scholarly journals NCOG-23. PATIENT-REPORTED SYMPTOM BURDEN AND INTERFERENCE: A COMPARISON BETWEEN COVID-19 PANDEMIC YEAR AND NORMATIVE DATA IN PATIENTS WITH CENTRAL NERVOUS SYSTEM (CNS) TUMORS

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi156-vi157
Author(s):  
Valentina Pillai ◽  
Lily Polskin ◽  
Elizabeth Vera ◽  
Alvina Acquaye ◽  
Nicole Briceno ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Spinal Cord Tumor ◽  
Symptom Burden ◽  
Course Evaluation ◽  
Normative Sample ◽  
Tumor Patients ◽  
Cns Tumor ◽  
Care Plans ◽  
Patient Reported

Abstract CNS tumor patients are highly symptomatic causing interference with activity and worse quality of life. Social distancing due to the COVID-19 pandemic increased demands on the patient, caregivers, clinicians, and the health care system. The NCI’s Neuro-Oncology Branch Natural History Study (NHS) systematically collected patient-reported outcomes (PROs) provide insight into how these challenges influenced symptom burden and interference during the COVID year. METHODS: Patient and disease characteristic as well as patient-reported symptoms and interference (MDASI-BT/-SP) and general health status (EQ-5D-3L) from 3/2020-2/2021) were compared to NHS normative sample collected prior to 3/2020. RESULTS: The sample (n = 178) was primarily White (82%), male (55%), median age of 45 (range 18 – 79) and KPS ³ 90 (51%). The majority had high-grade (70%) brain (83%) tumors (BT) with ≥ 1 prior recurrence (60%) and 25% were on active treatment. Clinical visits were primarily conducted via telehealth (64%) and 20% of all patients were diagnosed with progression at the time of assessment. Most commonly reported moderate-severe symptoms among BT patients were fatigue (30%), difficulty remembering (28%), feeling drowsy (22%). Among spinal cord tumor patients, fatigue (39%), pain (35%) and numbness/tingling in arms/legs/trunk (35%) were most frequently reported. These symptoms were reported in similar frequencies by the normative sample. Nearly half of the COVID year sample (48%) reported moderate-severe activity-related interference. Reported problems with mobility (38%), self-care (19%), pain/discomfort (40%), and usual activities (50%) were similar in both groups except for increased mood disturbance (53%) was reported during the COVID year. CONCLUSION: These findings support CNS tumor patients remained highly symptomatic with significant impact on health-related quality of life during the COVID year. Clinicians should develop timely individual care plans to help BT patients navigate their disease course. Evaluation of risk associated with more severe symptoms and functional limitations are ongoing.

scholarly journals Quality of Life and Symptom Burden 1 Month After Concussion in Children and Adolescents

2018 ◽  
Vol 58 (1) ◽  
pp. 42-49 ◽  
Author(s):  
David R. Howell ◽  
Julie C. Wilson ◽  
Michael W. Kirkwood ◽  
Joseph A. Grubenhoff
Keyword(s):  
Quality Of Life ◽  
Physical Health ◽  
Children And Adolescents ◽  
Symptom Burden ◽  
Psychosocial Health ◽  
Post Injury ◽  
Persistent Symptoms ◽  
Patient Reported ◽  
A Prospective Study

We conducted a prospective study of children and adolescents (n = 176; mean age = 13.0 ±2.7 years; 38% female) assessed acutely post-concussion and again 30 days later. We investigated the association between symptom burden and quality of life (QOL) outcomes, as well as the effect of age on QOL. We assessed QOL using patient-reported Pediatric Quality of Life Inventory 4.0, and symptoms using the Health and Behavior Inventory (HBI). Acute (<2 days post-injury) HBI ratings demonstrated a low correlation ( R2 = 0.08) with physical health QOL and a moderate correlation with psychosocial health QOL ( R2 = 0.21) 30 days post-concussion. HBI ratings 30 days post-concussion demonstrated a moderately high correlation with physical health QOL ( R2 = 0.35) and psychosocial health QOL ( R2 = 0.57). Age was not significantly associated with physical or psychosocial QOL ratings. Impairments in QOL following concussion may identify children and adolescents who need additional referral to address persistent symptoms at this time.

