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

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 1762-1762
Author(s):  
Allison Gathany ◽  
Robyn M. Scherber ◽  
Marlene Girardo ◽  
Heidi E. Kosiorek ◽  
Amylou C. Dueck ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Research Funding ◽  
Myeloproliferative Neoplasms ◽  
Myeloproliferative Neoplasm ◽  
Study Group ◽  
Experimental Assessment ◽  
Eortc Qlq C30 ◽  
Evaluation Measure ◽  
Eortc Qlq

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. Treatments include pharmacologic approaches, phlebotomy, and bone marrow transplant. Outcome studies have historically focused on hematologic improvement and survival benefit. Few prospective studies have evaluated patient-reported symptoms and quality of life outcomes after standard therapy. The Myeloproliferative Neoplasm Quality of Life (MPN-QOL) Study Group aims to objectively quantify symptomatic response to standard treatments. Here we provide updated results for the prospective MPN Experimental Assessment of Symptoms by Utilizing Repetitive Evaluation (MEASURE) trial. Methods: The MEASURE trial is a prospective international cohort study evaluating responsiveness of the Myeloproliferative Neoplasm Symptom Assessment Form Total Symptom Score (MPN-SAF TSS or MPN-10) in an anticipated 480 ET, PV, and MF patients receiving non-experimental medical therapy and/or phlebotomy. Patients complete the MPN-SAF TSS (JCO 2012) for seven consecutive days at enrollment then again for seven days between 90 days and six months later. Patients also complete the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30) and M.D. Anderson Symptom Inventory (MDASI) instruments at enrollment and on the first day of the second assessment. Physicians report demographic, laboratory, and clinical data. Results: Demographics To date, 340 patients have enrolled and 270 have completed both study visits. Participants include ET (60%), PV (29%), and MF (12%; including 68% primary MF, 12% post-ET, 20% post-PV) patients. Enrolled patients are 51% male. The most common therapies received prior to enrollment were aspirin (34%), phlebotomy (15%), hydroxyurea (14%), and warfarin/clopidogrel/anticoagulation (6%). The most common current MPN therapies were hydroxyurea (67%), aspirin (24%), phlebotomy (9%), and ruxolitinib (8%). Information on mutational analysis was also collected; 77% of patients have a known JAK2 V617F mutation, 3% have an MPL W515 mutation. Symptom Measures On the MPN-SAF TSS, the majority of individual symptoms assessed did not change significantly between the two assessment time points while on standard therapy. Notable exceptions were a significant decrease in weight loss (mean 2.0 vs. 1.7 on a 0=absent to 10=worst imaginable scale, p=0.005) and a significant worsening in quality of life (mean 3.6 vs. 3.8 on a 0=as good as it can be to 10=as bad as it can be scale, p=0.04). No changes were seen in other symptoms including early satiety, abdominal discomfort, night sweats, fatigue, inactivity, poor concentration, bone pain, itching, or fever. Similarly, the cumulative MPN-SAF TSS score remained stable at a mean of 24.4 over the treatment period. These findings were congruent with those observed using the EORTC QLQ-C30 instrument, with no significant changes seen in emotional, physical, role, cognitive, or social functioning. Finally, the MDASI also revealed a lack of change in either symptom severity (mean 2.7) or symptom distress (mean 3.0) scores, which remained stable over the study period. Discussion: Myeloproliferative neoplasms are associated with burdensome symptoms that significantly compromise quality of life. To date, no studies have quantified symptomatic response to standard-of-care treatments. Overall, results from the MEASURE study suggest that standard treatments have limited systematic impact on patient symptomatology over time, with no improvements in overall quality of life. However, we note the relatively low proportion of patients in this cohort treated with ruxolitinib, which has been shown previously to improve symptom burden, and this may have impacted the symptom responses seen in the group as whole; detailed responses by treatment and MPN subtype will be presented. Figure. Figure. Disclosures Dueck: Pfizer: Honoraria; Bayer: Employment; Phytogine: Employment. Ross:BMS: Honoraria; Novartis: Consultancy, Honoraria, Research Funding, Speakers Bureau; Celgene: Research Funding. Tam:Janssen: Honoraria, Research Funding; Gilead: Honoraria; AbbVie: Honoraria, Research Funding; Pharmacyclics: Honoraria, Travel funding; AbbVie: Honoraria, Research Funding; Roche: Honoraria; Beigene: Honoraria, Other: Travel funding; Pharmacyclics: Honoraria; Gilead: Honoraria; Roche: Honoraria; Beigene: Honoraria, Other: Travel funding. Radia:Novartis: Speakers Bureau; Blueprint: Consultancy. Mesa:UT Health San Antonio - Mays Cancer Center: Employment; Celgene: Research Funding; NS Pharma: Research Funding; Pfizer: Research Funding; Gilead: Research Funding; Genentech: Research Funding; Promedior: Research Funding; CTI Biopharma: Research Funding; Incyte Corporation: Research Funding; Novartis: Consultancy.

