scholarly journals Validation of a Modified Version of the Myeloproliferative Neoplasm Symptom Assessment Form Total Symptom Score

2021 ◽  
Vol 10 (5) ◽  
pp. 207-211
Author(s):  
Blake T. Langlais ◽  
Gina L. Mazza ◽  
Heidi E. Kosiorek ◽  
Jeanne Palmer ◽  
Ruben Mesa ◽  
...  
Keyword(s):  
Symptom Score ◽  
Myeloproliferative Neoplasm ◽  
Symptom Assessment ◽  
Total Symptom Score

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 Validation of a Modified Version of the Myeloproliferative Neoplasm Symptom Assessment Form Total Symptom Score (MPN-SAF TSS)

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 26-26
Author(s):  
Blake T. Langlais ◽  
Heidi E. Kosiorek ◽  
Gina L. Mazza ◽  
Carolyn Mead-Harvey ◽  
Richard Butterfield ◽  
...  
Keyword(s):  
Clin Oncol ◽  
Symptom Score ◽  
Internal Consistency ◽  
Research Funding ◽  
Symptom Assessment ◽  
Mean Difference ◽  
Total Symptom Score ◽  
Symptom Experience ◽  
Cronbach's Alpha ◽  
Highly Correlated

Background Patients with myeloproliferative neoplasms (MPNs) are faced with severe disease-related fatigue among a range of other constitutional and spleen-related symptoms. The MPN-Symptom Assessment Form (SAF) is recommended for use to characterize symptom burden (Scherber R, et al. Blood 2011). Within the SAF, a profile of 18 symptom items are evaluated ranging in severity from 0 (absent) to 10 (worst imaginable). The SAF is often summarized to the MPN-SAF Total Symptom Score (TSS) for analysis purposes - a single computed sum of the 10 most clinically meaningful symptom scores, including fatigue (Emanuel R, et al. J Clin Oncol 2012). Though the SAF includes a fatigue item, initial deployments of the MPN-SAF TSS incorporated a 0-10 scaled fatigue item taken from the Brief Fatigue Inventory (BFI; Mendoza T, et al. Cancer 1999). A subsequent version of the MPN-SAF TSS for use within myelofibrosis clinical trials (called the MFSAF v4; Gwaltney C, et al. Leuk Res 2017) employed a harmonized fatigue item. This analysis employing data from two studies was carried out to assess the use of the SAF fatigue item within the MPN-SAF TSS for consistency with the MFSAF v4. Methods Both BFI and SAF fatigue items were included in an initial online survey evaluating disease burden among patients with MPNs. Participants were assigned to survey variants as a function of their age. Survey variants included those to receive 1 instance of either the BFI or SAF fatigue item, instances of both BFI and SAF, or 2 instances of the same fatigue item. Surveying was aimed to assess the worst symptom experience in the patient's last 24 hours. Additionally, an independent survey assessing the impact of COVID-19 among MPN patients was deployed using the SAF fatigue item for the MPN-SAF TSS. This modified version was then used to test internal validity. Pearson correlation (r) and t-tests were used to assess association, Bland-Altman methods were used to evaluate systematic agreement between BFI and SAF fatigue scores, and Cronbach's alpha was used to measure internal consistency. Results There were 229 participants assigned both BFI and SAF fatigue items within the same survey. Among them, 51% (n=117) received the BFI item first and 49% (n=112) the SAF item first. No difference was seen between first and second fatigue scores (mean difference [first-second] = 0.00; 95%CI -0.18, 0.17). BFI and SAF fatigue scores were highly correlated (r=0.88, p&lt;0.001) and showed 88.7% agreement in categorizing severe versus non-severe fatigue (score ≥ 7 versus &lt; 7). Overall concordance in severity category was 73.4% (category [score range]: absent [0]; mild [1-3]; moderate [4-6]; severe [7-10]). Constructing the MPN-SAF TSS using the BFI and SAF fatigue components separately, the original and modified MPN-SAF TSS were nearly identical (r=0.997, p&lt;0.001), and had equivalent internal consistency (both Cronbach's alpha=0.88). The Bland-Altman plot further indicates the 2 fatigue measures have high agreement with no evidence of directional bias and negligible overall bias (Figure 1: regression slope = -0.04, p=0.25; mean difference=0.22; 95%CI 0.05, 0.39). Within the COVID-19 survey (n=1217), the modified version of the MPN-SAF TSS was consistent with known correlates among disease characteristics (Emanuel R, et al. J Clin Oncol 2012). For example, more severe MPN-SAF TSS scores were highly correlated with low quality-of-life (n=1156, r = -0.50, p&lt;0.001), and associated with those reporting spleen enlargement (n=301) versus not (n=617) (p&lt;0.001; mean difference=7.7; 95%CI 5.4, 10.1). Conclusion The BFI and SAF fatigue items are highly consistent in raw score, severity category, and in contribution to the MPN-SAF TSS. There was no order effect seen in which fatigue item was asked first. The independent COVID-19 survey using the modified MPN-SAF TSS was validated and shows high internal consistent. In the ongoing development to capture the symptom experience, this analysis shows disease-related fatigue is equivalently measured using the SAF fatigue survey item in harmonization with the MFSAF v4. Disclosures Mesa: Bristol Myers Squibb: Research Funding; CTI BioPharma: Research Funding; Promedior: Research Funding; AbbVie: Research Funding; Samus Therapeutics: Research Funding; Genentech: Research Funding; Incyte: Research Funding; LaJolla Pharmaceutical Company: Consultancy; Novartis: Consultancy; Sierra Oncology: Consultancy.