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 QOLP-10. PATIENT-REPORTED OUTCOMES DURING TREATMENT FOR GLIOBLASTOMA: SYMPTOM BURDEN AND ASSOCIATED IMPACT ON DAILY LIFE

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi199-vi199
Author(s):  
Meghan Hultman ◽  
Megan Tipps ◽  
Minda Liu ◽  
Nilanjana Banerji ◽  
Patricia Bruns ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Brain Tumor ◽  
Daily Life ◽  
Symptom Burden ◽  
Clinical Information ◽  
Symptom Experience ◽  
Surgical Interventions ◽  
Patient Reported ◽  
Late Treatment

Abstract INTRODUCTION Glioblastoma is the most common primary malignant brain tumor, with an annual incidence of 3–4 new cases per 100,000 people. Despite advances in chemotherapy, radiotherapy, and surgical interventions, prognosis remains poor. Aims of treatment for life-limiting diagnoses should extend beyond increasing survival time to include palliation of symptoms and promotion of quality of life. Here we describe patient-reported symptoms both early and late in the glioblastoma treatment trajectory, as well as their associated interference with daily life. METHODS Fifty patients with newly diagnosed glioblastoma were recruited between September 2015-March 2018. Demographic and clinical information was collected from medical records. Patients also completed the brain tumor-specific MD Anderson Symptom Inventory (MDASI-BT) approximately every 8 weeks from completion of chemoradiation through cessation of active disease treatment. Both individual and categories of related symptoms reported in the initial two (early treatment) and final two (late treatment) MDASI-BT assessments were examined for symptom frequency, severity, and relationships between symptom severity and interference with daily life. Patients still receiving treatment or who completed < 4 total MDASI-BT assessments were excluded from the analysis. RESULTS The most commonly reported symptoms were often, but not always, consistent with the symptoms rated as most severe. This was true for individual symptoms as well as categories of symptoms. The most common/severe symptoms also changed from early to late treatment. Overall symptom burden was positively correlated with symptom interference in daily life (r=0.67, p< 0.0001). Regression analysis identified different symptoms as predictors of interference in early as opposed to late treatment, and these predictors did not necessarily align with the most common/severe symptoms. CONCLUSION Symptom experience for patients with glioblastoma is complex and dynamic. Attention to symptom trajectories for patients with glioblastoma may direct approaches to assessment, early identification, and symptom management, thus promoting better quality of life.

scholarly journals Quality of life in a real-world study of patients with metastatic colorectal cancer treated with trifluridine/tipiracil

2020 ◽  
Vol 27 (5) ◽  
Author(s):  
W.Y. Cheung ◽  
P. Kavan ◽  
A. Dolley
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Metastatic Colorectal Cancer ◽  
Real World ◽  
Symptom Burden ◽  
Physical Symptom ◽  
Activity Impairment ◽  
Cross Sectional ◽  
Patient Reported

Background Quality of life (qol) is important for oncology patients, especially for those with late-stage disease. The present study was initiated to address the lack of published prospective data about the qol benefits of trifluri­dine/tipiracil (tfd/tpi) compared with best supportive care (bsc) in patients with refractory metastatic colorectal cancer (mcrc). Methods This prospective, cross-sectional, non-interventional study used multidimensional validated scales to evaluate patient-reported qol in two study cohorts of patients and also to measure differences in mcrc-related symptoms and pain in a real-world clinical setting. Results Our findings demonstrate that patients with refractory mcrc report better overall qol when treated with tfd/ tpi than with bsc alone. In that population, statistically significant differences in mean qol measures favoured tfd/tpi over bsc for physical symptom distress, psychological distress, activity impairment, overall valuation of life, and symptomatology. The overall better qol for patients receiving tfd/tpi implies that treatment was well tolerated and was associated with a lower symptom burden. No significant differences for pain were observed between the groups. Conclusions This study suggests that tfd/tpi is a well-tolerated option for the treatment of patients with refractory mcrc, showcasing the value of capturing real-world qol data in routine clinical practice.

scholarly journals Impacts of Surgery on Symptom Burden and Quality of Life in Pituitary Tumor Patients in the Subacute Post-operative Period

2019 ◽  
Vol 9 ◽  
Author(s):  
Mark R. Waddle ◽  
Mollie D. Oudenhoven ◽  
Casey V. Farin ◽  
Allison M. Deal ◽  
Riane Hoffman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pituitary Tumor ◽  
Symptom Burden ◽  
Tumor Patients ◽  
Post Operative Period

Gastrointestinal and Hepatic Involvement in Chronic Gvhd: An Analysis From the Chronic Gvhd Consortium

Blood ◽  
2012 ◽  
Vol 120 (21) ◽  
pp. 1940-1940
Author(s):  
Joseph Pidala ◽  
Xiaoyu Chai ◽  
Brenda Kurland ◽  
Mukta Arora ◽  
Corey Cutler ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Gvhd ◽  
Symptom Burden ◽  
Time Dependent ◽  
Upper Gi ◽  
Hepatic Involvement ◽  
Data Support ◽  
Patient Reported ◽  
Elevated Bilirubin