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 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 Synergy of pandemics-social isolation is associated with worsened Parkinson severity and quality of life

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Indu Subramanian ◽  
Joshua Farahnik ◽  
Laurie K. Mischley
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Social Isolation ◽  
Support Groups ◽  
Symptom Severity ◽  
Social Performance ◽  
Social Distancing ◽  
Patient Reported

Abstract Social isolation and its deleterious effects on health increases with age in the general population. People with Parkinson’s Disease (PWP) are no exception. Social isolation is a risk factor for worsened health outcomes and increased mortality. Symptoms such as depression and sleep dysfunction are adversely affected by loneliness. There is a paucity of research on social isolation in Parkinson’s disease (PD), which is all the more critical now in the setting of social distancing due to COVID-19. The goal of this study was to survey individuals with PD to evaluate whether social isolation is associated with PD symptom severity and quality of life. Only individuals reporting a diagnosis of idiopathic PD were included in this analysis. The primary outcome measures were the Patient-Reported Outcomes in PD (PRO-PD) and questions from PROMIS Global related to social health. PRO-PD scores increased as social performance and social satisfaction scores diminished. Individuals who reported being lonely experienced a 55% greater symptom severity than those who were not lonely (P < 0.01). Individuals who documented having a lot of friends had 21% fewer symptoms than those with few or no friends (P < 0.01). Social isolation was associated with greater patient-reported PD severity and lower quality of life, although it is unclear whether this is the cause and/or a consequence of the disease. In essence, the Parkinson pandemic and the pandemic of social isolation have been further compounded by the recent COVID-19 pandemic. The results emphasize the need to keep PWP socially connected and prevent loneliness in this time of social distancing. Proactive use of virtual modalities for support groups and social prescribing should be explored.

Prospective Validation of the Italian Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF: Italian) In 186 MPN Patients

Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 5060-5060
Author(s):  
Robyn Scherber ◽  
Tiziano Barbui ◽  
Alessandro M. Vannucchi ◽  
Francesco Passamonti ◽  
Giovanni Barosi ◽  
...  
Keyword(s):  
Research Funding ◽  
Patient Reported Outcomes ◽  
Myeloproliferative Neoplasm ◽  
Office Visit ◽  
Symptom Assessment ◽  
Advisory Committees ◽  
Patient Reported ◽  
Eortc Qlq C30 ◽  
The Usa ◽  
Eortc Qlq

Abstract Abstract 5060 Background: The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF) is a concise instrument of patient reported outcomes (PRO) designed to assess the unique spectrum of symptoms present in the majority of patients (Mesa et. al. Cancer 2007). We sought to validate the Italian Translation of the MPN-SAF which addresses 19 separate symptoms reported by MPN patients. Methods: Translation: We utilized the standard practice of PRO translation in which 3 independent translations are created by 3 independent translators fluent in both languages. A fourth translator then discussed the translations with the other translators and a consensus translation was obtained. Validation: Patients self completed the MPN-SAF: Italian at the time of a physician office visit and the Italian EORTC-QLQ-C30 (a widely used instrument of PRO for cancer patients) was co-administered for validation purposes. Results: Patients and Symptomatic Burden: 186 patients were prospectively enrolled (ET (N=88; 47%), PV (N=69; 37%) and MF (N=29; 16%)) a median of 6 years (range:0-29) from their diagnosis. Patients were of a median age (62; range 29–91 years) and gender (56% females) typical of the disease. 72% (N=135) had received some form of non-aspirin medical therapy for their disease, and 68% were on therapy at the time of completing the questionnaire. Patients frequently had a history of either thrombotic events (31%) and/or hemorrhagic events (13%). The MPN-SAF measured 19 items in the enrolled patients (data summarized in Table 1). Validation Analysis: EORTC-QLQ-C30: Consistent with our experience with the MPN-SAF:English, Pearson correlations between MPN-SAF:Italian individual symptom scores and the Italian EORTC-QLQ C30 showed excellent correlations with co-validation questions including fatigue, pain, insomnia, (all p<0.001). Excellent correlations were demonstrated between EORTC-QLQ-C30 subscales and corresponding MPN-SAF measurements. Comparison with MPN-SAF:English: Comparison with 102 patients prospectively completing the MPN-SAF: English (ET=20, PV=23, MF=59) in the USA indicated very strong correlations (when controlling for MPN subtype) in the prevalence of all 19 items assessed and only subtle differences in terms of symptomatic severity for fatigue, itching and insomnia. Conclusions: The MPN-SAF:Italian is an easy to administer, clear, 19-item inventory of patient-reported outcomes that is specific to MPNs. Additionally, the instrument is validated by 1) comparison to previously validated Italian instruments and 2) the correlation with the MPN-SAF:English. Utilization of the instrument in Italian MPN clinical trials will allow for useful comparison to patients completing the MPN-SAF in other countries and will serve as a valuable clinical marker of disease symptom severity. Disclosures: Vannucchi: Novartis: Membership on an entity's Board of Directors or advisory committees. Mesa:SBio: Research Funding; Novartis: Research Funding; Celgene: Research Funding; Incyte: Research Funding; Roche: Research Funding; eisai: Research Funding; telik: Research Funding.

