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 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.

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 A Case Report on Symptom Improvement in a Polycythemia Vera Patient Treated with Acupuncture

2021 ◽  
Vol 42 (5) ◽  
pp. 976-981
Author(s):  
Eujin Kim ◽  
Soyoung Hur ◽  
Cho-Hyun Hwang ◽  
Eungyeong Jang ◽  
Jang-Hoon Lee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Polycythemia Vera ◽  
Bone Pain ◽  
Acupuncture Treatment ◽  
Myeloproliferative Neoplasm ◽  
Symptom Assessment ◽  
Symptom Improvement ◽  
Subjective Symptoms ◽  
Significant Symptom

Objectives: This study investigated the effectiveness of acupuncture for improving polycythemia-vera-related symptoms and quality of life.Methods: A 56-year-old woman diagnosed with polycythemia vera received acupuncture treatment between February 19, 2021, and August 26, 2021. We observed the changes in subjective symptoms and conducted myeloproliferative neoplasm symptom assessment form total symptom score (MPN-SAF TSS) questionnaire.Results: After 13 acupuncture treatment sessions over six months, symptoms of polycythemia vera, such as fatigue, bone pain, itching, and headache, improved.Conclusion: This study suggests that acupuncture may be a helpful treatment strategy for polycythemia vera patients suffering from significant symptom burdens and reduced quality of life.

scholarly journals Angioedema quality of life questionnaire (AE-QoL) - interpretability and sensitivity to change

2019 ◽  
Vol 17 (1) ◽  
Author(s):  
Kanokvalai Kulthanan ◽  
Leena Chularojanamontri ◽  
Chuda Rujitharanawong ◽  
Puncharas Weerasubpong ◽  
Marcus Maurer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Convergent Validity ◽  
Characteristic Curve ◽  
Intraclass Correlation ◽  
Life Questionnaire ◽  
Sensitivity To Change ◽  
Validity And Reliability ◽  
Distribution Method ◽  
Patient Reported

Abstract Background The Angioedema Quality of Life (AE-QoL) is the first patient reported outcome measure developed for the assessment of quality of life (QoL) impairment in patients with recurrent angioedema (RAE). This study aimed to evaluate the clinimetric properties of the AE-QoL in Thai patients and to establish categories of QoL impairment assessed by the AE-QoL. Methods The validated Thai version of the Dermatology Life Quality Index (DLQI) and Patient Global Assessment of Quality of Life (PGA-QoL) were used to comparatively evaluate the Thai version of AE-QoL. Spearman correlations between the Thai AE-QoL and two other standard measurements (DLQI and PGA-QoL) were investigated to determine convergent validity. The Thai DLQI and PGA-QoL were used to categorize patients according to their QoL. Known-group validity of the Thai AE-QoL was later analyzed. The reliability of the Thai AE-QoL was investigated using Cronbach’s alpha and intraclass correlation. Three different approaches including the distribution method, receiver operating characteristic curve analysis, and the anchor based-method were used for the interpretability. Results A total of 86 patients with RAE with a median age of 38.0 ± 15.1 years (range 18–76) were enrolled. Of those, 76 patients (88%) had RAE with concomitant wheals, and 10 patients (11.6%) had RAE only. The AE-QoL assessed RAE-mediated QoL impairment with high convergent validity and known-groups validity, high internal consistency and test-retest reliability, and good sensitivity to change. Although the AE-QoL did not differentiate between patients with moderate and large effect as measured by PGA-QoL or DLQI in this study, AE-QoL total values of 0–23, 24 to 38, and ≥ 39 could define patients with “no effect”, “small effect”, and “moderate to large effect” of RAE on their QoL, respectively. Conclusions This study supports the validity and reliability of the Thai version of the AE-QoL, which is a very different language from the original version. Categories allow to classify the effect of RAE on patients’ QoL as “none”, “small”, and “moderate to large”. Further studies are needed to confirm the applicability of AE-QoL in other Asian populations”.

scholarly journals Splenomegaly impacts prognosis in essential thrombocythemia and polycythemia vera: A single center study

2019 ◽  
Vol 11 (4) ◽  
Author(s):  
Vincenzo Accurso ◽  
Marco Santoro ◽  
Simona Raso ◽  
Angelo Davide Contrino ◽  
Paolo Casimiro ◽  
...  
Keyword(s):  
Polycythemia Vera ◽  
Essential Thrombocythemia ◽  
Myeloproliferative Neoplasms ◽  
Clinical Manifestations ◽  
Primary Myelofibrosis ◽  
Thrombotic Risk ◽  
Single Center Study ◽  
The Impact ◽  
The Relationship

Splenomegaly is one of the major clinical manifestations of primary myelofibrosis and is common also in other chronic Philadelphia-negative myeloproliferative neoplasms, causing symptoms and signs and affecting quality of life of patients diagnosed with these diseases. We aimed to study the impact that such alteration has on thrombotic risk and on the survival of patients with essential thrombocythemia and patients with Polycythemia Vera (PV). We studied the relationship between splenomegaly (and its grade), thrombosis and survival in 238 patients with et and 165 patients with PV followed at our center between January 1997 and May 2019.

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.

CROSS-CULTURAL QUALITY OF LIFE: JAPANESE AND AMERICAN COLLEGE STUDENTS

1995 ◽  
Vol 23 (2) ◽  
pp. 163-170 ◽  
Author(s):  
Kenneth D. Keith ◽  
Makoto Yamamoto ◽  
Noriko Okita ◽  
Robert L. Schalock
Keyword(s):  
Quality Of Life ◽  
Cultural Values ◽  
The United States ◽  
Cross Cultural ◽  
Life Questionnaire ◽  
Total Quality ◽  
American Students ◽  
Main Effects ◽  
Type Of School

The Quality of Student Life Questionnaire (QSLQ) was used to collect data on 946 students in eight colleges and universities in Japan and the United States. A series of 2 × 2 × 2 analyses of variance on total scores and four factors (Sa tisfaction, Competence/Productivity, Independence, and Social Belonging) were completed, comparing scores by gender, type of school (four-year vs. two-year) and nationality.For total quality of life scores, main effects were found for country (American scores were higher) and type of school (scores were higher for four-year colleges). Analysis of factor scores showed main effects for country (higher scores for American students) on all factors except Independence. These results are discussed in the context of differing cultural values and assumptions. Japanese and American views vary considerably, for example, on such issues as individuality, the role of groups, and perception of self. These differences must be considered in interpretation of cross-cultural findings.

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