Abstract Abstract 1940 Background: Chronic graft-versus-host disease (GVHD) is a significant source of morbidity, mortality, impaired patient-reported quality of life (QOL), greater symptom burden, and prolonged duration of immune suppressive therapy following allogeneic hematopoietic cell transplantation (HCT). While available data support the adverse prognosis of overlap subtype of chronic GVHD, the relative importance of site of gastrointestinal (GI) and type of hepatic involvement is not known. Methods: We analyzed prospectively acquired observational cohort data to examine whether the site of GI involvement (esophageal, upper GI, lower GI) and type of hepatic laboratory test abnormality (bilirubin, alkaline phosphatase (AP), alanine aminotransferase (ALT) elevation over the upper limit of normal based on study site-specific laboratory reference ranges) among chronic GVHD-affected patients are associated with overall survival (OS) and non-relapse mortality (NRM), symptoms (Lee Symptom Scale), and quality of life (QOL) per SF-36 and FACT-BMT instruments. Results: This analysis included 567 individual subjects with baseline and 1548 follow up visits. The majority were incident cases (59%), adults (98%), and predominantly White/Non-Hispanic. Median time from HCT to cohort enrollment was 11.9 months (range 3–294 months). Overall NIH chronic GVHD severity was mild in 10%, moderate in 52%, and severe in 38% at enrollment. Prior acute GVHD was noted in 66%, KPS < 80% in 17%, and platelet count at chronic GVHD onset of < 100 K/uL in 23%. At enrollment, GI involvement was seen in 40% (upper GI 20%, esophagus 16%, lower GI 13%), and liver involvement was seen in 52% (AP 38%, ALT 38%, bilirubin 10%). Time from transplant to cGVHD onset was not different for patients with or without GI involvement or hepatic involvement. In multivariate analysis utilizing data from enrollment visits only and adjusting for patient and transplant variables, lower GI involvement (HR 1.7, p=0.03) and elevated bilirubin (HR 2.36, p=0.001) were associated with OS; both were also associated with NRM. In multivariable analysis using all visits (time-dependent covariates), GI score greater than zero (HR 1.7, p=0.01) and elevated bilirubin (HR 3.7, p<0.001) were associated with OS; results were similar for NRM. Separate models were constructed to examine the relationship of severity of GI and hepatic involvement (0–3 severity score per NIH consensus) and mortality: Increasing lower GI severity at enrollment was significantly associated with non-relapse mortality, with progressively increasing HR for greater severity levels (lower GI score 2/3 vs. 0: HR 5.5, 95% CI 2.3–13.1, p = 0.0001). Increasing bilirubin was also associated with NRM (bilirubin score 2/3 vs. 0: HR 3.3, 95% CI 1.3–8.4, p=0.01). A similar association was observed for bilirubin elevation and NRM in the time-dependent model (bilirubin 2/3 vs. 0: HR 8.9, 95% CI 3.3–24, p < 0.0001). When analyzing all visits, any esophageal involvement and GI score greater than zero were associated with both symptoms and QOL while elevated bilirubin was associated with QOL. We found no consistent evidence that upper GI involvement, AP, ALT, or NIH liver score add prognostic value for survival, overall symptom burden, or quality of life. Conclusion: These data support important differences in patient-reported outcomes according to GI and hepatic involvement among chronic GVHD affected patients, and identify those with elevated bilirubin or higher GI score at any time, or lower GI involvement at cohort enrollment, as patients at greater risk for mortality under current treatment approaches. Disclosures: No relevant conflicts of interest to declare.

Patient-reported symptom burden and quality of life in advanced lung cancer.

2012 ◽  
Vol 30 (15_suppl) ◽  
pp. e16570-e16570
Author(s):  
Shrividya Iyer ◽  
Alex Rider ◽  
Gavin Taylor-Stokes ◽  
Adam Roughley
Keyword(s):  
Quality Of Life ◽  
Lung Cancer ◽  
Performance Status ◽  
Symptom Burden ◽  
Shortness Of Breath ◽  
Patient Reported ◽  
And Performance ◽  
Loss Of Appetite ◽  
Nsclc Patients