Implementation of the VA Symptom Assessment Scale (VSAS): Five-year experience.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e23120-e23120
Author(s):  
Daphne Ruth Friedman ◽  
Vikas Patil ◽  
Kelli Marie Rasmussen ◽  
Brian C Sauer ◽  
Michael J. Kelley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Symptom Assessment ◽  
Assessment Scale ◽  
Veterans Health ◽  
Health Administration ◽  
Clinical Tool ◽  
Patient Reported ◽  
Symptom Assessment Scale

e23120 Background: Cancer patients experience symptoms which may precede diagnosis, occur during therapy, and persist into survivorship. Symptom assessments and patient reported outcomes have been shown to improve quality of life and extend survival in cancer patients. The Veterans Administration Symptom Assessment Scale (VSAS) is a clinical tool to document cancer-related symptoms. Here, we report VSAS adoption in five Veterans Health Administration (VHA) hematology-oncology sites during a five-year period. Methods: Data was collected from the Corporate Data Warehouse (CDW): VSAS data, date of birth, gender, race, ethnicity, vital status, year of cancer diagnosis, ICD-O-3, VHA facility, and clinic stop codes. Descriptive analyses of patient demographics, disease characteristics, and VSAS utilization was performed. VSAS is comprised of 13 symptoms, rated on a 0 to 10 scale. A VSAS visit was defined as the date the VSAS was administered to a patient. Results: From January 2013 through June 2018, there were 41,917 instances of VSAS administered to 9,409 unique patients at five VHA facilities: 8,512 (90.5%) were male; 5,241 (56%) were non-Hispanic White, 3,743 (40%) were Black, and 297 (3%) were other racial categories or not available. The median age at the first VSAS visit was 67 years. In patients whose oncologic diagnosis was recorded by a cancer registrar (4,536), the most common diagnoses were prostate cancer, lung cancer (all histologies), colon cancer, and multiple myeloma. The number of VSAS administrations increased annually, from 866 in 2013 to 12,775 in 2017, which may be attributed to increased adoption of VSAS across and within VHA facilities. Individual patients completed the VSAS 1-57 times (median 2). At the five VHA facilities utilizing VSAS in 2017, VSAS was administered at 56% of hematology-oncology clinic visits. Conclusions: VSAS is a tool to measure and document patient symptom burden, and has been successfully adopted in the last five years at select VHA facilities. Expanded use of VSAS throughout the VHA is an important step in improving the quality of life and extending survival of veterans with cancer and blood disorders.

Patient-reported disease-specific quality-of-life and symptom severity in systemic mastocytosis

Allergy ◽  
2016 ◽  
Vol 71 (11) ◽  
pp. 1585-1593 ◽  
Author(s):  
B. van Anrooij ◽  
J. C. Kluin-Nelemans ◽  
M. Safy ◽  
B. M. J. Flokstra-de Blok ◽  
J. N. G. Oude Elberink
Keyword(s):  
Quality Of Life ◽  
Symptom Severity ◽  
Systemic Mastocytosis ◽  
Patient Reported ◽  
Disease Specific

scholarly journals Accuracy of Achalasia Quality of Life and Eckardt scores for assessment of clinical improvement post treatment for achalasia

2020 ◽  
Author(s):  
Samuel Slone ◽  
Ambuj Kumar ◽  
John Jacobs ◽  
Vic Velanovich ◽  
Joel E Richter
Keyword(s):  
Quality Of Life ◽  
Predictive Validity ◽  
Symptom Severity ◽  
Medical Records ◽  
Convergent Validity ◽  
Pneumatic Dilatation ◽  
Post Treatment ◽  
Operating Characteristics ◽  
Patient Reported

