psychological distress were associated with lower HRQOL (r2 = 46%), but psychological distress did not moderate the influence of symptoms on HRQOL. Conclusion Cancer survivors with established pelvic LRTIs are highly burdened compared to norms. The association of the LRTI-related symptom burden with HRQOL is independent of the level of psychological distress. Both coping and treatment interventions are crucial to promoting long-term health and HRQOL. Trial registration NCT03570229.

scholarly journals P1062EXPANDED DIALYSIS (HDX): IS THERE AN IMPACT ON PATIENT REPORTED SYMPTOM?

2020 ◽  
Vol 35 (Supplement_3) ◽  
Author(s):  
Jarrin Penny ◽  
Fabio R Salerno ◽  
Lisa Hur ◽  
Christopher McIntyre
Keyword(s):  
Quality Of Life ◽  
Clinical Outcomes ◽  
Symptom Burden ◽  
Well Being ◽  
Response To Therapy ◽  
High Flux ◽  
Patient Reported ◽  
Dialysis Membranes ◽  
The Impact

Abstract Background and Aims High flux dialysis membranes sufficiently remove smaller sized uremic toxins however, the accumulation and retention of larger middle molecular weight toxins, which are associated with chronic inflammation, cardiovascular disease and suboptimal outcomes are poorly cleared. The recent advent of medium-cut-off dialysis membranes, labelled “expanded dialysis” (HDx) are permeable to molecules of larger size responsible for poor clinical outcomes. However, it remains unclear if HDx can directly impact the symptoms associated with hemodialysis (HD). Symptom burden plays a significant role in quality of life (QOL) and mortality rates in the HD population. The London Evaluation of Illness (LEVIL), an application-based platform has been developed to measure patient reported outcomes (PROM). In comparison to cross-sectional PROM’s, LEVIL more accurately represents the fluctuations in daily symptoms and the impact of intervention. LEVIL evaluates general well-being, energy, sleep, appetite, pain and breathing, all of which are outcomes of interest on symptom burden in chronic kidney disease. Our aim was to determine if HDx therapy had any effect on symtoms/QOL domains using LEVIL. Method 28 patients from two dialysis centers in London Ontario were consented to participate. Patients were required to be over 18 years of age and on conventional thrice weekly maintenance HD for at least three months. 23 participants completed study and analyzed (five lost for various reasons). Baseline (BL) symptom characteristics were obtained while using high flux membrane for two weeks. Symptoms continued to be measured throughout the 12 weeks of HDx therapy two-three times weekly using LEVIL. Laboratory biomarkers including beta-2 microglobulin and free-light chains were collected at baseline and after 12 weeks of HDx therapy. Results Patients were stratified into tertiles (high/middle/low) using mean values of BL symptoms scores in each domain (wellbeing, energy, sleep, appetite, pain, breathing). Those in the high BL group were labeled as “control”. Low and middle BL measures were further stratified into responders vs. non-responders (responders were considered to have a 50% increase in any symptom domain by ≥50%). Of those domains which responded to HDx, 76% also had low BL scores with 27% having middle BL scores. General wellbeing, energy and sleep were domains with the greatest response reaching statistical significance after eight weeks of therapy. HDx had limited effect on appetite, pain and breathing. Although stratification was per domain, overall, 74% of the population studied did respond in at least one domain, with some responding in as many as five. Conclusion HDx using Theranova (Baxter) shows the most benefit in domains with low BL measures. Additionally, not everyone who had low BL scores responded after 12 weeks of therapy, leaving us to question whether HDx may have a latent effect in some individuals/populations. Those who had no response to therapy in certain domains also had greater baseline quality of life respectively. This information may assist in decision making/rationale for the utilization and implementation of such therapy. Although more work is required to further stratify symptoms in relation to demographic/biochemical finding and clinical outcomes. It is evident that HDx improves patient reported symptoms and QOL.

scholarly journals Quality of life and symptom burden among myeloproliferative neoplasm patients: do symptoms impact quality of life?