scholarly journals Caracterização e sintomas de pacientes colombianos com neoplasias mieloproliferativas

2018 ◽  
Vol 16 (1) ◽  
pp. 59
Author(s):  
Edgar Salguero Peña ◽  
Leonardo José Enciso Olivera ◽  
Teófilo Lozano Apache
Keyword(s):  
Symptom Score ◽  
Myeloproliferative Neoplasm ◽  
Total Symptom Score

Objetivo: describir las características sociodemográ cas y los síntomas en pacientes colombianos con neoplasias mieloproliferativas crónicas. Métodos: los autores utilizaron la información contenida en el ejercicio de validación de la escala de síntomas mpn-saf tss —myeloproliferative neoplasm symptom assess- ment form total symptom score—, la cual, a través de una metodología de encuesta en 62 pacientes diagnosticados con estas neoplasias a escala nacional, aportó el insumo de análisis para alcanzar el objetivo de este estudio. Resultados: dentro de las características sociodemográ cas, la variable edad concentró el 59% de los pacientes incluidos en el estudio por encima de los 60 años con una media de 58,8 (ds 15,53). Se identi ca una mayor frecuencia y severidad de los síntomas en pacientes con diagnóstico de policitemia vera, seguido de trombocitemia esencial y, por último, en pacientes con diagnóstico de mielo brosis. La “fatiga” se manifestó en el 98,3% de los pacientes, siendo el principal síntoma registrado en la escala utilizada en este estudio. Conclusión: los pacientes en estudio presentaron una edad promedio de 59 años con una mayor proporción de mujeres (58%) y una escolaridad baja (40%). El total de síntomas referidos en la escala se presentaron en más del 70% de los pacientes, siendo los más frecuentes fatiga, saciedad temprana y problemas de concentración.

scholarly journals HOW DO LEARNING DISORDERS IMPACT CLINICAL MEASURES FOLLOWING CONCUSSION?

2020 ◽  
Vol 8 (4_suppl3) ◽  
pp. 2325967120S0018
Author(s):  
Aaron J. Zynda ◽  
Mathew A. Stokes ◽  
Jane S. Chung ◽  
C. Munro Cullum ◽  
Shane M. Miller
Keyword(s):  
Symptom Score ◽  
Learning Disorders ◽  
Total Symptom Score ◽  
Adhd Group ◽  
Motor Speed ◽  
The North ◽  
History Of ◽  
Visual Motor ◽  
Clinical Measures ◽  
The Impact

Background: There is limited evidence examining the impact of learning disorders on testing and screening scores used in evaluation following concussion in adolescents. Purpose: To examine differences in clinical measures between adolescents with a history of dyslexia or ADD/ADHD and those without a history of learning disorder (LD) following concussion. Methods: Data were collected from participants enrolled in the North Texas Concussion Network Prospective Registry (ConTex). Participants ages 10-18 who had been diagnosed with a concussion sustained within 30 days of enrollment were included. Participants were separated into three groups based on self-reported prior diagnosis: dyslexia, ADD/ADHD, and no history of LD. Clinical measures from initial presentation were examined, including ImPACT®, King-Devick (KD), SCAT-5 symptom log, Patient Health Questionnaire (PHQ-8), and Generalized Anxiety Disorder (GAD-7) scale. Independent t-test analysis was performed to compare scores between groups. Results: A total of 993 participants were included; 68 with dyslexia, 141 with ADD/ADHD, and 784 with no history of LD. There was no difference in age, sex, time since injury, or history of concussion between the dyslexia group and no LD group. In the ADD/ADHD group, there were significantly more male participants (64.5% and 50.3% respectively, p=0.002). Participants with a history of dyslexia had a significant increase in KD time (63.7 sec vs 56.5 sec, p=0.019). Additionally, ImPACT® testing showed a decrease in visual motor speed (28.87 vs 32.99, p= 0.010). Total symptom score was higher in this group as well (36.22 vs 28.27, p=0.013). In those with a history of ADD/ADHD, multiple domains were found to be significantly different on ImPACT® testing including visual motor speed (30.05), reaction time (0.75), and cognitive efficiency (0.23) when compared to those with no LD (32.99, 0.71, and 0.27 respectively, p=0.004, 0.047, 0.027). KD time was also significantly higher in this group (62.1 sec vs 56.5 sec, p=0.008), as was the total symptom score (32.99 vs 28.27, p=0.043). PHQ-8 and GAD-7 were both significantly higher in the group with ADD/ADHD (5.79 and 5.06 respectively, p=0.001) than those with no LD (4.32 and 3.56, p=0.001). Conclusion: Differences were seen in participants with a history of dyslexia and ADD/ADHD on clinical concussion measures, including ImPACT® and KD testing, SCAT-5 symptom log, and screenings for depression and anxiety. A better understanding of the unique profiles seen in these patients will aid providers in their evaluation and assist as they counsel families regarding their child’s injury.