Abstract Achalasia Quality of Life (ASQ) and Eckardt scores are two patient-reported instruments widely used to assess symptom severity in achalasia patients. ASQ is validated and reliable. Although Eckardt is commonly used, it has not been rigorously assessed for validity or reliability. This study aims to evaluate (i) the accuracy of Eckardt and ASQ for assessing improvement post-treatment (predictive validity), (ii) accuracy of Eckardt and ASQ for assessing improvement post-treatment with pneumatic dilatation (PD) versus surgical myotomy (predictive validity), and (iii) convergent validity of Eckardt and ASQ tools. Patients with achalasia treated between 2011 and 2018 were eligible. Both instruments were administered by telephone. Treatment failure was determined by the review of medical records by two clinicians. The predictive ability of ASQ and Eckardt instruments in identifying treatment successes and failures was determined using receiver operating characteristics analysis and summarized as area under the curve (AUC). A total of 106 patients met inclusion criteria with 39 PD, 51 Heller myotomy, and 16 per-oral endoscopic myotomy. A review of medical records and esophageal testing revealed 13 failures (12%). AUC for Eckardt was 0.96 (95% confidence interval [CI] 0.87–0.99] and ASQ 0.97 (95% CI 0.92–0.99). The Eckardt cutoff 4, and ASQ, cutoff 15, were 94% and 87% accurate in identifying treatment successes versus failures, respectively. The correlation coefficient between the two tools was 0.85. In conclusions, (i) ASQ and Eckardt scores are valid and reliable tools to assess symptom severity in achalasia patients, (ii) both instruments accurately classify treatment successes versus failures, and (iii) the choice of tool should be informed by the physicians and patients’ values and preferences and repeat physiologic testing may be reserved for treatment failures with either instrument and patients classified, as treatment successes may be spared routine physiologic testing in the long term.

Prospective Validation of the Swedish Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF: Swedish) In 114 MPN Patients

Blood ◽  
2010 ◽  
Vol 116 (21) ◽  
pp. 5053-5053
Author(s):  
Peter L. Johansson ◽  
Bjorn Andreasson ◽  
Robyn Scherber ◽  
Amylou Dueck ◽  
Jan Samuelsson ◽  
...  
Keyword(s):  
Research Funding ◽  
Patient Reported Outcomes ◽  
Myeloproliferative Neoplasm ◽  
Office Visit ◽  
Symptom Assessment ◽  
Early Satiety ◽  
Patient Reported ◽  
Eortc Qlq C30 ◽  
And Gender ◽  
Eortc Qlq

Abstract Abstract 5053 Background: The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF) is a concise instrument of patient reported outcomes (PRO) designed to assess the unique spectrum of symptoms present in the majority of patients (Mesa et. al. Cancer 2007). We sought to validate the Swedish Translation of the MPN-SAF which addresses 19 separate symptoms reported by MPN patients. Methods: We utilized the standard practice of PRO translation in which 3 independent translations are created by 3 independent translators fluent in both languages. A fourth translator then discussed the translations with the other translators and a consensus translation was obtained. Patients self completed the MPN-SAF: Swedish at the time of a physician office visit and the Swedish EORTC-QLQ-C30 was co-administered for validation purposes. Results: Patients and Symptomatic Burden: 114 patients were prospectively enrolled (ET (N=53; 47%), PV (N=53; 47%) and MF (N=8; 6%)) a median of 6 years (range:0-42) from their diagnosis. Patients were of a median age (68; range 27–88 years) and gender (53% females) typical of the disease. 78% (N=88) had received some form of non-aspirin medical therapy for their disease, and 75% were on therapy at the time of completing the questionnaire. Patients frequently had a history of either thrombotic events (26%) and/or hemorrhagic events (10%). The MPN-SAF measured 19 items in the enrolled patients (data summarized in Table 1). Validation Analysis: EORTC-QLQ-C30 Consistent with our experience with the MPN-SAF:English Pearson correlations between MPN-SAF-Swedish individual symptom scores and the Swedish EORTC-QLQ C30 showed excellent correlations with co-validation questions including fatigue, pain, headache, insomnia, early satiety, and sad mood (all p<0.001). Correlations with EORTC-QLQ-C30 subscales demonstrated excellent correlations between MPN-SAF measurements and corresponding subscales. Comparison with Mpn-Saf:English: Comparison with 102 patients prospectively completing the MPN-SAF: English (ET=20, PV=N=23, MF=59) showed (when adjusting for MPN subtype) excellent correlation with all but 3 items in which the prevalence of the symptoms was similar but the severity less in the Swedish cohort (early satiety, headache and impaired quality of life). Additionally, the ranking of the prevalence of symptoms was very well correlated between both cohorts when controlling for disease type. Conclusions: The MPN-SAF: Swedish is an easy to administer, clear, 19 item inventory of patient reported outcomes that is specific to MPNs. Additionally, the instrument is validated by 1) comparison to previously validated Swedish Instruments and 2) the correlation with the MPN-SAF:English. Utilization of the instrument in Swedish MPN clinical trials will allow for useful comparison to patients completing the MPN-SAF in other countries. Disclosures: Samuelsson: Roche Sweden: Mesa: SBio: Research Funding; Novartis: Research Funding; Celgene: Research Funding; Incyte: Research Funding; Roche: Research Funding; eisai: Research Funding; telik: Research Funding.

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