2018 ◽  
Vol 60 (2) ◽  
pp. 402-408
Author(s):  
Blake T. Langlais ◽  
Holly Geyer ◽  
Robyn Scherber ◽  
Ruben A. Mesa ◽  
Amylou C. Dueck
Keyword(s):  
Quality Of Life ◽  
Myeloproliferative Neoplasm ◽  
Symptom Burden

scholarly journals Quality of Life of Patients with Advanced Cancer in Palliative Therapy and in Palliative Care

Aquichan ◽  
2019 ◽  
Vol 19 (3) ◽  
pp. 1-14
Author(s):  
Leonel dos Santos Silva ◽  
Bruna Eloise Lenhani ◽  
Dabna Hellen Tomim ◽  
Paulo Ricardo Bittencourt Guimarães ◽  
Luciana Puchalski Kalinke
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Palliative Therapy ◽  
Symptom Assessment ◽  
Assessment System ◽  
Life Questionnaire ◽  
Edmonton Symptom Assessment System ◽  
Quality Of Life Questionnaire ◽  
Chronic Illness Therapy

Objective: To assess the quality of life of patients with advanced cancer in palliative therapy and in palliative care. Materials and Methods: Quantitative, observational, cross-sectional, and analytic study conducted in a teaching hospital in Paraná, Brazil, from January to June 2018, with 126 patients: 107 in palliative therapy; 19 in exclusive palliative care. The questionnaires for data collection were: Quality of Life Questionnaire-Core 15-Palliative, Functional Assessment of Chronic Illness Therapy-Palliative Care 14, and Edmonton Symptom Assessment System. The Spearman non-parametric coefficient test was used for the analysis. Results: The overall quality of life in palliative therapy and in palliative care was, respectively, 71.54/59.65; when correlating the total score of quality of life of the Quality of Life Questionnaire-Core 15-Palliative with the Functional Assessment of Chronic Illness Therapy-Palliative Care 14 (p = 0.001), and the Edmonton Symptom Assessment System (p = 0.001), significant difference of better quality of life was observed in the palliative therapy. Conclusion: Patients in palliative therapy have good overall quality of life, while the palliative care group reports regular quality of life. The symptoms were milder in the palliative therapy and more intense and with greater significance in palliative care; hence, knowing the compromise of quality of life will help professionals in planning interventions with transdisciplinary approach for patients and for their families.

Myeloproliferative Neoplasm Quality Of Life (MPN-QOL) Study Group: Observational Study Of Quality Of Life and Symptomatic Response In Myelofibrosis Patients Receiving Undergoing Treatment With Conventional Therapy, The Measures Trial and Allogeneic Stem Cell Transplant, The Symptoms Trial

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 4090-4090
Author(s):  
Veena Fauble ◽  
Robyn M. Emanuel ◽  
Holly Lynn Geyer ◽  
Amylou Constance Dueck ◽  
Nicolaus Kroeger ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Stem Cell ◽  
Myeloproliferative Neoplasm ◽  
Symptom Burden ◽  
Study Group ◽  
Cell Transplant ◽  
Symptom Profile ◽  
Prospective Trials ◽  
Global Impression Of Change