e16570 Background: The main objective of our study was to assess patient reported symptom burden and impact on quality of life in advanced non small cell lung cancer (NSCLC) patients in the United States. Methods: Patients with advanced (stage IIIB/IV) NSCLC (N=450) were recruited with informed consent in a nationwide (US) lung cancer study from Oct-Dec 2011. Patient reported symptoms were assessed using the Lung Cancer Symptom Scale (LCSS) on a 0-100 visual analogue scale and included six symptoms: fatigue, appetite loss, shortness of breath, cough, pain and blood in sputum. An average symptom burden index was calculated. Quality of life was assessed using the Functional Assessment of Cancer Therapy- Lung (FACT-L).Higher scores indicate higher symptom severity on the LCSS and better quality of life on the FACT-L. Correlation between the total FACT-L score and LCSS symptom burden index was assessed. A multivariate regression analysis was performed with FACT-L total score as the dependent variable and LCSS symptom scores as predictors controlling for age, gender, stage and performance status. Results: Majority of the patients were male (59%), Caucasian (74%), smokers/ex-smokers (78%) with an average age of 64 years. Proportion of patients reporting each lung cancer symptom was: Fatigue (100%), loss of appetite (97%), shortness of breath (95%), cough (93%), pain (92%) and blood in sputum (63%). The average (SD) symptom burden index was 42.3 (21.5).The mean± SD severity scores on symptoms were: fatigue (53.2±24.7), loss of appetite (48.1±25.8), cough (48.4±29.9), shortness of breath (44.7± 27), pain (39.7± 28.1) and blood in sputum (18.4±23.6). The average (SD) FACT-L score was 71.7 (25.3). A significant negative correlation was found between the LCSS symptom burden index and FACT-L scores (ρ= -0.82; p<0.001). Loss of appetite (β=-0.204; p<0.001), cough (β= -0.145; p<0.01), pain (β=-0.265; p<0.001), shortness of breath (β = -0.145; p<0.01), age (β= 0.217; p<0.05) and performance status (β = 0.283; p<0.001) were found to be significant predictors of quality of life. Conclusions: Cough, pain, shortness of breath and loss of appetite contribute to symptom burden and have a significant negative impact on quality of life in advanced NSCLC patients.

Computerized adaptive technology for the assessment of HRQOL of PD and CKD patients

2020 ◽  
pp. 089686082095996
Author(s):  
Fredric O Finkelstein ◽  
Monica Cimini ◽  
Susan H Finkelstein ◽  
Alan S Kliger
Keyword(s):  
Quality Of Life ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Related Quality ◽  
Adaptive Technology ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

This study was designed as a pilot study to see whether electronic patient-reported outcome measures using computer adaptive technology (CAT) could be successfully implemented in clinics caring for chronic kidney disease (CKD) and peritoneal dialysis (PD) patients. The results demonstrate the feasibility of using CAT on an iPad to assess the symptom burden and health-related quality of life of both PD and CKD patients.

Simultaneous assessment of targeted anticancer therapy-associated mucocutaneous adverse events.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20669-e20669
Author(s):  
Christine Bettine Boers-Doets ◽  
Hans Gelderblom ◽  
Joel Brian Epstein ◽  
Mario E. Lacouture ◽  
Ad A Kaptein
Keyword(s):  
Quality Of Life ◽  
Targeted Therapy ◽  
Adverse Events ◽  
Assessment Tool ◽  
Symptom Burden ◽  
Specific Patient ◽  
Study Protocols ◽  
Patient Reported ◽  
Meta Analyses

e20669 Background: Mucocutaneous adverse events (mcAEs), including papulopustular rash, xerosis, pruritus, paronychia, hand-foot skin reaction, edema, taste alterations, oral pain and ulceration, hair-, periungual-, and ocular changes occur in the majority of patients during targeted anticancer therapies. Different mcAEs can be present with a variable symptom burden and affect upon patients’ quality of life. Use of standardized targeted therapy specific tools allows comparison of outcomes from different studies and in meta-analyses, advancing patient care and improving outcomes. A mcAE specific assessment tool about symptom burden is currently not available. A questionnaire which assesses both targeted therapy specific patient reported outcomes (PRO) measures and healthcare provider reported outcomes (HPRO) measures is warranted, therefore. Methods: A three-phase process was utilized for item generation, item reduction and scale construction. A comprehensive literature review was performed in PubMed, CINAHL and Embase, and study protocols were screened. Keywords were assessment, questionnaire, tool, EGFRI, and rash. All items with potential relevance for the tool were selected for further evaluation. Twentyone EGFRI treated patients filled out the draft-questionnaire. Results: The search resulted in a simultaneous tool in the form of 61 PRO, and 50 HPRO items. Both tools assess experienced mcAEs inclusive number of papules and pustules, area involved, severity and duration of the symptoms, used products, effectiveness of various (medical) interventions, treatment adherence and distress from the symptoms. Patient input resulted in the addition of 1 item, modification of 7 items, and deletion of 2 items. Conclusions: A novel tool has been generated to assess the experienced mcAEs and effectiveness of supportive care interventions. Since the patient and the provider report mcAEs simultaneously, the provided data are directly comparable, facilitating assessment of quality of life and, therefore, improving quality of medical care.

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