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 Randomized Controlled Trial Evaluating Aerobic Training and Common Sport-Related Concussion Outcomes in Healthy Participants

2018 ◽  
Vol 53 (12) ◽  
pp. 1156-1165
Author(s):  
Elizabeth F. Teel ◽  
Johna K. Register-Mihalik ◽  
Lawrence Gregory Appelbaum ◽  
Claudio L. Battaglini ◽  
Kevin A. Carneiro ◽  
...  
Keyword(s):  
Aerobic Exercise ◽  
Symptom Score ◽  
Aerobic Training ◽  
Intervention Group ◽  
Assessment Tools ◽  
Total Symptom Score ◽  
Exercise Interventions ◽  
Randomized Controlled ◽  
Healthy Participants ◽  
Active Training

Context Aerobic exercise interventions are increasingly being prescribed for concussion rehabilitation, but whether aerobic training protocols influence clinical concussion diagnosis and management assessments is unknown. Objective To investigate the effects of a brief aerobic exercise intervention on clinical concussion outcomes in healthy, active participants. Design Randomized controlled clinical trial. Setting Laboratory. Patients or Other Participants Healthy (uninjured) participants (n = 40) who exercised ≥3 times/week. Intervention(s) Participants were randomized into the acute concussion therapy intervention (ACTIVE) training or nontraining group. All participants completed symptom, cognitive, balance, and vision assessments during 2 test sessions approximately 14 days apart. Participants randomized to ACTIVE training completed six 30-minute exercise sessions that progressed from 60% to 80% of individualized maximal oxygen consumption (V˙o2max) across test sessions, while the nontraining group received no intervention. Main Outcome Measure(s) The CNS Vital Signs standardized scores, Vestibular/Ocular Motor Screening near-point convergence distance (cm), and Graded Symptom Checklist, Balance Error Scoring System, and Standardized Assessment of Concussion total scores. Results An interaction effect was found for total symptom score (P = .01); the intervention group had improved symptom scores between sessions (session 1: 5.1 ± 5.8; session 2: 1.9 ± 3.6). Cognitive flexibility, executive functioning, reasoning, and total symptom score outcomes were better but composite memory, verbal memory, and near-point convergence distance scores were worse at the second session (all P values &lt; .05). However, few changes exceeded the 80% reliable change indices calculated for this study, and effect sizes were generally small to negligible. Conclusions A brief aerobic training protocol had few meaningful effects on clinical concussion assessment in healthy participants, suggesting that current concussion-diagnostic and -assessment tools remain clinically stable in response to aerobic exercise training. This provides normative data for future researchers, who should further evaluate the effect of ACTIVE training on clinical outcomes among concussed populations. Trial Registration Number ClinicalTrials.gov: NCT02872480

Symptom assessment tool for overactive bladder syndrome—overactive bladder symptom score

Urology ◽  
2006 ◽  
Vol 68 (2) ◽  
pp. 318-323 ◽  
Author(s):  
Yukio Homma ◽  
Masaki Yoshida ◽  
Narihito Seki ◽  
Osamu Yokoyama ◽  
Hidehiro Kakizaki ◽  
...  
Keyword(s):  
Overactive Bladder ◽  
Symptom Score ◽  
Assessment Tool ◽  
Symptom Assessment ◽  
Overactive Bladder Syndrome ◽  
Bladder Symptom ◽  
Overactive Bladder Symptom Score

scholarly journals Patient Reported Symptoms and Tryptase Levels in WHO-Defined Systemic Mastocytosis (SM) Versus Mast Cell Activation Syndrome (MCAS) Versus Neither

Blood ◽  
2014 ◽  
Vol 124 (21) ◽  
pp. 3204-3204
Author(s):  
Darci Zblewski ◽  
Ramy A. Abdelrahman ◽  
Dong Chen ◽  
Joseph H. Butterfield ◽  
Ayalew Tefferi ◽  
...  
Keyword(s):  
Mast Cell ◽  
Symptom Score ◽  
Cell Activation ◽  
Total Symptom Score ◽  
Mast Cell Activation ◽  
Median Score ◽  
Serum Tryptase ◽  
Tryptase Level ◽  
Patient Reported ◽  
Symptom Scores