Abstract Introduction Myelofibrosis (MF) and Post PV/ET MF represents a group of debilitating hematological disorders in which quality of life (QOL) is severely compromised in most patients as a result of persistent constitutional symptoms, progressive cytopenias, and splenomegaly. Conventional therapeutic modalities have largely focused on symptoms palliation rather than cure. Allogeneic stem cell transplantion (ASCT) remains the only potential curative option for intermediate and high risk disease. Till now, outcome data for MF have historically focused on survival benefit. Until now, few studies have evaluated the QOL, financial burden, and symptom response in MF patients undergoing treatment including ASCT. The development of the Myeloproliferative Symptom Assessment Form Total Symptom (MPN-SAF TSS) score in 2012 allows us to objectively quantify with a standardized tool these crucial aspects of patients care. The Myeloproliferative Neoplasm Quality of Life (MPN-QOL) Study Group aims to objectively quantify symptomatic response to standard available treatments by utilizing the MPN-SAF TSS. We introduce two MPN-QOL prospective trials currently in active enrollment: The MPN Experimental Assessment of Symptoms by Utilizing Repetitive Evaluation (MEASURE) Trial and the Symptoms Yielded in Myelofibrosis Patients after Transplant as Objectified by MPN-SAF TSS (SYMPTOMS) Trial. Our intention with these studies is to quantify the QOL and symptom burden of PMF and post PV/ET MF patients undergoing treatment including ASCT. Methods The MEASURES trial is a prospective questionnaire based study evaluating the responsiveness of the MPN-SAF TSS in detecting symptomatic changes in target symptoms for an anticipated 180 ET, PV and MF (including primary MF, post-ET and post PV MF) patients receiving non-experimental medical therapy (aspirin, hydroxyurea, anagrelide, interferon, busulfan, melphalan, cladribine, thalidomide, lenalidomide, prednisone, danazol, ruxolitinib) and/or phlebotomy. Patients complete the MPN-SAF for seven consecutive days at the time of enrollment and repeat the survey for an additional seven consecutive days between 90 days and six months. Patients also complete the MDASI, EORTC and Global Impression of Change Items on the first day of the second assessment. Physicians acquire demographic, laboratory, physical examination and radiographic data, along with serial response assessments. In parallel, the SYMPTOMS trial is prospective questionnaire based study evaluating the QOL of patients undergoing ASCT utilizing MPN-SAF TSS, the FACT-BMT, Global Impression of Change, and a financial questionnaire. Patients will be evaluated at various time points pre-transplant, day 30, day 100 and 1 year post-transplant. Participants (N=110) will be prospectively enrolled from Mayo Clinic Arizona (MCA) with other centers to soon join. To date we have enrolled 5 patients from MCA on the SYMPTOMS trial and 32 patients on the MEASURES trial. Results Both trials began open enrollment in the summer of 2012 and remain in recruitment phase. Our updated preliminary data will be presented at the ASH 2013 meeting Conclusion Myeloproliferative Neoplasms have been associated with debilitating symptom profile that can significantly impair the QOL. We recognize the burden of this disease and treatment and have therefore initiated two ongoing parallel prospective trials with goals to quantify the QOL and symptom burden of MPN patients. By quantifying degree of burden and impairment in QOL in a standardized format in MPN patients undergoing a range of treatments, we will in the future be better able to inform our patients of the likely benefits and toxicities of the available treatment options. Disclosures: Birgegard: Vifor Pharma: Honoraria.

scholarly journals Bone Damage After Chemotherapy for Lymphoma: A Real-World Experience

2021 ◽  
Author(s):  
Mancuso S ◽  
Scaturro D ◽  
Santoro M ◽  
Di Gaetano G ◽  
Vitagliani F ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Patients ◽  
Hypovitaminosis D ◽  
Complete Response ◽  
Response To Therapy ◽  
Screening Tools ◽  
Patient Treatment ◽  
Life Questionnaire ◽  
Biological Variables

Abstract Background: Despite recent improvements in survival due to advances in treatment, the quality of life of patients with lymphoma may be compromised by the long-term complications of chemotherapy and steroid therapy. Among these, a potentially relevant problem is bone loss and the development of fragility fractures.Aim: To provide further evidence of clinical or subclinical skeletal complications in correlation with biological variables and markers of bone disease in patients with complete response to therapy.Method: A cross-sectional observational study was conducted on subjects diagnosed with lymphoma with subsequent antineoplastic treatment, disease status after therapy defined as complete response disease for at least a year now. We performed: blood chemistry tests, imaging techniques (DEXA) and screening tools for the assessment of functional status and quality of life (SARC-F and mini-OQLQ).Results: Approximately 50% of the patients had osteoporosis. We found hypovitaminosis D and high PTH levels in most of the patients. We also found a high prevalence of vertebral fractures in 65.5% of cases. In the majority of patients, we found hypovitaminosis D and high levels of PTH. Furthermore, a statistically significant association between high PTH levels and previous lymphoma treatment. Finally, the Mini Osteoporosis Quality of Life questionnaire demonstrated a loss of quality of life as a consequence of the change in bone status.Conclusions: Patient treatment design for personalized chemotherapy would be desirable to reduce late effects on bone. Also, early prevention programs need to be applied before starting treatment. The most benefited subpopulations could be not only elderly but also young patients.

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