Abstract Introduction: The utility of patient reported symptoms and serum tryptase levels in distinguishing those with systemic mastocytosis (SM) versus mast cell activation syndrome (MCAS) versus those not meeting formal diagnostic criteria for SM or MCAS has not been systematically examined. Methods: This study was approved by our institutional review board. Patients were referred for suspected SM based on symptoms of mast cell activation, osteopenia, skin rash, etc., or had an established diagnosis of SM. All patients were given a Mastocytosis Symptom Assessment Form (MastSAF) to complete at their initial evaluation. The MastSAF is comprised of 36 symptom questions to be graded on a scale of 0 (absent) to 10 (worst imaginable), and is organized around 9 symptom clusters: gastrointestinal (8 questions), constitutional (3 questions), musculoskeletal (5 questions), cutaneous (4 questions), neuropsychological (6 questions), genitourinary (3 questions), respiratory (4 questions), angioedema (1 question), and cardiovascular (2 questions). All patients underwent bone marrow biopsy and serum tryptase level assessment. SM was diagnosed by 2008 WHO criteria. In the presence of characteristic symptoms, if clonal or abnormal mast cells were not identified, and if serum/urine mast cell mediator levels were increased, then non-SM associated, non-monoclonal MCAS was diagnosed. Results: A total 53 patients were studied. 1) SM: Of 28 patients, 13 had indolent SM (ISM), 9 aggressive SM (ASM) and 6 SM with associated hematological disease (SM-AHD) The median total symptom score was 47 (range 8-159). The median (range) for SM subgroups was: ISM 51 (9-159), ASM 55 (19-157) and SM-AHD 27 (8-131) (p=0.2). The normalized median score for individual symptom categories (total median score/no. of symptoms per category) in order of severity was cutaneous 1.9, gastrointestinal 1.8, constitutional 1.7, neuropsychological 1.3, respiratory 1.3, musculoskeletal 0.9, cardiovascular 0.3, genitourinary 0.3, and angioedema 0. Symptom severity was not significantly different among the 3 SM subgroups, except for constitutional symptoms (median score ASM 9, ISM 4, SM-AHD 2.5, p=0.02). The median (range) tryptase level was 48.4 ng/mL (8.8-282); four patients (14%) had a baseline level <20 ng/mL. The median (range) tryptase level among SM subgroups was: ISM 46.9 (8.8-225), ASM 103 (29.4-282), and SM-AHD 43.5 (28.5-233) (p=0.1). When considering patients with tryptase level ≥50 versus <50 ng/mL, symptom scores were not significantly higher in the former group with the exception of constitutional (p=0.02) and genitourinary symptoms (p=0.04). 2) MCAS: 15 patients The median total symptom score was 127 (range 2-248). The normalized median score for individual symptom categories in order of severity was neuropsychological 4.5, musculoskeletal 4.2, cutaneous 4.0, constitutional 3.3, gastrointestinal 2.1, respiratory and cardiovascular 2.0 each, genitourinary 1.7, and angioedema 1.0. The median (range) serum tryptase level at referral was 12.7 ng/mL (1.7-25.8); five patients (33%) had a baseline level >20 ng/mL. 3) Neither SM/MCAS: 10 patients The median total symptom score was 119 (range 45-177). The normalized median score for individual symptom categories in order of severity was musculoskeletal 4.2, gastrointestinal 3.6, constitutional 3.3, neuropsychological 3.3, cutaneous 3.0, cardiovascular and genitourinary 2.0 each, respiratory 1.3, and angioedema 0. The median (range) serum tryptase level at referral (n=9) was 4.8 ng/mL (2.9-6.6). 4) Comparison: MCAS vs. SM: Symptom scores were significantly higher in MCAS as compared to SM (p<0.05), except for genitourinary and respiratory symptoms, which were not significantly different. ‘Neither SM/MCAS’ vs. SM: Symptom scores (total, gastrointestinal, constitutional, musculoskeletal, cutaneous, and neuropsychological) were significantly higher in the former group (p<0.05). Other symptom scores were not significantly different. Conclusions: The spectrum and severity of patient reported symptoms was broadly similar among WHO subcategories of SM, and serum tryptase level had limited if any correlation with symptom scores. Despite the significantly higher overall symptom burden in MCAS versus SM, tryptase levels in the former group were significantly lower with values >30 ng/mL unusual. Despite overlap, the top ranked symptoms in the 3 groups were different. Disclosures No relevant conflicts of interest to declare.

Sign in / Sign up

Export Citation Format

Share Document